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Background of The Study – Examples and Writing Guide

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Background of The Study

Definition:

Background of the study refers to the context, circumstances, and history that led to the research problem or topic being studied. It provides the reader with a comprehensive understanding of the subject matter and the significance of the study.

The background of the study usually includes a discussion of the relevant literature, the gap in knowledge or understanding, and the research questions or hypotheses to be addressed. It also highlights the importance of the research topic and its potential contributions to the field. A well-written background of the study sets the stage for the research and helps the reader to appreciate the need for the study and its potential significance.

How to Write Background of The Study

Here are some steps to help you write the background of the study:

Identify the Research Problem

Start by identifying the research problem you are trying to address. This problem should be significant and relevant to your field of study.

Provide Context

Once you have identified the research problem, provide some context. This could include the historical, social, or political context of the problem.

Review Literature

Conduct a thorough review of the existing literature on the topic. This will help you understand what has been studied and what gaps exist in the current research.

Identify Research Gap

Based on your literature review, identify the gap in knowledge or understanding that your research aims to address. This gap will be the focus of your research question or hypothesis.

State Objectives

Clearly state the objectives of your research . These should be specific, measurable, achievable, relevant, and time-bound (SMART).

Discuss Significance

Explain the significance of your research. This could include its potential impact on theory , practice, policy, or society.

Finally, summarize the key points of the background of the study. This will help the reader understand the research problem, its context, and its significance.

How to Write Background of The Study in Proposal

The background of the study is an essential part of any proposal as it sets the stage for the research project and provides the context and justification for why the research is needed. Here are the steps to write a compelling background of the study in your proposal:

• Identify the problem: Clearly state the research problem or gap in the current knowledge that you intend to address through your research.
• Provide context: Provide a brief overview of the research area and highlight its significance in the field.
• Review literature: Summarize the relevant literature related to the research problem and provide a critical evaluation of the current state of knowledge.
• Identify gaps : Identify the gaps or limitations in the existing literature and explain how your research will contribute to filling these gaps.
• Justify the study : Explain why your research is important and what practical or theoretical contributions it can make to the field.
• Highlight objectives: Clearly state the objectives of the study and how they relate to the research problem.
• Discuss methodology: Provide an overview of the methodology you will use to collect and analyze data, and explain why it is appropriate for the research problem.
• Conclude : Summarize the key points of the background of the study and explain how they support your research proposal.

How to Write Background of The Study In Thesis

The background of the study is a critical component of a thesis as it provides context for the research problem, rationale for conducting the study, and the significance of the research. Here are some steps to help you write a strong background of the study:

• Identify the research problem : Start by identifying the research problem that your thesis is addressing. What is the issue that you are trying to solve or explore? Be specific and concise in your problem statement.
• Review the literature: Conduct a thorough review of the relevant literature on the topic. This should include scholarly articles, books, and other sources that are directly related to your research question.
• I dentify gaps in the literature: After reviewing the literature, identify any gaps in the existing research. What questions remain unanswered? What areas have not been explored? This will help you to establish the need for your research.
• Establish the significance of the research: Clearly state the significance of your research. Why is it important to address this research problem? What are the potential implications of your research? How will it contribute to the field?
• Provide an overview of the research design: Provide an overview of the research design and methodology that you will be using in your study. This should include a brief explanation of the research approach, data collection methods, and data analysis techniques.
• State the research objectives and research questions: Clearly state the research objectives and research questions that your study aims to answer. These should be specific, measurable, achievable, relevant, and time-bound.
• Summarize the chapter: Summarize the chapter by highlighting the key points and linking them back to the research problem, significance of the study, and research questions.

How to Write Background of The Study in Research Paper

Here are the steps to write the background of the study in a research paper:

• Identify the research problem: Start by identifying the research problem that your study aims to address. This can be a particular issue, a gap in the literature, or a need for further investigation.
• Conduct a literature review: Conduct a thorough literature review to gather information on the topic, identify existing studies, and understand the current state of research. This will help you identify the gap in the literature that your study aims to fill.
• Explain the significance of the study: Explain why your study is important and why it is necessary. This can include the potential impact on the field, the importance to society, or the need to address a particular issue.
• Provide context: Provide context for the research problem by discussing the broader social, economic, or political context that the study is situated in. This can help the reader understand the relevance of the study and its potential implications.
• State the research questions and objectives: State the research questions and objectives that your study aims to address. This will help the reader understand the scope of the study and its purpose.
• Summarize the methodology : Briefly summarize the methodology you used to conduct the study, including the data collection and analysis methods. This can help the reader understand how the study was conducted and its reliability.

Examples of Background of The Study

Here are some examples of the background of the study:

Problem : The prevalence of obesity among children in the United States has reached alarming levels, with nearly one in five children classified as obese.

Significance : Obesity in childhood is associated with numerous negative health outcomes, including increased risk of type 2 diabetes, cardiovascular disease, and certain cancers.

Gap in knowledge : Despite efforts to address the obesity epidemic, rates continue to rise. There is a need for effective interventions that target the unique needs of children and their families.

Problem : The use of antibiotics in agriculture has contributed to the development of antibiotic-resistant bacteria, which poses a significant threat to human health.

Significance : Antibiotic-resistant infections are responsible for thousands of deaths each year and are a major public health concern.

Gap in knowledge: While there is a growing body of research on the use of antibiotics in agriculture, there is still much to be learned about the mechanisms of resistance and the most effective strategies for reducing antibiotic use.

Edxample 3:

Problem : Many low-income communities lack access to healthy food options, leading to high rates of food insecurity and diet-related diseases.

Significance : Poor nutrition is a major contributor to chronic diseases such as obesity, type 2 diabetes, and cardiovascular disease.

Gap in knowledge : While there have been efforts to address food insecurity, there is a need for more research on the barriers to accessing healthy food in low-income communities and effective strategies for increasing access.

Examples of Background of The Study In Research

Here are some real-life examples of how the background of the study can be written in different fields of study:

Example 1 : “There has been a significant increase in the incidence of diabetes in recent years. This has led to an increased demand for effective diabetes management strategies. The purpose of this study is to evaluate the effectiveness of a new diabetes management program in improving patient outcomes.”

Example 2 : “The use of social media has become increasingly prevalent in modern society. Despite its popularity, little is known about the effects of social media use on mental health. This study aims to investigate the relationship between social media use and mental health in young adults.”

Example 3: “Despite significant advancements in cancer treatment, the survival rate for patients with pancreatic cancer remains low. The purpose of this study is to identify potential biomarkers that can be used to improve early detection and treatment of pancreatic cancer.”

Examples of Background of The Study in Proposal

Here are some real-time examples of the background of the study in a proposal:

Example 1 : The prevalence of mental health issues among university students has been increasing over the past decade. This study aims to investigate the causes and impacts of mental health issues on academic performance and wellbeing.

Example 2 : Climate change is a global issue that has significant implications for agriculture in developing countries. This study aims to examine the adaptive capacity of smallholder farmers to climate change and identify effective strategies to enhance their resilience.

Example 3 : The use of social media in political campaigns has become increasingly common in recent years. This study aims to analyze the effectiveness of social media campaigns in mobilizing young voters and influencing their voting behavior.

Example 4 : Employee turnover is a major challenge for organizations, especially in the service sector. This study aims to identify the key factors that influence employee turnover in the hospitality industry and explore effective strategies for reducing turnover rates.

Examples of Background of The Study in Thesis

Here are some real-time examples of the background of the study in the thesis:

Example 1 : “Women’s participation in the workforce has increased significantly over the past few decades. However, women continue to be underrepresented in leadership positions, particularly in male-dominated industries such as technology. This study aims to examine the factors that contribute to the underrepresentation of women in leadership roles in the technology industry, with a focus on organizational culture and gender bias.”

Example 2 : “Mental health is a critical component of overall health and well-being. Despite increased awareness of the importance of mental health, there are still significant gaps in access to mental health services, particularly in low-income and rural communities. This study aims to evaluate the effectiveness of a community-based mental health intervention in improving mental health outcomes in underserved populations.”

Example 3: “The use of technology in education has become increasingly widespread, with many schools adopting online learning platforms and digital resources. However, there is limited research on the impact of technology on student learning outcomes and engagement. This study aims to explore the relationship between technology use and academic achievement among middle school students, as well as the factors that mediate this relationship.”

Examples of Background of The Study in Research Paper

Here are some examples of how the background of the study can be written in various fields:

Example 1: The prevalence of obesity has been on the rise globally, with the World Health Organization reporting that approximately 650 million adults were obese in 2016. Obesity is a major risk factor for several chronic diseases such as diabetes, cardiovascular diseases, and cancer. In recent years, several interventions have been proposed to address this issue, including lifestyle changes, pharmacotherapy, and bariatric surgery. However, there is a lack of consensus on the most effective intervention for obesity management. This study aims to investigate the efficacy of different interventions for obesity management and identify the most effective one.

Example 2: Antibiotic resistance has become a major public health threat worldwide. Infections caused by antibiotic-resistant bacteria are associated with longer hospital stays, higher healthcare costs, and increased mortality. The inappropriate use of antibiotics is one of the main factors contributing to the development of antibiotic resistance. Despite numerous efforts to promote the rational use of antibiotics, studies have shown that many healthcare providers continue to prescribe antibiotics inappropriately. This study aims to explore the factors influencing healthcare providers’ prescribing behavior and identify strategies to improve antibiotic prescribing practices.

Example 3: Social media has become an integral part of modern communication, with millions of people worldwide using platforms such as Facebook, Twitter, and Instagram. Social media has several advantages, including facilitating communication, connecting people, and disseminating information. However, social media use has also been associated with several negative outcomes, including cyberbullying, addiction, and mental health problems. This study aims to investigate the impact of social media use on mental health and identify the factors that mediate this relationship.

Purpose of Background of The Study

The primary purpose of the background of the study is to help the reader understand the rationale for the research by presenting the historical, theoretical, and empirical background of the problem.

More specifically, the background of the study aims to:

• Provide a clear understanding of the research problem and its context.
• Identify the gap in knowledge that the study intends to fill.
• Establish the significance of the research problem and its potential contribution to the field.
• Highlight the key concepts, theories, and research findings related to the problem.
• Provide a rationale for the research questions or hypotheses and the research design.
• Identify the limitations and scope of the study.

When to Write Background of The Study

The background of the study should be written early on in the research process, ideally before the research design is finalized and data collection begins. This allows the researcher to clearly articulate the rationale for the study and establish a strong foundation for the research.

The background of the study typically comes after the introduction but before the literature review section. It should provide an overview of the research problem and its context, and also introduce the key concepts, theories, and research findings related to the problem.

Writing the background of the study early on in the research process also helps to identify potential gaps in knowledge and areas for further investigation, which can guide the development of the research questions or hypotheses and the research design. By establishing the significance of the research problem and its potential contribution to the field, the background of the study can also help to justify the research and secure funding or support from stakeholders.

Advantage of Background of The Study

The background of the study has several advantages, including:

• Provides context: The background of the study provides context for the research problem by highlighting the historical, theoretical, and empirical background of the problem. This allows the reader to understand the research problem in its broader context and appreciate its significance.
• Identifies gaps in knowledge: By reviewing the existing literature related to the research problem, the background of the study can identify gaps in knowledge that the study intends to fill. This helps to establish the novelty and originality of the research and its potential contribution to the field.
• Justifies the research : The background of the study helps to justify the research by demonstrating its significance and potential impact. This can be useful in securing funding or support for the research.
• Guides the research design: The background of the study can guide the development of the research questions or hypotheses and the research design by identifying key concepts, theories, and research findings related to the problem. This ensures that the research is grounded in existing knowledge and is designed to address the research problem effectively.
• Establishes credibility: By demonstrating the researcher’s knowledge of the field and the research problem, the background of the study can establish the researcher’s credibility and expertise, which can enhance the trustworthiness and validity of the research.

Disadvantages of Background of The Study

Some Disadvantages of Background of The Study are as follows:

• Time-consuming : Writing a comprehensive background of the study can be time-consuming, especially if the research problem is complex and multifaceted. This can delay the research process and impact the timeline for completing the study.
• Repetitive: The background of the study can sometimes be repetitive, as it often involves summarizing existing research and theories related to the research problem. This can be tedious for the reader and may make the section less engaging.
• Limitations of existing research: The background of the study can reveal the limitations of existing research related to the problem. This can create challenges for the researcher in developing research questions or hypotheses that address the gaps in knowledge identified in the background of the study.
• Bias : The researcher’s biases and perspectives can influence the content and tone of the background of the study. This can impact the reader’s perception of the research problem and may influence the validity of the research.
• Accessibility: Accessing and reviewing the literature related to the research problem can be challenging, especially if the researcher does not have access to a comprehensive database or if the literature is not available in the researcher’s language. This can limit the depth and scope of the background of the study.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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What is the Background of the Study and How to Write It

What is the Background of the Study in Research? 

The background of the study is the first section of a research paper and gives context surrounding the research topic. The background explains to the reader where your research journey started, why you got interested in the topic, and how you developed the research question that you will later specify. That means that you first establish the context of the research you did with a general overview of the field or topic and then present the key issues that drove your decision to study the specific problem you chose.

Once the reader understands where you are coming from and why there was indeed a need for the research you are going to present in the following—because there was a gap in the current research, or because there is an obvious problem with a currently used process or technology—you can proceed with the formulation of your research question and summarize how you are going to address it in the rest of your manuscript.

Why is the Background of the Study Important?

No matter how surprising and important the findings of your study are, if you do not provide the reader with the necessary background information and context, they will not be able to understand your reasons for studying the specific problem you chose and why you think your study is relevant. And more importantly, an editor who does not share your enthusiasm for your work (because you did not fill them in on all the important details) will very probably not even consider your manuscript worthy of their and the reviewers’ time and will immediately send it back to you.

To avoid such desk rejections , you need to make sure you pique the reader’s interest and help them understand the contribution of your work to the specific field you study, the more general research community, or the public. Introducing the study background is crucial to setting the scene for your readers.

Table of Contents:

• What is “Background Information” in a Research Paper?
• What Should the Background of a Research Paper Include?
• Where Does the Background Section Go in Your Paper?

Background of the Study Structure

Before writing your study background, it is essential to understand what to include. The following elements should all be included in the background and are presented in greater detail in the next section:

• A general overview of the topic and why it is important (overlaps with establishing the “importance of the topic” in the Introduction)
• The current state of the research on the topic or on related topics in the field
• Controversies about current knowledge or specific past studies that undergird your research methodology
• Any claims or assumptions that have been made by researchers, institutions, or politicians that might need to be clarified
• Methods and techniques used in the study or from which your study deviated in some way

Presenting the Study Background

As you begin introducing your background, you first need to provide a general overview and include the main issues concerning the topic. Depending on whether you do “basic” (with the aim of providing further knowledge) or “applied” research (to establish new techniques, processes, or products), this is either a literature review that summarizes all relevant earlier studies in the field or a description of the process (e.g., vote counting) or practice (e.g., diagnosis of a specific disease) that you think is problematic or lacking and needs a solution.

Example s of a general overview

If you study the function of a Drosophila gene, for example, you can explain to the reader why and for whom the study of fly genetics is relevant, what is already known and established, and where you see gaps in the existing literature. If you investigated how the way universities have transitioned into online teaching since the beginning of the Covid-19 pandemic has affected students’ learning progress, then you need to present a summary of what changes have happened around the world, what the effects of those changes have been so far, and where you see problems that need to be addressed. Note that you need to provide sources for every statement and every claim you make here, to establish a solid foundation of knowledge for your own study. 

Describing the current state of knowledge

When the reader understands the main issue(s), you need to fill them in more specifically on the current state of the field (in basic research) or the process/practice/product use you describe (in practical/applied research). Cite all relevant studies that have already reported on the Drosophila gene you are interested in, have failed to reveal certain functions of it, or have suggested that it might be involved in more processes than we know so far. Or list the reports from the education ministries of the countries you are interested in and highlight the data that shows the need for research into the effects of the Corona-19 pandemic on teaching and learning.

Discussing controversies, claims, and assumptions

Are there controversies regarding your topic of interest that need to be mentioned and/or addressed? For example, if your research topic involves an issue that is politically hot, you can acknowledge this here. Have any earlier claims or assumptions been made, by other researchers, institutions, or politicians, that you think need to be clarified?

Mentioning methodologies and approaches

While putting together these details, you also need to mention methodologies : What methods/techniques have been used so far to study what you studied and why are you going to either use the same or a different approach? Are any of the methods included in the literature review flawed in such a way that your study takes specific measures to correct or update? While you shouldn’t spend too much time here justifying your methods (this can be summarized briefly in the rationale of the study at the end of the Introduction and later in the Discussion section), you can engage with the crucial methods applied in previous studies here first.

When you have established the background of the study of your research paper in such a logical way, then the reader should have had no problem following you from the more general information you introduced first to the specific details you added later. You can now easily lead over to the relevance of your research, explain how your work fits into the bigger picture, and specify the aims and objectives of your study. This latter part is usually considered the “ statement of the problem ” of your study. Without a solid research paper background, this statement will come out of nowhere for the reader and very probably raise more questions than you were planning to answer.   

Where does the study background section go in a paper?

Unless you write a research proposal or some kind of report that has a specific “Background” chapter, the background of your study is the first part of your introduction section . This is where you put your work in context and provide all the relevant information the reader needs to follow your rationale. Make sure your background has a logical structure and naturally leads into the statement of the problem at the very end of the introduction so that you bring everything together for the reader to judge the relevance of your work and the validity of your approach before they dig deeper into the details of your study in the methods section .

Consider Receiving Professional Editing Services

Now that you know how to write a background section for a research paper, you might be interested in our AI text editor at Wordvice AI. And be sure to receive professional editing services , including academic editing and proofreading , before submitting your manuscript to journals. On the Wordvice academic resources website, you can also find many more articles and other resources that can help you with writing the other parts of your research paper , with making a research paper outline before you put everything together, or with writing an effective cover letter once you are ready to submit.

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How to Write an Effective Background of the Study: A Comprehensive Guide

Table of Contents

The background of the study in a research paper offers a clear context, highlighting why the research is essential and the problem it aims to address.

As a researcher, this foundational section is essential for you to chart the course of your study, Moreover, it allows readers to understand the importance and path of your research.

Whether in academic communities or to the general public, a well-articulated background aids in communicating the essence of the research effectively.

While it may seem straightforward, crafting an effective background requires a blend of clarity, precision, and relevance. Therefore, this article aims to be your guide, offering insights into:

• Understanding the concept of the background of the study.
• Learning how to craft a compelling background effectively.
• Identifying and sidestepping common pitfalls in writing the background.
• Exploring practical examples that bring the theory to life.
• Enhancing both your writing and reading of academic papers.

Keeping these compelling insights in mind, let's delve deeper into the details of the empirical background of the study, exploring its definition, distinctions, and the art of writing it effectively.

What is the background of the study?

The background of the study is placed at the beginning of a research paper. It provides the context, circumstances, and history that led to the research problem or topic being explored.

It offers readers a snapshot of the existing knowledge on the topic and the reasons that spurred your current research.

When crafting the background of your study, consider the following questions.

• What's the context of your research?
• Which previous research will you refer to?
• Are there any knowledge gaps in the existing relevant literature?
• How will you justify the need for your current research?
• Have you concisely presented the research question or problem?

In a typical research paper structure, after presenting the background, the introduction section follows. The introduction delves deeper into the specific objectives of the research and often outlines the structure or main points that the paper will cover.

Together, they create a cohesive starting point, ensuring readers are well-equipped to understand the subsequent sections of the research paper.

While the background of the study and the introduction section of the research manuscript may seem similar and sometimes even overlap, each serves a unique purpose in the research narrative.

Difference between background and introduction

A well-written background of the study and introduction are preliminary sections of a research paper and serve distinct purposes.

Here’s a detailed tabular comparison between the two of them.

What is the relevance of the background of the study?

It is necessary for you to provide your readers with the background of your research. Without this, readers may grapple with questions such as: Why was this specific research topic chosen? What led to this decision? Why is this study relevant? Is it worth their time?

Such uncertainties can deter them from fully engaging with your study, leading to the rejection of your research paper. Additionally, this can diminish its impact in the academic community, and reduce its potential for real-world application or policy influence .

To address these concerns and offer clarity, the background section plays a pivotal role in research papers.

The background of the study in research is important as it:

• Provides context: It offers readers a clear picture of the existing knowledge, helping them understand where the current research fits in.
• Highlights relevance: By detailing the reasons for the research, it underscores the study's significance and its potential impact.
• Guides the narrative: The background shapes the narrative flow of the paper, ensuring a logical progression from what's known to what the research aims to uncover.
• Enhances engagement: A well-crafted background piques the reader's interest, encouraging them to delve deeper into the research paper.
• Aids in comprehension: By setting the scenario, it aids readers in better grasping the research objectives, methodologies, and findings.

How to write the background of the study in a research paper?

The journey of presenting a compelling argument begins with the background study. This section holds the power to either captivate or lose the reader's interest.

An effectively written background not only provides context but also sets the tone for the entire research paper. It's the bridge that connects a broad topic to a specific research question, guiding readers through the logic behind the study.

But how does one craft a background of the study that resonates, informs, and engages?

Here, we’ll discuss how to write an impactful background study, ensuring your research stands out and captures the attention it deserves.

Identify the research problem

The first step is to start pinpointing the specific issue or gap you're addressing. This should be a significant and relevant problem in your field.

A well-defined problem is specific, relevant, and significant to your field. It should resonate with both experts and readers.

Here’s more on how to write an effective research problem .

Provide context

Here, you need to provide a broader perspective, illustrating how your research aligns with or contributes to the overarching context or the wider field of study. A comprehensive context is grounded in facts, offers multiple perspectives, and is relatable.

In addition to stating facts, you should weave a story that connects key concepts from the past, present, and potential future research. For instance, consider the following approach.

• Offer a brief history of the topic, highlighting major milestones or turning points that have shaped the current landscape.
• Discuss contemporary developments or current trends that provide relevant information to your research problem. This could include technological advancements, policy changes, or shifts in societal attitudes.
• Highlight the views of different stakeholders. For a topic like sustainable agriculture, this could mean discussing the perspectives of farmers, environmentalists, policymakers, and consumers.
• If relevant, compare and contrast global trends with local conditions and circumstances. This can offer readers a more holistic understanding of the topic.

Literature review

For this step, you’ll deep dive into the existing literature on the same topic. It's where you explore what scholars, researchers, and experts have already discovered or discussed about your topic.

Conducting a thorough literature review isn't just a recap of past works. To elevate its efficacy, it's essential to analyze the methods, outcomes, and intricacies of prior research work, demonstrating a thorough engagement with the existing body of knowledge.

• Instead of merely listing past research study, delve into their methodologies, findings, and limitations. Highlight groundbreaking studies and those that had contrasting results.
• Try to identify patterns. Look for recurring themes or trends in the literature. Are there common conclusions or contentious points?
• The next step would be to connect the dots. Show how different pieces of research relate to each other. This can help in understanding the evolution of thought on the topic.

By showcasing what's already known, you can better highlight the background of the study in research.

Highlight the research gap

This step involves identifying the unexplored areas or unanswered questions in the existing literature. Your research seeks to address these gaps, providing new insights or answers.

A clear research gap shows you've thoroughly engaged with existing literature and found an area that needs further exploration.

How can you efficiently highlight the research gap?

• Find the overlooked areas. Point out topics or angles that haven't been adequately addressed.
• Highlight questions that have emerged due to recent developments or changing circumstances.
• Identify areas where insights from other fields might be beneficial but haven't been explored yet.

State your objectives

Here, it’s all about laying out your game plan — What do you hope to achieve with your research? You need to mention a clear objective that’s specific, actionable, and directly tied to the research gap.

How to state your objectives?

• List the primary questions guiding your research.
• If applicable, state any hypotheses or predictions you aim to test.
• Specify what you hope to achieve, whether it's new insights, solutions, or methodologies.

Discuss the significance

This step describes your 'why'. Why is your research important? What broader implications does it have?

The significance of “why” should be both theoretical (adding to the existing literature) and practical (having real-world implications).

How do we effectively discuss the significance?

• Discuss how your research adds to the existing body of knowledge.
• Highlight how your findings could be applied in real-world scenarios, from policy changes to on-ground practices.
• Point out how your research could pave the way for further studies or open up new areas of exploration.

Summarize your points

A concise summary acts as a bridge, smoothly transitioning readers from the background to the main body of the paper. This step is a brief recap, ensuring that readers have grasped the foundational concepts.

How to summarize your study?

• Revisit the key points discussed, from the research problem to its significance.
• Prepare the reader for the subsequent sections, ensuring they understand the research's direction.

Include examples for better understanding

Research and come up with real-world or hypothetical examples to clarify complex concepts or to illustrate the practical applications of your research. Relevant examples make abstract ideas tangible, aiding comprehension.

How to include an effective example of the background of the study?

• Use past events or scenarios to explain concepts.
• Craft potential scenarios to demonstrate the implications of your findings.
• Use comparisons to simplify complex ideas, making them more relatable.

Crafting a compelling background of the study in research is about striking the right balance between providing essential context, showcasing your comprehensive understanding of the existing literature, and highlighting the unique value of your research .

While writing the background of the study, keep your readers at the forefront of your mind. Every piece of information, every example, and every objective should be geared toward helping them understand and appreciate your research.

How to avoid mistakes in the background of the study in research?

To write a well-crafted background of the study, you should be aware of the following potential research pitfalls .

• Stay away from ambiguity. Always assume that your reader might not be familiar with intricate details about your topic.
• Avoid discussing unrelated themes. Stick to what's directly relevant to your research problem.
• Ensure your background is well-organized. Information should flow logically, making it easy for readers to follow.
• While it's vital to provide context, avoid overwhelming the reader with excessive details that might not be directly relevant to your research problem.
• Ensure you've covered the most significant and relevant studies i` n your field. Overlooking key pieces of literature can make your background seem incomplete.
• Aim for a balanced presentation of facts, and avoid showing overt bias or presenting only one side of an argument.
• While academic paper often involves specialized terms, ensure they're adequately explained or use simpler alternatives when possible.
• Every claim or piece of information taken from existing literature should be appropriately cited. Failing to do so can lead to issues of plagiarism.
• Avoid making the background too lengthy. While thoroughness is appreciated, it should not come at the expense of losing the reader's interest. Maybe prefer to keep it to one-two paragraphs long.
• Especially in rapidly evolving fields, it's crucial to ensure that your literature review section is up-to-date and includes the latest research.

Example of an effective background of the study

Let's consider a topic: "The Impact of Online Learning on Student Performance." The ideal background of the study section for this topic would be as follows.

In the last decade, the rise of the internet has revolutionized many sectors, including education. Online learning platforms, once a supplementary educational tool, have now become a primary mode of instruction for many institutions worldwide. With the recent global events, such as the COVID-19 pandemic, there has been a rapid shift from traditional classroom learning to online modes, making it imperative to understand its effects on student performance.

Previous studies have explored various facets of online learning, from its accessibility to its flexibility. However, there is a growing need to assess its direct impact on student outcomes. While some educators advocate for its benefits, citing the convenience and vast resources available, others express concerns about potential drawbacks, such as reduced student engagement and the challenges of self-discipline.

This research aims to delve deeper into this debate, evaluating the true impact of online learning on student performance.

Why is this example considered as an effective background section of a research paper?

This background section example effectively sets the context by highlighting the rise of online learning and its increased relevance due to recent global events. It references prior research on the topic, indicating a foundation built on existing knowledge.

By presenting both the potential advantages and concerns of online learning, it establishes a balanced view, leading to the clear purpose of the study: to evaluate the true impact of online learning on student performance.

As we've explored, writing an effective background of the study in research requires clarity, precision, and a keen understanding of both the broader landscape and the specific details of your topic.

From identifying the research problem, providing context, reviewing existing literature to highlighting research gaps and stating objectives, each step is pivotal in shaping the narrative of your research. And while there are best practices to follow, it's equally crucial to be aware of the pitfalls to avoid.

Remember, writing or refining the background of your study is essential to engage your readers, familiarize them with the research context, and set the ground for the insights your research project will unveil.

Drawing from all the important details, insights and guidance shared, you're now in a strong position to craft a background of the study that not only informs but also engages and resonates with your readers.

Now that you've a clear understanding of what the background of the study aims to achieve, the natural progression is to delve into the next crucial component — write an effective introduction section of a research paper. Read here .

Frequently Asked Questions

The background of the study should include a clear context for the research, references to relevant previous studies, identification of knowledge gaps, justification for the current research, a concise overview of the research problem or question, and an indication of the study's significance or potential impact.

The background of the study is written to provide readers with a clear understanding of the context, significance, and rationale behind the research. It offers a snapshot of existing knowledge on the topic, highlights the relevance of the study, and sets the stage for the research questions and objectives. It ensures that readers can grasp the importance of the research and its place within the broader field of study.

The background of the study is a section in a research paper that provides context, circumstances, and history leading to the research problem or topic being explored. It presents existing knowledge on the topic and outlines the reasons that spurred the current research, helping readers understand the research's foundation and its significance in the broader academic landscape.

The number of paragraphs in the background of the study can vary based on the complexity of the topic and the depth of the context required. Typically, it might range from 3 to 5 paragraphs, but in more detailed or complex research papers, it could be longer. The key is to ensure that all relevant information is presented clearly and concisely, without unnecessary repetition.

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Table of Contents

The background of a study is one of the most important components of a research paper. The quality of the background determines whether the reader will be interested in the rest of the study. Thus, to ensure that the audience is invested in reading the entire research paper, it is important to write an appealing and effective background. So, what constitutes the background of a study, and how must it be written?

What is the background of a study?

The background of a study is the first section of the paper and establishes the context underlying the research. It contains the rationale, the key problem statement, and a brief overview of research questions that are addressed in the rest of the paper. The background forms the crux of the study because it introduces an unaware audience to the research and its importance in a clear and logical manner. At times, the background may even explore whether the study builds on or refutes findings from previous studies. Any relevant information that the readers need to know before delving into the paper should be made available to them in the background.

How is a background different from the introduction?

The introduction of your research paper is presented before the background. Let’s find out what factors differentiate the background from the introduction.

• The introduction only contains preliminary data about the research topic and does not state the purpose of the study. On the contrary, the background clarifies the importance of the study in detail.
• The introduction provides an overview of the research topic from a broader perspective, while the background provides a detailed understanding of the topic.
• The introduction should end with the mention of the research questions, aims, and objectives of the study. In contrast, the background follows no such format and only provides essential context to the study.

How should one write the background of a research paper?

The length and detail presented in the background varies for different research papers, depending on the complexity and novelty of the research topic. At times, a simple background suffices, even if the study is complex. Before writing and adding details in the background, take a note of these additional points:

• Start with a strong beginning: Begin the background by defining the research topic and then identify the target audience.
• Cover key components: Explain all theories, concepts, terms, and ideas that may feel unfamiliar to the target audience thoroughly.
• Take note of important prerequisites: Go through the relevant literature in detail. Take notes while reading and cite the sources.
• Maintain a balance: Make sure that the background is focused on important details, but also appeals to a broader audience.
• Include historical data: Current issues largely originate from historical events or findings. If the research borrows information from a historical context, add relevant data in the background.
• Explain novelty: If the research study or methodology is unique or novel, provide an explanation that helps to understand the research better.
• Increase engagement: To make the background engaging, build a story around the central theme of the research

Avoid these mistakes while writing the background:

• Ambiguity: Don’t be ambiguous. While writing, assume that the reader does not understand any intricate detail about your research.
• Unrelated themes: Steer clear from topics that are not related to the key aspects of your research topic.
• Poor organization: Do not place information without a structure. Make sure that the background reads in a chronological manner and organize the sub-sections so that it flows well.

Writing the background for a research paper should not be a daunting task. But directions to go about it can always help. At Elsevier Author Services we provide essential insights on how to write a high quality, appealing, and logically structured paper for publication, beginning with a robust background. For further queries, contact our experts now!

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What Is Background in a Research Paper?

So you have carefully written your research paper  and probably ran it through your colleagues ten to fifteen times. While there are many elements to a good research article, one of the most important elements for your readers is the background of your study.

What is Background of the Study in Research

The background of your study will provide context to the information discussed throughout the research paper . Background information may include both important and relevant studies. This is particularly important if a study either supports or refutes your thesis.

Why is Background of the Study Necessary in Research?

The background of the study discusses your problem statement, rationale, and research questions. It links  introduction to your research topic  and ensures a logical flow of ideas.  Thus, it helps readers understand your reasons for conducting the study.

Providing Background Information

The reader should be able to understand your topic and its importance. The length and detail of your background also depend on the degree to which you need to demonstrate your understanding of the topic. Paying close attention to the following questions will help you in writing background information:

• Are there any theories, concepts, terms, and ideas that may be unfamiliar to the target audience and will require you to provide any additional explanation?
• Any historical data that need to be shared in order to provide context on why the current issue emerged?
• Are there any concepts that may have been borrowed from other disciplines that may be unfamiliar to the reader and need an explanation?

Related: Ready with the background and searching for more information on journal ranking? Check this infographic on the SCImago Journal Rank today!

Is the research study unique for which additional explanation is needed? For instance, you may have used a completely new method

How to Write a Background of the Study

The structure of a background study in a research paper generally follows a logical sequence to provide context, justification, and an understanding of the research problem. It includes an introduction, general background, literature review , rationale , objectives, scope and limitations , significance of the study and the research hypothesis . Following the structure can provide a comprehensive and well-organized background for your research.

Here are the steps to effectively write a background of the study.

1. Identify Your Audience:

Determine the level of expertise of your target audience. Tailor the depth and complexity of your background information accordingly.

2. Understand the Research Problem:

Define the research problem or question your study aims to address. Identify the significance of the problem within the broader context of the field.

3. Review Existing Literature:

Conduct a thorough literature review to understand what is already known in the area. Summarize key findings, theories, and concepts relevant to your research.

4. Include Historical Data:

Integrate historical data if relevant to the research, as current issues often trace back to historical events.

5. Identify Controversies and Gaps:

Note any controversies or debates within the existing literature. Identify gaps , limitations, or unanswered questions that your research can address.

6. Select Key Components:

Choose the most critical elements to include in the background based on their relevance to your research problem. Prioritize information that helps build a strong foundation for your study.

7. Craft a Logical Flow:

Organize the background information in a logical sequence. Start with general context, move to specific theories and concepts, and then focus on the specific problem.

8. Highlight the Novelty of Your Research:

Clearly explain the unique aspects or contributions of your study. Emphasize why your research is different from or builds upon existing work.

Here are some extra tips to increase the quality of your research background:

Example of a Research Background

Here is an example of a research background to help you understand better.

The above hypothetical example provides a research background, addresses the gap and highlights the potential outcome of the study; thereby aiding a better understanding of the proposed research.

What Makes the Introduction Different from the Background?

Your introduction is different from your background in a number of ways.

• The introduction contains preliminary data about your topic that  the reader will most likely read , whereas the background clarifies the importance of the paper.
• The background of your study discusses in depth about the topic, whereas the introduction only gives an overview.
• The introduction should end with your research questions, aims, and objectives, whereas your background should not (except in some cases where your background is integrated into your introduction). For instance, the C.A.R.S. ( Creating a Research Space ) model, created by John Swales is based on his analysis of journal articles. This model attempts to explain and describe the organizational pattern of writing the introduction in social sciences.

Points to Note

Your background should begin with defining a topic and audience. It is important that you identify which topic you need to review and what your audience already knows about the topic. You should proceed by searching and researching the relevant literature. In this case, it is advisable to keep track of the search terms you used and the articles that you downloaded. It is helpful to use one of the research paper management systems such as Papers, Mendeley, Evernote, or Sente. Next, it is helpful to take notes while reading. Be careful when copying quotes verbatim and make sure to put them in quotation marks and cite the sources. In addition, you should keep your background focused but balanced enough so that it is relevant to a broader audience. Aside from these, your background should be critical, consistent, and logically structured.

Writing the background of your study should not be an overly daunting task. Many guides that can help you organize your thoughts as you write the background. The background of the study is the key to introduce your audience to your research topic and should be done with strong knowledge and thoughtful writing.

The background of a research paper typically ranges from one to two paragraphs, summarizing the relevant literature and context of the study. It should be concise, providing enough information to contextualize the research problem and justify the need for the study. Journal instructions about any word count limits should be kept in mind while deciding on the length of the final content.

The background of a research paper provides the context and relevant literature to understand the research problem, while the introduction also introduces the specific research topic, states the research objectives, and outlines the scope of the study. The background focuses on the broader context, whereas the introduction focuses on the specific research project and its objectives.

When writing the background for a study, start by providing a brief overview of the research topic and its significance in the field. Then, highlight the gaps in existing knowledge or unresolved issues that the study aims to address. Finally, summarize the key findings from relevant literature to establish the context and rationale for conducting the research, emphasizing the need and importance of the study within the broader academic landscape.

The background in a research paper is crucial as it sets the stage for the study by providing essential context and rationale. It helps readers understand the significance of the research problem and its relevance in the broader field. By presenting relevant literature and highlighting gaps, the background justifies the need for the study, building a strong foundation for the research and enhancing its credibility.

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an interesting clue here, thanks.

thanks for the answers.

Good and interesting explanation. Thanks

Thank you for good presentation.

Hi Adam, we are glad to know that you found our article beneficial

The background of the study is the key to introduce your audience to YOUR research topic.

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my understanding of ‘Background of study’ has been elevated.

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thanks to give advanced information

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When i was studying it is very much hard for me to conduct a research study and know the background because my teacher in practical research is having a research so i make it now so that i will done my research

Very informative……….Thank you.

The confusion i had before, regarding an introduction and background to a research work is now a thing of the past. Thank you so much.

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Qualitative Research : Definition

Qualitative research is the naturalistic study of social meanings and processes, using interviews, observations, and the analysis of texts and images.  In contrast to quantitative researchers, whose statistical methods enable broad generalizations about populations (for example, comparisons of the percentages of U.S. demographic groups who vote in particular ways), qualitative researchers use in-depth studies of the social world to analyze how and why groups think and act in particular ways (for instance, case studies of the experiences that shape political views).   

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• Introduction to NVivo Have you just collected your data and wondered what to do next? Come join us for an introductory session on utilizing NVivo to support your analytical process. This session will only cover features of the software and how to import your records. Please feel free to attend any of the following sessions below: April 25th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125 May 9th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125 May 30th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125
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1 Introduction

Patricia Leavy Independent Scholar Kennebunk, ME, USA

• Published: 01 July 2014
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This chapter serves as the introduction to the Oxford Handbook of Qualitative Research . The first half of the chapter responds to two questions. First, the chapter addresses the question: What is qualitative research? In answering the question, the chapter reviews the major elements of research: paradigm, ontology, epistemology (which together form the philosophical basis of research), genre, methods, theory, methodology (which operate at the level of praxis), ethics, values, and reflexivity (which merge the philosophical and praxis dimensions of research). Second, the chapter addresses the question: Who are qualitative researchers? Leavy explains qualitative research as a form of bricolage and qualitative researchers as bricoleurs. The remainder of the chapter reviews the contents of the handbook, providing a chapter by chapter summary.

We shall not cease from exploration and the end of all our exploring will be to arrive where we started and know the place for the first time. – T. S. Eliot

I open the introduction to the Oxford Handbook of Qualitative Research with the preceding quote for two reasons. First, it captures the essence of qualitative inquiry as a way of understanding, describing, explaining, unraveling, illuminating, chronicling, and documenting social life—which includes attention to the everyday, to the mundane and ordinary, as much as the extraordinary. Qualitative research can involve the study of others, but also the self and the complex relationships between, within, and among people and groups, including our own entanglements. The second reason I have begun with this quote is because it opens Laurel Richardson’s book Fields of Play: Constructing an Academic Life (1997) . This is one of my favorite books, and, in it, Richardson expands the way we think of ourselves as researchers, writers, and knowers. What I intend to do by way of sharing this is to locate myself within the field and within this text—this is something that many qualitative researchers aim to do, in various ways. In qualitative research, we are not outside of our projects, but located and shifting within them. Qualitative research is an engaged way of building knowledge about the social world and human experience, and qualitative researchers are enmeshed in their projects.

What Is Qualitative Research?

Science is a conversation between rigor and imagination. ( Abbott, 2004 , p. 3)

Qualitative research is a way of learning about social reality. Qualitative approaches to research can be used across the disciplines to study a wide array of topics. In the social and behavioral sciences, these approaches to research are often used to explore, describe, or explain social phenomenon; unpack the meanings people ascribe to activities, situations, events, or artefacts; build a depth of understanding about some aspect of social life; build “thick descriptions” (see Clifford Geertz, 1973 ) of people in naturalistic settings; explore new or underresearched areas; or make micro–macro links (illuminate connections between individuals–groups and institutional and/or cultural contexts).

Qualitative research itself is an umbrella term for a rich array of research practices and products. Qualitative research is an expansive and continually evolving methodological field that encompasses a wide range of approaches to research, as well as multiple perspectives on the nature of research itself. It has been argued that qualitative research developed in an interdisciplinary, transdisciplinary, or counterdisciplinary field ( Denzin & Lincoln, 1998 ; Jovanic, 2011 ; Lorenz, 2010 ). This approach to inquiry is unique, in part because of its philosophical and methodological diversity, as well as because of the value system guiding research practice.

The diversity of the qualitative landscape, as well as the gestalt of qualitative practice, is also partly attributable to the context in which qualitative research developed. Chapter 2 in this handbook looks much more fully at the historical development of qualitative research, but I would like to briefly note the period of growth in the 1960s and 1970s because it bears directly on the richness of contemporary qualitative practice. 2

Although there were many pivotal works published prior to the 1960s, the social justice movements of the 1960s and 1970s—the civil rights, women’s, gay rights, and peace movements—culminated in major changes in the academic landscape, including the asking of new research questions and the reframing of many previously asked research questions and corresponding approaches to research. These movements in essence became sites for new ways of thinking and led to the critique of dominant methods of scientific practice, many of which relied on positivism ( Jovanic, 2011 ). There was a drive to include people historically excluded from social research or included in ways that reinforced stereotypes and justified relations of oppression, and researchers became more cognizant of power within the research process ( Hesse-Biber & Leavy, 2011 ). A couple of decades later, interdisciplinary area studies that developed in the context of critique—women’s studies, African-American studies, Chicana/Chicano studies—began emerging across academic institutions.

Because of the sociohistorical conditions in which it developed, the qualitative tradition can be characterized by its multiplicity of approaches to research as well as by its focus on the uses to which that research might be put . In this vein, there is a social justice undercurrent to qualitative practice, one that may be implicit or explicit depending on the positioning and goals of the practitioner and the project at hand.

Many qualitative researchers define qualitative research by comparing it to quantitative research. I myself have done this. However, instead of describing what something is by explaining what it isn’t, I focus on a discussion of the qualitative tradition as understood on its own merits. 3 One way of understanding qualitative research is by considering the key dimensions of any research practice and discussing them in terms of qualitative practice.

The Elements of Research

The main dimensions of research can be categorized under three general categories: philosophical, praxis, and ethics. The philosophical substructure of research consists of three elements: paradigm, ontology, and epistemology. At the level of praxis there are four key elements of research: genre, methods, theory, and methodology. The ethical compass (which combines philosophical and praxis dimensions) includes three main elements: ethics, values, and reflexivity (see Table 1.1 ).

The Philosophical Substructure of Qualitative Research

A range of beliefs guide research practice—beliefs about how research should proceed, what can be known, who can be a knower, and how we come to know. Together, these beliefs form the philosophical substructure of research and inform all aspects of the research from topic selection to research design to the final representation and dissemination of the research findings and all phases in between.

A paradigm is a worldview through which knowledge is filtered ( Kuhn, 1962 ). In other words, it is an overarching perspective that guides the research process. I think of paradigms as sunglasses, with different color lenses. When you put a pair on, it influences everything you see. Qualitative research is multiparadigmatic, with researchers working from different worldviews (such as post-positivism, interpretivism, and critical orientations), which makes it a highly diverse field of inquiry.

An ontology is a philosophical belief system about the nature of social reality, including what we can learn about this reality and how we can do so. In their classic definition, Egon Guba and Yvonna Lincoln explained the ontological question as: “What is the form and nature of reality and, therefore, what is there that can be known about it?” (1998, p. 201). Qualitative researchers adopt a perspective that suggests knowledge building is viewed as generative and process-oriented. The truth is not absolute and ready to be “discovered” by “objective” researchers, but rather it is contingent, contextual, and multiple ( Saldaña, 2011 ). Subjectivity is acknowledged and valued. Objectivity may be redefined and achieved through the owning and disclosing of one’s values system, not disavowing it ( Hesse-Biber & Leavy, 2011 ).

If the ontological question is “What can be known?” then the epistemological question is “Who can be a knower?” An epistemology is a philosophical belief system about how research proceeds as an embodied activity, how one embodies the role of researcher, and the relationship between the researcher and research participants ( Guba & Lincoln, 1998 ; Harding, 1987 ; Hesse-Biber & Leavy, 2004 ; 2011 ). Qualitative researchers work from many different epistemological positions. Researchers may work individually or as a part of a team with their participants in the co-creation of knowledge. From this perspective, researchers are not considered neutral or objective in the traditional sense. Rather, researchers acknowledge how their personal, professional, and political commitments influence all aspects of their research. Researchers are considered instruments in qualitative research ( Bresler, 2005 ; Saldaña, 2011 ). Research participants are valued and positioned as knowledge bearers and co-creators. This position rejects a hierarchical structure between the researcher and research participants or the idea that the researcher is the sole authority.

Together, the ontological and epistemological belief systems guiding the research practice serves as the philosophical basis or substructure of any research practice ( Hesse-Biber & Leavy, 2011 ). Although a researcher’s ontological and epistemological positions can vary across qualitative projects and may be influenced by a range of other factors, including theoretical and personal commitments, generally, qualitative researchers seek to build partial and contextualized truths in collaboration with their research participants or through reflexive engagement with their research texts.

Praxis: Approaches, Methods, and Theories in Action

Praxis is the doing of research—the practice of research. Approaches, methods, and theories come into being during praxis, as researchers build projects and execute on them, often making adjustments along the way.

Genres of research are overarching categories for different ways of approaching research ( Saldaña, 2011 ). Each genre lends itself to studying particular kinds of topics and includes a range of commonly used methods of data collection, analysis, and representation. Frequently used research genres include but are not limited to field research, interview, grounded theory, unobtrusive approaches, participatory research, community-based research, arts-based research, internet research, and multimethod and mixed-method approaches. This is not an exhaustive list. The genre within which a researcher works is motivated by a combination of factors, including the research topic, the research question(s), his or her methodological preferences and experiences, and the intended audience(s) for the research, as well as by a range of pragmatic considerations such as funding, time, and the researcher’s previous experience, skills, and personal preferences.

Research methods are tools for data collection. Research methods commonly used in qualitative practice include but are not limited to ethnography, autoethnography, duoethnography, narrative inquiry, in-depth interview, semistructured interview, focus group interview, oral history, document analysis, content analysis, historical-comparative methods, poetic inquiry, audiovisual methods, visual methods, photo-voice, case study, multiple case study, discourse analysis, conversation analysis, daily diary research, program evaluation, ethnodrama, ethnotheatre, ethnocinema, play building, and fiction-based research. As you can see, qualitative researchers use a range of tools for data collection. Research methods are selected because they are the best tools to gather the data sought for a particular study. The selection of research methods should be made in conjunction with the research question(s) and purpose or objective. In other words, depending on the research topic and how the research questions are framed, as well as more pragmatic issues such as access to participants or textual/preexisting data sources, time, and practical skills, researchers are guided to particular methods.

Each genre discussed earlier lends itself to the use of particular methods. For example, the genre of arts-based research lends itself to the use of ethnodrama, ethnotheatre, ethnocinema, play building, fiction-based research, poetic inquiry, audiovisual methods, photo-voice, or visual methods. The genre of interview research lends itself to the use of in-depth interview, semistructured interview, focus group interview, or oral history. Of course, these genres are all more complicated in practice. For example, discourse analysis is a method that may be employed in an interview study, document analysis, or narrative inquiry. Furthermore, depending on the context in which one employs a method, such as narrative inquiry, one might view it as an arts-based approach, interview approach, way of doing autoethnography, or a method of analysis. The intent is not to confuse matters but, given how large and diffuse the field of qualitative research is and the variety of ways that methods can be creatively employed, it is important to understand that you may come across these terms conceptualized in various ways in the literature. One of the reasons that methods can be conceptualized and employed in many different ways is because qualitative researchers also draw on multiple theories.

A theory is an account of social reality that is grounded in empirical data but extends beyond that data. Numerous theoretical perspectives may guide the research process, including but not limited to post-positivism, interpretive, symbolic interactionism, dramaturgy, phenomenology, ethnomethodology, social constructionism, post-structuralism, post-modernism, feminism, intersectionality theory, queer theory, and critical race theory. This is also not an exhaustive list and in most instances each of these theoretical perspectives are general categories for a range of more specific theories. A qualitative research study may also yield the development of a new theory. In these instances, theory develops inductively out of the research process. In other words, the study generates data out of which a theory is built—that theory is grounded in the empirical data from that study but extends beyond that data and can be applied to other situations.

A methodology is plan for how research will proceed—combining methods and theory. The methodology is what the researcher actually does once he or she has combined the different elements of research. The methodology is informed by the philosophical beliefs guiding the research, the selection of research methods, and the use of theory. One’s attention to ethics and their corresponding values system also influences how a study is designed and how methods are employed. Although two studies may use the same research method—for instance, a focus group interview—the researchers’ methodologies may be completely different. In other words, how they proceed with the research, based not only on their data collection tool but also on how they conceive of the use of that tool and thus structure the study, determines their methodology. The level of moderation and/or control a researcher exhibits during focus group interviews can vary greatly. Methodologies are not standardized nor are they typically etched in stone. Not only will methodological approaches to research vary across projects, but, even within a particular project, methodologies are often viewed as flexible and malleable. A qualitative researcher might adjust his or her methodology over the course of a project to facilitate new learning or new insights or to adapt to unanticipated challenges, obstacles, or opportunities. The malleability of qualitative methodologies is a strength of this approach to knowledge generation.

It is important to note that although I have reviewed methods for data collection as a part of methodology, there are also methods or strategies for qualitative data analysis, interpretation, representation, and dissemination of research findings. Similar to data collection tools and theories, these too are diverse, making the methodological possibilities rich.

Ethics: Beliefs and Practices

Ethics is an area that bridges the philosophical and praxis aspects of research. Ethics play a central role in any research practice. Typically, when we think about ethics in social research, particularly when working with human subjects, we are referring to issues such as preventing harm to the people or settings involved in the study, avoiding exploitation of research participants (with added attention in the case of vulnerable populations), disclosure of the nature of the study and how the findings will be used, the voluntary nature of participation, and confidentiality. Additionally, qualitative researchers have an ethical obligation to carefully consider how research participants are portrayed and to act sensitively.

Additional ethical issues are linked to a researcher’s ontological, epistemological, and practical imperatives, which together form a researcher’s values system. For instance, the real-world value or public usefulness of the research, the inclusion of underrepresented populations, the treatment of anomalous or contradictory data, and the way that the research findings are distributed to relevant stakeholders—these issues are also connected to ethical practice.

Reflexivity is also a core concept in the qualitative community and refers to one’s attention to how power and bias come to bear during all phases of the research. As D. Soyini Madison suggests, reflexivity is about “the politics of positionality” and acknowledging our power, privileges, and biases throughout the research process (2005, p. 6). The social justice imperative of many qualitative projects is a driver of reflexivity, as are critical and power-sensitive theoretical traditions. I suggest reflexivity is both a philosophical perspective and a way of doing or acting within the context of research, from start to finish (see Table 1.2 ).

Given the wide range of approaches, tools, and values that guide qualitative research, it is a rich and evolving tradition with innumerable possibilities for knowledge building and knowledge sharing. Researchers can build, craft, or construct many different kinds of projects to study a nearly limitless range of topics. For these reasons, many consider qualitative research a craft or form of bricolage.

Who Are Qualitative Researchers?

We are all interpretive bricoleurs stuck in the present working against the past as we move into a politically charged and challenging future. ( Norman K. Denzin, 2010 , p. 15)

The qualitative researcher can be thought of as a bricoleur—someone who comfortably draws on multiple bodies of scholarship, methods, and theories to do her or his work. The term bricoleur is attributed to Levi-Strauss (1966) ; however, Denzin and Lincoln popularized applying the term to the work of qualitative researchers. Thomas A. Schwandt (2001) writes:

As a bricoleur , the qualitative inquirer is capable of donning multiple identities—researcher, scientist, artist, critic, and performer—and engaging in different kinds of bricolage that consist of particular configurations of (or ways of relating) various fragments of inherited methodologies, methods, empirical materials, perspectives, understandings, ways of presentation, situated responsiveness, and so on into a coherent, reasoned approach to a research situation and problem. The bricolage appears to vary depending on one’s allegiance to different notions of interpretation, understanding, representation, and so on drawn from various intellectual and practice traditions. (p. 20) Table 1.2 Summary of key elements of research Element .  Philosophical or Praxis .  Definition .  Paradigm Philosophical Guiding worldview Ontology Philosophical The nature of social reality and what can be known about it Epistemology Philosophical The role of the researcher and researcher/participant relationship Genres Praxis Categories of ways of approaching research Methods Praxis Tools for data collection Theory Praxis Account of social reality that extends beyond data Methodology Praxis A plan for how research will proceed (combining methods, theory, and ethics) Ethics Philosophical and Praxis How one engages with, informs, and protects participants Values System Philosophical and Praxis Usefulness and distribution to the public, inclusion of underrepresented groups Reflexivity Philosophical and Praxis Attention to power, bias, and researcher positionality Element .  Philosophical or Praxis .  Definition .  Paradigm Philosophical Guiding worldview Ontology Philosophical The nature of social reality and what can be known about it Epistemology Philosophical The role of the researcher and researcher/participant relationship Genres Praxis Categories of ways of approaching research Methods Praxis Tools for data collection Theory Praxis Account of social reality that extends beyond data Methodology Praxis A plan for how research will proceed (combining methods, theory, and ethics) Ethics Philosophical and Praxis How one engages with, informs, and protects participants Values System Philosophical and Praxis Usefulness and distribution to the public, inclusion of underrepresented groups Reflexivity Philosophical and Praxis Attention to power, bias, and researcher positionality Open in new tab

Qualitative researchers may draw on scientific, humanistic, artistic, and other disciplinary forms. In this regard, qualitative research can be viewed as a scholarly, practical, and creative pursuit. Researchers need to be able to think analytically, symbolically, imaginatively, and metaphorically ( Saldaña, 2011 ). Moreover, projects often demand innovation, creativity, intuition, flexibility, and responsiveness (adapting to new learning or practical problems). This is a rigorous and often labor-intensive process. Qualitative research commonly requires working with others over an expanse of time and producing large amounts of data for analysis while also demanding sustained attention to ethics and values. It is also a creative process—allowing researchers to experiment, play, adapt, learn, and grow along the way.

Of course, pragmatic considerations come into play when designing a project: funding, time, access to needed participants or textual/preexisting data sources, and the researcher’s previous experience, skills, and personal preferences. Unfortunately, qualitative researchers are more often limited by practical issues than by their imaginative capabilities.

Despite these challenges, qualitative research is also a deeply rewarding process that may result in new learning about topics of import, increased self-awareness, the forging of meaningful relationships between co-creators of knowledge, the production of public scholarship, and the impetus for social change.

The Contents of This Handbook

As noted in the preface, no handbook can be all things to all people. It’s impossible to cover the entire field, and so I have approached the content with practicality in mind: what one learning about and/or embarking on qualitative research most needs to know, peppered with advanced material and prospective reviews intended to be of value to even the most experienced researchers.

Part 1 of this handbook, “The Qualitative Tradition,” offers a historical review of the field. Specifically, Part 1 presents an overview of the history of qualitative research in the social sciences and the ethical substructure of qualitative research practice.

In Chapter 2 , “Historical Overview of Qualitative Research in the Social Sciences,” Svend Brinkmann, Michael Hviid Jacobsen, and Søren Kristiansen provide a detailed history of qualitative research in the social sciences. As they note, this history is a complicated task because there is no agreed-upon version but rather a variety of perspectives. Accordingly, these authors present six histories of qualitative research: the conceptual history, the internal history, the marginalizing history, the repressed history, the social history, and the technological history. They also suggest that writing about history is necessarily tied up with writing about the future and thus conclude their contribution with a vision of the field. In Chapter 3 , “The History of Historical-Comparative Methods in Sociology,” Chares Demetriou and Victor Roudometof present an overview of the historical trajectory of comparative-historical sociology while considering the development of specific methodological approaches. Next is Anna Traianou’s chapter, “The Centrality of Ethics in Qualitative Research.” Attention to the ethical substructure of research is central to any qualitative practice and thus is given priority as the closing chapter in Part 1 . Traianou details the main ethical issues in qualitative practice, bearing in mind the changing sociohistorical climate in which research is carried out.

Part 2 of this handbook, “Approaches to Qualitative Research,” presents an array of philosophical approaches to qualitative research (all of which have implications for research praxis). Because qualitative research is a diverse tradition, it is impossible to adequately cover all of the approaches researchers may adopt. Nevertheless, Part 2 provides both an overview of the key approaches to qualitative research and detailed reviews of several commonly used approaches.

Part 2 opens with Renée Spencer, Julia M. Pryce, and Jill Walsh’s chapter, “Philosophical Approaches to Qualitative Research,” which provides a general view of the philosophical approaches that typically guide qualitative practice. They review post-positivism, constructivism, critical theory, feminism, and queer theory and offer a brief history of these approaches, considering the ontological, epistemological, and axiological assumptions on which they rest, and they detail some of their distinguishing features. They also identify three overarching, interrelated, and contested issues with which the field is being confronted: retaining the rich diversity that has defined the field, the articulation of recognizable standards for qualitative research, and the commensurability of differing approaches.

After the overview in Chapter 5 , we turn to in-depth treatments of specific approaches to qualitative research. In Chapter 6 , “Applied Interpretive Approaches,” Sally E. Thorne turns to the applied world of qualitative practice. Thorne considers how many applied scholars have been departing from established method to articulate approaches better suited to the questions of the applied world. This chapter considers the evolving relationship between the methods and their disciplinary origins and current trends in the direction of the applied interpretive qualitative project. Interpretive description is used as a methodological case in point to illustrate the kinds of departures that applied approaches are taking from their theoretical roots as they begin to advance knowledge development within applied contexts.

Chapter 7 , “The Grounded Theory Method” by Antony Bryant, reviews grounded theory, which, as Bryant notes, is itself a somewhat misleading term because it actually refers to a method that facilitates the development of new theoretical insights. Bryant’s suggestion about the complexity of the term itself is duly noted because this chapter could easily have been placed in Part 3 of this handbook. However, because grounded theory can be used in conjunction with more than one method of data collection, I have placed it in Part 2 as an approach to research. This chapter provides background information about the development of grounded theory as well as its main features, procedures outputs, and evaluation criteria.

The final three chapters in Part 2 tackle power-sensitive or social justice approaches to qualitative research that have emerged in the context of activist and scholarly work. In Chapter 8 , “Feminist Qualitative Research: Toward Transformation of Science and Society,” Maureen C. McHugh offers an in-depth treatment of feminist qualitative research, described in terms of its purposes of addressing women’s lives, advocacy for women, analysis of gender oppression, and transformation of society. The chapter covers topics including the feminist critiques of social science research, the transformation of science from empiricism to post-modernism (including intersectionality and double consciousness), reflexivity, collaboration, power analysis, advocacy, validity, and voice. Several qualitative approaches to research are described in relation to feminist research goals, with illustrations of feminist research. In Chapter 9 , “Critical Approaches to Qualitative Research,” Kum-Kum Bhavnani, Peter Chua, and Dana Collins reflect on critical strategies in qualitative research and examine the meanings and debates associated with the term “critical.” The authors contrast liberal and dialectical notions and practices in relations to social analysis and qualitative research. The chapter also explores how critical social research may be synonymous with critical ethnography in relation to issues of power, positionality, representation, and the production of situated knowledges. It uses Bhavnani’s (1993) framework to draw on Dana Collin’s research as a specific case to suggest how the notion of the “critical” relates to ethnographic research practices: ensuring feminist and queer accountability, resisting reinscription, and integrating lived experience. In Chapter 10 , “Decolonizing Research Practice: Indigenous Methodologies, Aboriginal Methods, and Knowledge/Knowing,” Mike Evans, Adrian Miller, Peter Hutchinson, and Carlene Dingwall review Indigenous approaches to research that are fundamentally rooted in the traditions and knowledge systems of Indigenous peoples themselves. The authors suggest Indigenous methodologies and methods have become both systems for generating knowledge and ways of responding to the processes of colonization. They describe two approaches drawn from the work of two Indigenous scholars with their communities in Australia and Canada. They hope this work leads not only to better, more pertinent research that is well disseminated but also to improvement in the situations of Indigenous communities and peoples.

The third section of this handbook, “Narrative Inquiry, Field Research, and Interview Methods,” provides chapters on a range of methods for collecting data directly from people (groups or individuals) or by systematically observing people engaged in activities in natural settings.

Part 3 begins with Chapter 11 , “Practicing Narrative Inquiry,” by Arthur P. Bochner and Nicholas A. Riggs. Arguably, this is a chapter that could have appeared just as easily in Part 2 because narrative is as much an approach to research as a method, or in Part 4 because narrative inquiry can be employed in the context of text- or arts-based research, or even in Part 6 as an approach to analysis. This chapter focuses on the development of the turn toward narrative in the human sciences. The authors trace the rise of narrative inquiry as it evolved in the aftermath of the crisis of representation in the social sciences, locating the explosion of interest in stories and storytelling in changing population demographics and the debunking of venerable notions about scientific knowledge. They show how narrative inquiry offered an opportunity to humanize the human sciences, placing people, meaning, and personal identity at the center of inquiry; inviting the development of reflexive, relational, dialogic, and interpretive methodologies; and drawing attention to the need to focus not only on the actual but also on the possible and the good. The chapter attempts to synthesize the changing methodological orientations of qualitative researchers associated with narrative inquiry, as well as their ethical commitments. In the second half of the chapter, the focus shifts to the divergent standpoints of small-story and big-story researchers; the differences between narrative analysis and narratives-under-analysis; and various narrative practices that seek to help people form better relationships, overcome oppressive canonical identities, amplify or reclaim moral agency, and cope better with contingencies and difficulties experienced over the course of life.

Chapter 12 , “Ethnography,” by Anthony Kwame Harrison, presents a new take on a classic method of qualitative research. Embracing the trope of ethnography-as-narrative, this chapter uses the mythic story of Bronislaw Malinowski’s—the reputed “founding father” of the ethnographic approach—early career and fieldwork as a vehicle through which to explore key aspects of ethnography’s history and development into a distinct form of qualitative research. Through a series of intervallic steps—in and out of Malinowski’s path from Poland to the “Cambridge School” and eventually to the western Pacific—Harrison traces the legacy of ethnography to its current position as a critical, historically informed, and unfailingly evolving research endeavor. Harrison suggests that, as a method continually reflected on and revised, ethnography is boundless.

In Chapter 13 , “The Purposes, Practices, and Principles of Autoethnographic Research,” Carolyn Ellis and Tony E. Adams define autoethnography according to their practice of the method, and they describe its history and emergence within qualitative social research and within psychology. They propose general guiding principles for those seeking to do autoethnography, such as using personal experience, acknowledging existing research, understanding and critiquing cultural experience, using insider knowledge, breaking silence, and maneuvering through pain, confusion, anger, and uncertainty. They present autoethnography as a process and as a product, one that can take a variety of representational forms. After offering ways to evaluate and critique autoethnography, they conclude with a discussion of autoethnography as an orientation to the living of life and an approach that has the potential of making life better—for the writer, reader, participant, and larger culture.

Switching gears from generating data from one’s own experiences to interviewing others, the next three chapters detail different methods of interview. Chapter 14 , “Unstructured and Semistructured Interviewing,” by Svend Brinkmann, provides an introduction to qualitative interviewing as a social practice with a cultural history. Issues addressed include different levels of structure, numbers of participants, media of interviewing, and also interviewer styles. A more detailed exposition of semistructured life world interviewing is offered, as Brinkmann suggests this is arguably the standard form of qualitative interviewing today. The next chapter is “Oral History Interviewing: Issues and Possibilities” by Valerie J. Janesick. As she explains, oral history resides in storytelling and involves the collection of stories, statements, and reminiscences of a person or persons who have firsthand knowledge of any number of experiences. Oral history offers qualitative researchers a way to capture the lived experiences of participants. The techniques of oral history may include interviews, document analysis, photographs, and video. Three major issues that emerge are those of social justice, arts-based approaches to oral history, and transdisciplinarity. Janesick notes that, in the current climate, there are endless possibilities in terms of using digital techniques for data presentation, data analysis, and dissemination. In Chapter 16 , “Focus Group Research: Retrospect and Prospect,” by George Kamberelis and Greg Dimitriadis, we turn to a method of group interviewing. First, the authors highlight the historical origins, tensions, and continuities/discontinuities of focus group research. Second, they suggest that focus group research embodies three primary, related functions: an inquiry function, a pedagogical function, and a political function. Third, they explore issues including mitigating the researcher’s authority; disclosing the constitutive power of discourse; approximating the natural; filling in knowledge gaps and saturating understanding; drawing out complexity, nuance, and contradiction; disclosing eclipsed connections; and creating opportunities for political activism. Fourth, they discuss contemporary threats to focus group work, and they conclude with what they see as new research frontiers for focus group research, especially in relation to new information technologies.

Part 3 concludes with Erica Tucker’s chapter “Museum Studies” which, as an entire area of study, arguably could have been placed in other sections of the handbook (such as the next section on multimethod research). However, given that museum studies often involve ethnographic observations in natural settings, I conclude Part 3 with this chapter. Tucker reviews the major research methods used to study museums, including gallery analyses and interviews with museum visitors, professionals, and stakeholders, as well as ethnographic fieldwork. Drawing from a range of case studies conducted by museum practitioners, anthropologists, historians, and other museum studies scholars, the author explores how these qualitative methods can be adapted to the study of exhibits, programs, and museums as knowledge-generating institutions. Approaches to research design, data analyses, and representation are also examined.

The next section of the handbook, “Text, Arts-Based, and Internet Methods,” considers how qualitative researchers work with nonliving data or through mediated forms. Although these methods are at times considered unobtrusive (because the data exist independent of the research; e.g., in the case of content analyzing newspapers), there are also many participatory approaches that are considered (such as participatory arts-based research).

Chapter 18 , “Content Analysis,” by Lindsay Prior, focuses on the ways in which content analysis can be used to investigate and describe interview and textual data. The author considers the method in both qualitative and quantitative social research. Examples of four different kinds of data are subjected to content analysis. Using a distinctive style of content analysis that calls on the notion of semantic networks, Prior shows how the method can be used either independently or in conjunction with other forms of inquiry (including various styles of discourse analysis) to analyze data and also how it can be used to verify and underpin claims that arise out of analysis. The chapter ends with an overview of the different ways in which the study of “content”—especially the study of document content—can be positioned in social scientific research projects.

Chapter 19 , “Photography as a Research Method,” by Gunilla Holm, reviews the development of photography as a research method in social sciences. Holm describes the different types of photographs used, such as archival photographs, photographs taken by the researcher, and photographs taken by participants. The uses of different approaches to obtain photographs and issues of interest concerning each approach are presented. The most common approaches to analyze photographs, such as content analysis, discourse analysis, and ethnographic analysis, are described. Questions surrounding interpretation and ethical practice are also considered.

Chapter 20 , “Arts-Based Research Practice: Merging Social Research and the Creative Arts,” by Gioia Chilton and Patricia Leavy, offers an overview of the emerging genre of arts-based research (ABR). ABR adapts the tenets of the creative arts in social research in order to approach research questions in new ways, ask new questions, and make research findings publicly accessible, evocative, and engaged. The authors provide a retrospective and prospective overview of the field, including a review of the some of the pioneers of ABR, methodological principles, robust examples of ABR within different artistic genres, assessment criteria, and the future of the field.

The final chapter in this section of the handbook is “Qualitative Approaches in Internet-Mediated Research: Opportunities, Issues, Possibilities” by Claire Hewson. Internet-mediated research (IMR) has grown expansively over the past decade, in both its scope and range of methodological possibilities and in its breadth of penetration across disciplines and research domains. However, the use of IMR approaches to support qualitative research has lagged behind its application in supporting quantitative methods. This chapter discusses the possibilities and scope for using IMR methods in qualitative research and considers some of the issues and debates that have led some qualitative researchers to be reluctant to consider this approach as a viable alternative to traditional offline methods. Hewson adopts an optimistic stance on the potential for qualitative IMR and outlines a range of possible methods and strategies, punctuated with examples of successful (as well as less successful) studies. The chapter also covers practical issues and offers a commentary on the possible future of IMR.

Part 5 of the handbook, “Multimethod, Mixed Method, and Participatory Designs,” focuses on approaches to research that typically rely on the use of more than one method of data collection and/or the participation of nonacademic stakeholders. Several of the chapters in this section could easily have been placed in Part 2 of the handbook because they can be viewed as “approaches” to research. Again, this illustrates how fluid the field of qualitative research is, with its overlaps in definitions and practice. Notwithstanding the suggestion that some of these chapters cover broad approaches to research, I have placed them in this section of the handbook because they generally involve the use of more than one method.

Chapter 22 , “Case Study Research: In-Depth Understanding in Context,” by Helen R. Simons, explores case study as a major approach to research and evaluation. After first noting various contexts in which case studies are commonly used, the chapter focuses on case study research directly. Strengths and potential problematic issues are outlined, as are key phases of the process. The chapter emphasizes how important it is to design the case, to collect and interpret data in ways that highlight the qualitative, to have an ethical practice that values multiple perspectives and political interests, and to report creatively to facilitate use in policy making and practice. Finally, the chapter explores how to generalize from the singular case. Concluding questions center on the need to think more imaginatively about design and the range of methods and forms of reporting available to persuade audiences to value qualitative ways of knowing in case study research.

In Chapter 23 , “Program Evaluation,” Paul R. Brandon and Anna L. Ah Sam offer a detailed overview of program evaluation situated in the historical context in which this practice has developed. The chapter includes discussion regarding the choice of methods, some of which are used primarily within evaluation approaches to conducting evaluation; the aspects of programs that evaluators typically address; the concept of value; the differences between evaluation and social science research; research on evaluation topics; and the major evaluation issues and concerns that have dominated discussion in the literature.

The following two chapters cover approaches to research that involve community participation. Chapter 24 “Community-Based Research: Understanding the Principles, Practices, Challenges, and Rationale,” by Margaret R. Boyd, reviews the inclusion of community members in research practice. This chapter is an introduction to the historical roots and subdivisions within community-based research (CBR) and discusses the core principles and skills useful when designing and working with community members in a collaborative, innovative, and transformative research partnership. The rationale for working within this research paradigm is discussed as are the challenges researchers and practitioners face when conducting CBR. Boyd suggests CBR challenges the traditional research paradigm by recognizing that complex social problems must involve multiple stakeholders in the research process—not as subjects but as co-investigators and co-authors. It is an “orientation to inquiry” rather than a methodology and reflects a transdisciplinary paradigm by including academics from many different disciplines, community members, activists, and often students in all stages of the research process. As the scholarship and practice of this form of research has increased dramatically over the past twenty years, this chapter looks at both new and emerging issues, as well as at founding questions that continue to draw debate in the contemporary discourse. In Chapter 25 , “Lineages: A Past, Present, and Future of Participatory Action Research,” Sarah Zeller-Berkman provides a historical overview of participatory action research (PAR). Like CBR, this is a social justice–oriented approach to research that transcends method but relies on a variety of qualitative methods. Zeller-Berkman writes that PAR in the twenty-first century asserts a democratization of who has the right to create knowledge, research social conditions, engage in participatory processes, and take action. People using PAR generally believe that knowledge has and will continue to be a source of power. Participatory research is an attempt to shift the balance of power back in favor of people who have historically been denied representational power.

The next chapter in the handbook covers the methodological work being done in the content area of disaster research. 4 In “Qualitative Disaster Research,” Brenda D. Phillips provides an overview of the history of qualitative disaster research since the 1920s. Challenges associated with conducting disaster research, particularly field-based studies, are presented. The chapter also discusses ethical challenges related to homeland security and the emotional impacts of disaster research on humans. Sections then lay out issues specific to the life cycle of disasters (preparedness, response, mitigation, and recovery), data gathering techniques commonly used (interviews, documents, observations, visual data), and strategies for data analysis. A final section links efforts to strengthen the trustworthiness and credibility of qualitative research to disaster studies.

The final chapter in this section of the handbook covers mixed-methods research. In Chapter 27 , “Conducting Mixed-Methods Research: Using Dialectical Pluralism and Social Psychological Strategies,” R. Burke Johnson, Tony Onwuegbuzie, Susan Tucker, and Marjorie L. Icenogle first summarize the philosophy of dialectical pluralism (DP). Ontologically, DP views reality as plural and changing. Epistemologically, DP follows a dialectical, dialogical, hermeneutical approach to listening, interacting, and learning from “the other.” Theoretically, DP integrates concepts especially from Rawls (e.g., procedural justice, reasonable pluralism, overlapping consensus, realistic utopia), Dewey (e.g., deliberative democracy, community, inquiry, growth), and Habermas (e.g., communicative rationality, deliberative democracy, discourse ethics, knowledge, public sphere). From empirical research, the authors draw on concepts and findings from social psychological literatures such as conflict management, negotiation, small-group psychology, group counseling, group dynamics, political diplomacy, deliberative democracy, and workplace justice. Dialectal pluralism requires purposeful construction of teams that include multiple/different values and perspectives and stakeholders from the most disadvantaged affected groups. The group process operates from the position of equal power, the use of social psychological strategies, and the working toward win-win solutions.

Part 6 of the handbook, “Analysis, Interpretation, Representation, and Evaluation,” covers a range of topics, including the analysis and interpretation of qualitative data, writing up qualitative research, and issues pertaining to evaluation.

The first two chapters in this section review qualitative data analysis. Chapter 28 , “Coding and Analysis Strategies,” by Johnny Saldaña, provides an overview of selected qualitative data analytic strategies, with a particular focus on codes and coding. Preparatory strategies for a qualitative research study and data management are first outlined. Six coding methods are then profiled using comparable interview data: process coding, in vivo coding, descriptive coding, values coding, dramaturgical coding, and versus coding. Strategies for constructing themes and assertions from the data then follow. Analytic memo writing is woven throughout the preceding as a method for generating additional analytic insight. Next, display- and arts-based strategies are provided, followed by recommended qualitative data analytic software programs and a discussion on verifying the researcher’s analytic findings. Chapter 29 , “Computer-Assisted Analysis of Qualitative Research,” by Christina Silver and Ann F. Lewins, picks up on the discussion of qualitative data analytic software programs (although it should be noted that this chapter also considers how technology can be used in data collection). Silver and Lewins focus on the current state of technological support for qualitative research practice. The chapter focuses on technology and how it assists three main aspects of qualitative research: data collection, preparation, and/or transcription; bibliographic management and systematic literature reviews; and data management and analysis. The main body of the chapter discusses the functionality, role, and implications of Computer Assisted Qualitative Data AnalysiS (CAQDAS) tools. Three recent trends in computer assistance are emphasized: support for visual analysis, support for mixed-methods approaches, and online solutions.

Moving from data analysis to interpretation, Chapter 30 , “Interpretation Strategies: Appropriate Concepts,” by Allen Trent and Jeasik Cho, presents a wide range of concepts related to interpretation in qualitative research. The chapter examines the meaning and importance of interpretation in qualitative inquiry and explores the ways methodology, data, and the self/researcher as instrument interact and impact interpretive processes. Additionally, the chapter presents a series of strategies for qualitative researchers engaged in the process of interpretation. The chapter closes by presenting a framework for qualitative researchers designed to inform their interpretations. The framework includes attention to the key qualitative research concepts transparency, reflexivity, analysis, validity, evidence, and literature. Four questions frame the chapter: What is interpretation and why are interpretive strategies important in qualitative research? How do methodology, data, and the researcher/self impact interpretation in qualitative research? How do qualitative researchers engage in the process of interpretation? And, in what ways can a framework for interpretation strategies support qualitative researchers across multiple methodologies and paradigms?

Chapter 31 , “Writing Up Qualitative Research,” by Jane Gilgun, provides guidelines for writing journal articles based on qualitative approaches. The guidelines are a part of the tradition of the Chicago School of Sociology and the author’s experience as an author and reviewer. The guidelines include understanding experiences in context, immersion, interpretations grounded in accounts of informants’ lived experiences, and conceiving of research as action-oriented. Gilgun suggests excellent write-ups have “grab”; that is, accounts that jump off the page and convey a sense of lived experiences. Although most of the chapter addresses the writing of conventional research reports, there is some coverage of writing articles that report findings resulting from ethnographies, autoethnographies, performances, poetry, and photography and other media.

The final chapter in this section of the handbook, “Evaluating Qualitative Research,” by Jeasik Cho and Allen Trent, addresses a wide range of theories and practices related to the evaluation of qualitative research (EQR). The authors present six categories of EQR: (1) a positivist category; (2) Lincoln and Guba’s alternative category; (3) a “subtle-realist” category developed by Hammersley, Atkinson, and Seale; (4) a general EQR category; (5) a category of post-criteriology; and (6) a post-validity category. The authors offer several evaluation strategies for EQR by providing a variety of examples. They also discuss a path forward for EQR. They conclude with a holistic view of EQR needed to collectively construct/confront inner and outer challenges to qualitative paradigms in the twenty-first century.

The final section of the handbook, “Conclusion: Politics and The Public,” offers some final thoughts about the politics of qualitative research, the importance of public scholarship, and the future of qualitative research in a transdisciplinary context.

In Chapter 33 , “The Politics of Research,” Michael D. Giardina and Joshua I. Newman critically interrogate the politics of research currently dominating US higher education, a politics that is shaped as much by theoretical and methodological questions and debates as it is by prevailing social, cultural, political, and economic forces. The authors’ arguments are guided by four primary questions: How and to what do the cultural and political priorities of the free-marketized, corporate university impact, direct, or confound the conduct of research? How and to what extent does politics situate methodologies? How and to what extent is the research act impinged on by such particularities as institutional review boards, national funding councils, scholarly journals, and the promotion and tenure process? And, how and where do we as academics fit into this new research climate? Giardina and Newman also provide a series of practical recommendations for professors and students alike who seek to actively confront and challenge the academic–industrial complex.

The closing chapter, “A Brief Statement on the Public and the Future of Qualitative Research,” offers some final comments about the future of qualitative research. I suggest that there is a widespread move from a disciplinary to a transdisciplinary research structure in which problems of importance are at the center of research practices (see Leavy, 2011 ). Within this context, qualitative researchers are well positioned to advance because of their ability to develop responsive and flexible research designs and present their work in multiple formats. Furthermore, I note how the broader move toward public scholarship is propelling both the practice of qualitative research and the teaching of qualitative methods.

Thank you to Dr. Tony Adams for providing his thoughtful and most helpful feedback on an earlier draft of this chapter.

There is qualitative work that can be pointed to in the late 1800s and early 1900s. However, it was the use of ethnography and related methods in the 1920s by researchers at the University of Chicago who were primarily studying urbanization (popularly deemed “The Chicago School of Sociology”) that prompted the use of qualitative methods in sociology departments around the United States. In the 1960s, the qualitative tradition fully emerged.

Chapter 2 of this handbook, “Historical Overview of Qualitative Research in the Social Sciences,” by Brinkmann, Jacobsen, and Kristiansen, provides a rich discussion of the history of qualitative research in relation to quantitative research.

There has been little documentation of the methodological work done in this field and therefore this chapter represents a significant contribution to the literature on both qualitative research and disaster studies.

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Chapter 1. Introduction

“Science is in danger, and for that reason it is becoming dangerous” -Pierre Bourdieu, Science of Science and Reflexivity

Why an Open Access Textbook on Qualitative Research Methods?

I have been teaching qualitative research methods to both undergraduates and graduate students for many years.  Although there are some excellent textbooks out there, they are often costly, and none of them, to my mind, properly introduces qualitative research methods to the beginning student (whether undergraduate or graduate student).  In contrast, this open-access textbook is designed as a (free) true introduction to the subject, with helpful, practical pointers on how to conduct research and how to access more advanced instruction.  

Textbooks are typically arranged in one of two ways: (1) by technique (each chapter covers one method used in qualitative research); or (2) by process (chapters advance from research design through publication).  But both of these approaches are necessary for the beginner student.  This textbook will have sections dedicated to the process as well as the techniques of qualitative research.  This is a true “comprehensive” book for the beginning student.  In addition to covering techniques of data collection and data analysis, it provides a road map of how to get started and how to keep going and where to go for advanced instruction.  It covers aspects of research design and research communication as well as methods employed.  Along the way, it includes examples from many different disciplines in the social sciences.

The primary goal has been to create a useful, accessible, engaging textbook for use across many disciplines.  And, let’s face it.  Textbooks can be boring.  I hope readers find this to be a little different.  I have tried to write in a practical and forthright manner, with many lively examples and references to good and intellectually creative qualitative research.  Woven throughout the text are short textual asides (in colored textboxes) by professional (academic) qualitative researchers in various disciplines.  These short accounts by practitioners should help inspire students.  So, let’s begin!

What is Research?

When we use the word research , what exactly do we mean by that?  This is one of those words that everyone thinks they understand, but it is worth beginning this textbook with a short explanation.  We use the term to refer to “empirical research,” which is actually a historically specific approach to understanding the world around us.  Think about how you know things about the world. [1] You might know your mother loves you because she’s told you she does.  Or because that is what “mothers” do by tradition.  Or you might know because you’ve looked for evidence that she does, like taking care of you when you are sick or reading to you in bed or working two jobs so you can have the things you need to do OK in life.  Maybe it seems churlish to look for evidence; you just take it “on faith” that you are loved.

Only one of the above comes close to what we mean by research.  Empirical research is research (investigation) based on evidence.  Conclusions can then be drawn from observable data.  This observable data can also be “tested” or checked.  If the data cannot be tested, that is a good indication that we are not doing research.  Note that we can never “prove” conclusively, through observable data, that our mothers love us.  We might have some “disconfirming evidence” (that time she didn’t show up to your graduation, for example) that could push you to question an original hypothesis , but no amount of “confirming evidence” will ever allow us to say with 100% certainty, “my mother loves me.”  Faith and tradition and authority work differently.  Our knowledge can be 100% certain using each of those alternative methods of knowledge, but our certainty in those cases will not be based on facts or evidence.

For many periods of history, those in power have been nervous about “science” because it uses evidence and facts as the primary source of understanding the world, and facts can be at odds with what power or authority or tradition want you to believe.  That is why I say that scientific empirical research is a historically specific approach to understand the world.  You are in college or university now partly to learn how to engage in this historically specific approach.

In the sixteenth and seventeenth centuries in Europe, there was a newfound respect for empirical research, some of which was seriously challenging to the established church.  Using observations and testing them, scientists found that the earth was not at the center of the universe, for example, but rather that it was but one planet of many which circled the sun. [2]   For the next two centuries, the science of astronomy, physics, biology, and chemistry emerged and became disciplines taught in universities.  All used the scientific method of observation and testing to advance knowledge.  Knowledge about people , however, and social institutions, however, was still left to faith, tradition, and authority.  Historians and philosophers and poets wrote about the human condition, but none of them used research to do so. [3]

It was not until the nineteenth century that “social science” really emerged, using the scientific method (empirical observation) to understand people and social institutions.  New fields of sociology, economics, political science, and anthropology emerged.  The first sociologists, people like Auguste Comte and Karl Marx, sought specifically to apply the scientific method of research to understand society, Engels famously claiming that Marx had done for the social world what Darwin did for the natural world, tracings its laws of development.  Today we tend to take for granted the naturalness of science here, but it is actually a pretty recent and radical development.

To return to the question, “does your mother love you?”  Well, this is actually not really how a researcher would frame the question, as it is too specific to your case.  It doesn’t tell us much about the world at large, even if it does tell us something about you and your relationship with your mother.  A social science researcher might ask, “do mothers love their children?”  Or maybe they would be more interested in how this loving relationship might change over time (e.g., “do mothers love their children more now than they did in the 18th century when so many children died before reaching adulthood?”) or perhaps they might be interested in measuring quality of love across cultures or time periods, or even establishing “what love looks like” using the mother/child relationship as a site of exploration.  All of these make good research questions because we can use observable data to answer them.

What is Qualitative Research?

“All we know is how to learn. How to study, how to listen, how to talk, how to tell.  If we don’t tell the world, we don’t know the world.  We’re lost in it, we die.” -Ursula LeGuin, The Telling

At its simplest, qualitative research is research about the social world that does not use numbers in its analyses.  All those who fear statistics can breathe a sigh of relief – there are no mathematical formulae or regression models in this book! But this definition is less about what qualitative research can be and more about what it is not.  To be honest, any simple statement will fail to capture the power and depth of qualitative research.  One way of contrasting qualitative research to quantitative research is to note that the focus of qualitative research is less about explaining and predicting relationships between variables and more about understanding the social world.  To use our mother love example, the question about “what love looks like” is a good question for the qualitative researcher while all questions measuring love or comparing incidences of love (both of which require measurement) are good questions for quantitative researchers. Patton writes,

Qualitative data describe.  They take us, as readers, into the time and place of the observation so that we know what it was like to have been there.  They capture and communicate someone else’s experience of the world in his or her own words.  Qualitative data tell a story. ( Patton 2002:47 )

Qualitative researchers are asking different questions about the world than their quantitative colleagues.  Even when researchers are employed in “mixed methods” research ( both quantitative and qualitative), they are using different methods to address different questions of the study.  I do a lot of research about first-generation and working-college college students.  Where a quantitative researcher might ask, how many first-generation college students graduate from college within four years? Or does first-generation college status predict high student debt loads?  A qualitative researcher might ask, how does the college experience differ for first-generation college students?  What is it like to carry a lot of debt, and how does this impact the ability to complete college on time?  Both sets of questions are important, but they can only be answered using specific tools tailored to those questions.  For the former, you need large numbers to make adequate comparisons.  For the latter, you need to talk to people, find out what they are thinking and feeling, and try to inhabit their shoes for a little while so you can make sense of their experiences and beliefs.

Examples of Qualitative Research

You have probably seen examples of qualitative research before, but you might not have paid particular attention to how they were produced or realized that the accounts you were reading were the result of hours, months, even years of research “in the field.”  A good qualitative researcher will present the product of their hours of work in such a way that it seems natural, even obvious, to the reader.  Because we are trying to convey what it is like answers, qualitative research is often presented as stories – stories about how people live their lives, go to work, raise their children, interact with one another.  In some ways, this can seem like reading particularly insightful novels.  But, unlike novels, there are very specific rules and guidelines that qualitative researchers follow to ensure that the “story” they are telling is accurate , a truthful rendition of what life is like for the people being studied.  Most of this textbook will be spent conveying those rules and guidelines.  Let’s take a look, first, however, at three examples of what the end product looks like.  I have chosen these three examples to showcase very different approaches to qualitative research, and I will return to these five examples throughout the book.  They were all published as whole books (not chapters or articles), and they are worth the long read, if you have the time.  I will also provide some information on how these books came to be and the length of time it takes to get them into book version.  It is important you know about this process, and the rest of this textbook will help explain why it takes so long to conduct good qualitative research!

Example 1 : The End Game (ethnography + interviews)

Corey Abramson is a sociologist who teaches at the University of Arizona.   In 2015 he published The End Game: How Inequality Shapes our Final Years ( 2015 ). This book was based on the research he did for his dissertation at the University of California-Berkeley in 2012.  Actually, the dissertation was completed in 2012 but the work that was produced that took several years.  The dissertation was entitled, “This is How We Live, This is How We Die: Social Stratification, Aging, and Health in Urban America” ( 2012 ).  You can see how the book version, which was written for a more general audience, has a more engaging sound to it, but that the dissertation version, which is what academic faculty read and evaluate, has a more descriptive title.  You can read the title and know that this is a study about aging and health and that the focus is going to be inequality and that the context (place) is going to be “urban America.”  It’s a study about “how” people do something – in this case, how they deal with aging and death.  This is the very first sentence of the dissertation, “From our first breath in the hospital to the day we die, we live in a society characterized by unequal opportunities for maintaining health and taking care of ourselves when ill.  These disparities reflect persistent racial, socio-economic, and gender-based inequalities and contribute to their persistence over time” ( 1 ).  What follows is a truthful account of how that is so.

Cory Abramson spent three years conducting his research in four different urban neighborhoods.  We call the type of research he conducted “comparative ethnographic” because he designed his study to compare groups of seniors as they went about their everyday business.  It’s comparative because he is comparing different groups (based on race, class, gender) and ethnographic because he is studying the culture/way of life of a group. [4]   He had an educated guess, rooted in what previous research had shown and what social theory would suggest, that people’s experiences of aging differ by race, class, and gender.  So, he set up a research design that would allow him to observe differences.  He chose two primarily middle-class (one was racially diverse and the other was predominantly White) and two primarily poor neighborhoods (one was racially diverse and the other was predominantly African American).  He hung out in senior centers and other places seniors congregated, watched them as they took the bus to get prescriptions filled, sat in doctor’s offices with them, and listened to their conversations with each other.  He also conducted more formal conversations, what we call in-depth interviews, with sixty seniors from each of the four neighborhoods.  As with a lot of fieldwork , as he got closer to the people involved, he both expanded and deepened his reach –

By the end of the project, I expanded my pool of general observations to include various settings frequented by seniors: apartment building common rooms, doctors’ offices, emergency rooms, pharmacies, senior centers, bars, parks, corner stores, shopping centers, pool halls, hair salons, coffee shops, and discount stores. Over the course of the three years of fieldwork, I observed hundreds of elders, and developed close relationships with a number of them. ( 2012:10 )

When Abramson rewrote the dissertation for a general audience and published his book in 2015, it got a lot of attention.  It is a beautifully written book and it provided insight into a common human experience that we surprisingly know very little about.  It won the Outstanding Publication Award by the American Sociological Association Section on Aging and the Life Course and was featured in the New York Times .  The book was about aging, and specifically how inequality shapes the aging process, but it was also about much more than that.  It helped show how inequality affects people’s everyday lives.  For example, by observing the difficulties the poor had in setting up appointments and getting to them using public transportation and then being made to wait to see a doctor, sometimes in standing-room-only situations, when they are unwell, and then being treated dismissively by hospital staff, Abramson allowed readers to feel the material reality of being poor in the US.  Comparing these examples with seniors with adequate supplemental insurance who have the resources to hire car services or have others assist them in arranging care when they need it, jolts the reader to understand and appreciate the difference money makes in the lives and circumstances of us all, and in a way that is different than simply reading a statistic (“80% of the poor do not keep regular doctor’s appointments”) does.  Qualitative research can reach into spaces and places that often go unexamined and then reports back to the rest of us what it is like in those spaces and places.

Example 2: Racing for Innocence (Interviews + Content Analysis + Fictional Stories)

Jennifer Pierce is a Professor of American Studies at the University of Minnesota.  Trained as a sociologist, she has written a number of books about gender, race, and power.  Her very first book, Gender Trials: Emotional Lives in Contemporary Law Firms, published in 1995, is a brilliant look at gender dynamics within two law firms.  Pierce was a participant observer, working as a paralegal, and she observed how female lawyers and female paralegals struggled to obtain parity with their male colleagues.

Fifteen years later, she reexamined the context of the law firm to include an examination of racial dynamics, particularly how elite white men working in these spaces created and maintained a culture that made it difficult for both female attorneys and attorneys of color to thrive. Her book, Racing for Innocence: Whiteness, Gender, and the Backlash Against Affirmative Action , published in 2012, is an interesting and creative blending of interviews with attorneys, content analyses of popular films during this period, and fictional accounts of racial discrimination and sexual harassment.  The law firm she chose to study had come under an affirmative action order and was in the process of implementing equitable policies and programs.  She wanted to understand how recipients of white privilege (the elite white male attorneys) come to deny the role they play in reproducing inequality.  Through interviews with attorneys who were present both before and during the affirmative action order, she creates a historical record of the “bad behavior” that necessitated new policies and procedures, but also, and more importantly , probed the participants ’ understanding of this behavior.  It should come as no surprise that most (but not all) of the white male attorneys saw little need for change, and that almost everyone else had accounts that were different if not sometimes downright harrowing.

I’ve used Pierce’s book in my qualitative research methods courses as an example of an interesting blend of techniques and presentation styles.  My students often have a very difficult time with the fictional accounts she includes.  But they serve an important communicative purpose here.  They are her attempts at presenting “both sides” to an objective reality – something happens (Pierce writes this something so it is very clear what it is), and the two participants to the thing that happened have very different understandings of what this means.  By including these stories, Pierce presents one of her key findings – people remember things differently and these different memories tend to support their own ideological positions.  I wonder what Pierce would have written had she studied the murder of George Floyd or the storming of the US Capitol on January 6 or any number of other historic events whose observers and participants record very different happenings.

This is not to say that qualitative researchers write fictional accounts.  In fact, the use of fiction in our work remains controversial.  When used, it must be clearly identified as a presentation device, as Pierce did.  I include Racing for Innocence here as an example of the multiple uses of methods and techniques and the way that these work together to produce better understandings by us, the readers, of what Pierce studied.  We readers come away with a better grasp of how and why advantaged people understate their own involvement in situations and structures that advantage them.  This is normal human behavior , in other words.  This case may have been about elite white men in law firms, but the general insights here can be transposed to other settings.  Indeed, Pierce argues that more research needs to be done about the role elites play in the reproduction of inequality in the workplace in general.

Example 3: Amplified Advantage (Mixed Methods: Survey Interviews + Focus Groups + Archives)

The final example comes from my own work with college students, particularly the ways in which class background affects the experience of college and outcomes for graduates.  I include it here as an example of mixed methods, and for the use of supplementary archival research.  I’ve done a lot of research over the years on first-generation, low-income, and working-class college students.  I am curious (and skeptical) about the possibility of social mobility today, particularly with the rising cost of college and growing inequality in general.  As one of the few people in my family to go to college, I didn’t grow up with a lot of examples of what college was like or how to make the most of it.  And when I entered graduate school, I realized with dismay that there were very few people like me there.  I worried about becoming too different from my family and friends back home.  And I wasn’t at all sure that I would ever be able to pay back the huge load of debt I was taking on.  And so I wrote my dissertation and first two books about working-class college students.  These books focused on experiences in college and the difficulties of navigating between family and school ( Hurst 2010a, 2012 ).  But even after all that research, I kept coming back to wondering if working-class students who made it through college had an equal chance at finding good jobs and happy lives,

What happens to students after college?  Do working-class students fare as well as their peers?  I knew from my own experience that barriers continued through graduate school and beyond, and that my debtload was higher than that of my peers, constraining some of the choices I made when I graduated.  To answer these questions, I designed a study of students attending small liberal arts colleges, the type of college that tried to equalize the experience of students by requiring all students to live on campus and offering small classes with lots of interaction with faculty.  These private colleges tend to have more money and resources so they can provide financial aid to low-income students.  They also attract some very wealthy students.  Because they enroll students across the class spectrum, I would be able to draw comparisons.  I ended up spending about four years collecting data, both a survey of more than 2000 students (which formed the basis for quantitative analyses) and qualitative data collection (interviews, focus groups, archival research, and participant observation).  This is what we call a “mixed methods” approach because we use both quantitative and qualitative data.  The survey gave me a large enough number of students that I could make comparisons of the how many kind, and to be able to say with some authority that there were in fact significant differences in experience and outcome by class (e.g., wealthier students earned more money and had little debt; working-class students often found jobs that were not in their chosen careers and were very affected by debt, upper-middle-class students were more likely to go to graduate school).  But the survey analyses could not explain why these differences existed.  For that, I needed to talk to people and ask them about their motivations and aspirations.  I needed to understand their perceptions of the world, and it is very hard to do this through a survey.

By interviewing students and recent graduates, I was able to discern particular patterns and pathways through college and beyond.  Specifically, I identified three versions of gameplay.  Upper-middle-class students, whose parents were themselves professionals (academics, lawyers, managers of non-profits), saw college as the first stage of their education and took classes and declared majors that would prepare them for graduate school.  They also spent a lot of time building their resumes, taking advantage of opportunities to help professors with their research, or study abroad.  This helped them gain admission to highly-ranked graduate schools and interesting jobs in the public sector.  In contrast, upper-class students, whose parents were wealthy and more likely to be engaged in business (as CEOs or other high-level directors), prioritized building social capital.  They did this by joining fraternities and sororities and playing club sports.  This helped them when they graduated as they called on friends and parents of friends to find them well-paying jobs.  Finally, low-income, first-generation, and working-class students were often adrift.  They took the classes that were recommended to them but without the knowledge of how to connect them to life beyond college.  They spent time working and studying rather than partying or building their resumes.  All three sets of students thought they were “doing college” the right way, the way that one was supposed to do college.   But these three versions of gameplay led to distinct outcomes that advantaged some students over others.  I titled my work “Amplified Advantage” to highlight this process.

These three examples, Cory Abramson’s The End Game , Jennifer Peirce’s Racing for Innocence, and my own Amplified Advantage, demonstrate the range of approaches and tools available to the qualitative researcher.  They also help explain why qualitative research is so important.  Numbers can tell us some things about the world, but they cannot get at the hearts and minds, motivations and beliefs of the people who make up the social worlds we inhabit.  For that, we need tools that allow us to listen and make sense of what people tell us and show us.  That is what good qualitative research offers us.

How Is This Book Organized?

This textbook is organized as a comprehensive introduction to the use of qualitative research methods.  The first half covers general topics (e.g., approaches to qualitative research, ethics) and research design (necessary steps for building a successful qualitative research study).  The second half reviews various data collection and data analysis techniques.  Of course, building a successful qualitative research study requires some knowledge of data collection and data analysis so the chapters in the first half and the chapters in the second half should be read in conversation with each other.  That said, each chapter can be read on its own for assistance with a particular narrow topic.  In addition to the chapters, a helpful glossary can be found in the back of the book.  Rummage around in the text as needed.

Chapter Descriptions

Chapter 2 provides an overview of the Research Design Process.  How does one begin a study? What is an appropriate research question?  How is the study to be done – with what methods ?  Involving what people and sites?  Although qualitative research studies can and often do change and develop over the course of data collection, it is important to have a good idea of what the aims and goals of your study are at the outset and a good plan of how to achieve those aims and goals.  Chapter 2 provides a road map of the process.

Chapter 3 describes and explains various ways of knowing the (social) world.  What is it possible for us to know about how other people think or why they behave the way they do?  What does it mean to say something is a “fact” or that it is “well-known” and understood?  Qualitative researchers are particularly interested in these questions because of the types of research questions we are interested in answering (the how questions rather than the how many questions of quantitative research).  Qualitative researchers have adopted various epistemological approaches.  Chapter 3 will explore these approaches, highlighting interpretivist approaches that acknowledge the subjective aspect of reality – in other words, reality and knowledge are not objective but rather influenced by (interpreted through) people.

Chapter 4 focuses on the practical matter of developing a research question and finding the right approach to data collection.  In any given study (think of Cory Abramson’s study of aging, for example), there may be years of collected data, thousands of observations , hundreds of pages of notes to read and review and make sense of.  If all you had was a general interest area (“aging”), it would be very difficult, nearly impossible, to make sense of all of that data.  The research question provides a helpful lens to refine and clarify (and simplify) everything you find and collect.  For that reason, it is important to pull out that lens (articulate the research question) before you get started.  In the case of the aging study, Cory Abramson was interested in how inequalities affected understandings and responses to aging.  It is for this reason he designed a study that would allow him to compare different groups of seniors (some middle-class, some poor).  Inevitably, he saw much more in the three years in the field than what made it into his book (or dissertation), but he was able to narrow down the complexity of the social world to provide us with this rich account linked to the original research question.  Developing a good research question is thus crucial to effective design and a successful outcome.  Chapter 4 will provide pointers on how to do this.  Chapter 4 also provides an overview of general approaches taken to doing qualitative research and various “traditions of inquiry.”

Chapter 5 explores sampling .  After you have developed a research question and have a general idea of how you will collect data (Observations?  Interviews?), how do you go about actually finding people and sites to study?  Although there is no “correct number” of people to interview , the sample should follow the research question and research design.  Unlike quantitative research, qualitative research involves nonprobability sampling.  Chapter 5 explains why this is so and what qualities instead make a good sample for qualitative research.

Chapter 6 addresses the importance of reflexivity in qualitative research.  Related to epistemological issues of how we know anything about the social world, qualitative researchers understand that we the researchers can never be truly neutral or outside the study we are conducting.  As observers, we see things that make sense to us and may entirely miss what is either too obvious to note or too different to comprehend.  As interviewers, as much as we would like to ask questions neutrally and remain in the background, interviews are a form of conversation, and the persons we interview are responding to us .  Therefore, it is important to reflect upon our social positions and the knowledges and expectations we bring to our work and to work through any blind spots that we may have.  Chapter 6 provides some examples of reflexivity in practice and exercises for thinking through one’s own biases.

Chapter 7 is a very important chapter and should not be overlooked.  As a practical matter, it should also be read closely with chapters 6 and 8.  Because qualitative researchers deal with people and the social world, it is imperative they develop and adhere to a strong ethical code for conducting research in a way that does not harm.  There are legal requirements and guidelines for doing so (see chapter 8), but these requirements should not be considered synonymous with the ethical code required of us.   Each researcher must constantly interrogate every aspect of their research, from research question to design to sample through analysis and presentation, to ensure that a minimum of harm (ideally, zero harm) is caused.  Because each research project is unique, the standards of care for each study are unique.  Part of being a professional researcher is carrying this code in one’s heart, being constantly attentive to what is required under particular circumstances.  Chapter 7 provides various research scenarios and asks readers to weigh in on the suitability and appropriateness of the research.  If done in a class setting, it will become obvious fairly quickly that there are often no absolutely correct answers, as different people find different aspects of the scenarios of greatest importance.  Minimizing the harm in one area may require possible harm in another.  Being attentive to all the ethical aspects of one’s research and making the best judgments one can, clearly and consciously, is an integral part of being a good researcher.

Chapter 8 , best to be read in conjunction with chapter 7, explains the role and importance of Institutional Review Boards (IRBs) .  Under federal guidelines, an IRB is an appropriately constituted group that has been formally designated to review and monitor research involving human subjects .  Every institution that receives funding from the federal government has an IRB.  IRBs have the authority to approve, require modifications to (to secure approval), or disapprove research.  This group review serves an important role in the protection of the rights and welfare of human research subjects.  Chapter 8 reviews the history of IRBs and the work they do but also argues that IRBs’ review of qualitative research is often both over-inclusive and under-inclusive.  Some aspects of qualitative research are not well understood by IRBs, given that they were developed to prevent abuses in biomedical research.  Thus, it is important not to rely on IRBs to identify all the potential ethical issues that emerge in our research (see chapter 7).

Chapter 9 provides help for getting started on formulating a research question based on gaps in the pre-existing literature.  Research is conducted as part of a community, even if particular studies are done by single individuals (or small teams).  What any of us finds and reports back becomes part of a much larger body of knowledge.  Thus, it is important that we look at the larger body of knowledge before we actually start our bit to see how we can best contribute.  When I first began interviewing working-class college students, there was only one other similar study I could find, and it hadn’t been published (it was a dissertation of students from poor backgrounds).  But there had been a lot published by professors who had grown up working class and made it through college despite the odds.  These accounts by “working-class academics” became an important inspiration for my study and helped me frame the questions I asked the students I interviewed.  Chapter 9 will provide some pointers on how to search for relevant literature and how to use this to refine your research question.

Chapter 10 serves as a bridge between the two parts of the textbook, by introducing techniques of data collection.  Qualitative research is often characterized by the form of data collection – for example, an ethnographic study is one that employs primarily observational data collection for the purpose of documenting and presenting a particular culture or ethnos.  Techniques can be effectively combined, depending on the research question and the aims and goals of the study.   Chapter 10 provides a general overview of all the various techniques and how they can be combined.

The second part of the textbook moves into the doing part of qualitative research once the research question has been articulated and the study designed.  Chapters 11 through 17 cover various data collection techniques and approaches.  Chapters 18 and 19 provide a very simple overview of basic data analysis.  Chapter 20 covers communication of the data to various audiences, and in various formats.

Chapter 11 begins our overview of data collection techniques with a focus on interviewing , the true heart of qualitative research.  This technique can serve as the primary and exclusive form of data collection, or it can be used to supplement other forms (observation, archival).  An interview is distinct from a survey, where questions are asked in a specific order and often with a range of predetermined responses available.  Interviews can be conversational and unstructured or, more conventionally, semistructured , where a general set of interview questions “guides” the conversation.  Chapter 11 covers the basics of interviews: how to create interview guides, how many people to interview, where to conduct the interview, what to watch out for (how to prepare against things going wrong), and how to get the most out of your interviews.

Chapter 12 covers an important variant of interviewing, the focus group.  Focus groups are semistructured interviews with a group of people moderated by a facilitator (the researcher or researcher’s assistant).  Focus groups explicitly use group interaction to assist in the data collection.  They are best used to collect data on a specific topic that is non-personal and shared among the group.  For example, asking a group of college students about a common experience such as taking classes by remote delivery during the pandemic year of 2020.  Chapter 12 covers the basics of focus groups: when to use them, how to create interview guides for them, and how to run them effectively.

Chapter 13 moves away from interviewing to the second major form of data collection unique to qualitative researchers – observation .  Qualitative research that employs observation can best be understood as falling on a continuum of “fly on the wall” observation (e.g., observing how strangers interact in a doctor’s waiting room) to “participant” observation, where the researcher is also an active participant of the activity being observed.  For example, an activist in the Black Lives Matter movement might want to study the movement, using her inside position to gain access to observe key meetings and interactions.  Chapter  13 covers the basics of participant observation studies: advantages and disadvantages, gaining access, ethical concerns related to insider/outsider status and entanglement, and recording techniques.

Chapter 14 takes a closer look at “deep ethnography” – immersion in the field of a particularly long duration for the purpose of gaining a deeper understanding and appreciation of a particular culture or social world.  Clifford Geertz called this “deep hanging out.”  Whereas participant observation is often combined with semistructured interview techniques, deep ethnography’s commitment to “living the life” or experiencing the situation as it really is demands more conversational and natural interactions with people.  These interactions and conversations may take place over months or even years.  As can be expected, there are some costs to this technique, as well as some very large rewards when done competently.  Chapter 14 provides some examples of deep ethnographies that will inspire some beginning researchers and intimidate others.

Chapter 15 moves in the opposite direction of deep ethnography, a technique that is the least positivist of all those discussed here, to mixed methods , a set of techniques that is arguably the most positivist .  A mixed methods approach combines both qualitative data collection and quantitative data collection, commonly by combining a survey that is analyzed statistically (e.g., cross-tabs or regression analyses of large number probability samples) with semi-structured interviews.  Although it is somewhat unconventional to discuss mixed methods in textbooks on qualitative research, I think it is important to recognize this often-employed approach here.  There are several advantages and some disadvantages to taking this route.  Chapter 16 will describe those advantages and disadvantages and provide some particular guidance on how to design a mixed methods study for maximum effectiveness.

Chapter 16 covers data collection that does not involve live human subjects at all – archival and historical research (chapter 17 will also cover data that does not involve interacting with human subjects).  Sometimes people are unavailable to us, either because they do not wish to be interviewed or observed (as is the case with many “elites”) or because they are too far away, in both place and time.  Fortunately, humans leave many traces and we can often answer questions we have by examining those traces.  Special collections and archives can be goldmines for social science research.  This chapter will explain how to access these places, for what purposes, and how to begin to make sense of what you find.

Chapter 17 covers another data collection area that does not involve face-to-face interaction with humans: content analysis .  Although content analysis may be understood more properly as a data analysis technique, the term is often used for the entire approach, which will be the case here.  Content analysis involves interpreting meaning from a body of text.  This body of text might be something found in historical records (see chapter 16) or something collected by the researcher, as in the case of comment posts on a popular blog post.  I once used the stories told by student loan debtors on the website studentloanjustice.org as the content I analyzed.  Content analysis is particularly useful when attempting to define and understand prevalent stories or communication about a topic of interest.  In other words, when we are less interested in what particular people (our defined sample) are doing or believing and more interested in what general narratives exist about a particular topic or issue.  This chapter will explore different approaches to content analysis and provide helpful tips on how to collect data, how to turn that data into codes for analysis, and how to go about presenting what is found through analysis.

Where chapter 17 has pushed us towards data analysis, chapters 18 and 19 are all about what to do with the data collected, whether that data be in the form of interview transcripts or fieldnotes from observations.  Chapter 18 introduces the basics of coding , the iterative process of assigning meaning to the data in order to both simplify and identify patterns.  What is a code and how does it work?  What are the different ways of coding data, and when should you use them?  What is a codebook, and why do you need one?  What does the process of data analysis look like?

Chapter 19 goes further into detail on codes and how to use them, particularly the later stages of coding in which our codes are refined, simplified, combined, and organized.  These later rounds of coding are essential to getting the most out of the data we’ve collected.  As students are often overwhelmed with the amount of data (a corpus of interview transcripts typically runs into the hundreds of pages; fieldnotes can easily top that), this chapter will also address time management and provide suggestions for dealing with chaos and reminders that feeling overwhelmed at the analysis stage is part of the process.  By the end of the chapter, you should understand how “findings” are actually found.

The book concludes with a chapter dedicated to the effective presentation of data results.  Chapter 20 covers the many ways that researchers communicate their studies to various audiences (academic, personal, political), what elements must be included in these various publications, and the hallmarks of excellent qualitative research that various audiences will be expecting.  Because qualitative researchers are motivated by understanding and conveying meaning , effective communication is not only an essential skill but a fundamental facet of the entire research project.  Ethnographers must be able to convey a certain sense of verisimilitude , the appearance of true reality.  Those employing interviews must faithfully depict the key meanings of the people they interviewed in a way that rings true to those people, even if the end result surprises them.  And all researchers must strive for clarity in their publications so that various audiences can understand what was found and why it is important.

The book concludes with a short chapter ( chapter 21 ) discussing the value of qualitative research. At the very end of this book, you will find a glossary of terms. I recommend you make frequent use of the glossary and add to each entry as you find examples. Although the entries are meant to be simple and clear, you may also want to paraphrase the definition—make it “make sense” to you, in other words. In addition to the standard reference list (all works cited here), you will find various recommendations for further reading at the end of many chapters. Some of these recommendations will be examples of excellent qualitative research, indicated with an asterisk (*) at the end of the entry. As they say, a picture is worth a thousand words. A good example of qualitative research can teach you more about conducting research than any textbook can (this one included). I highly recommend you select one to three examples from these lists and read them along with the textbook.

A final note on the choice of examples – you will note that many of the examples used in the text come from research on college students.  This is for two reasons.  First, as most of my research falls in this area, I am most familiar with this literature and have contacts with those who do research here and can call upon them to share their stories with you.  Second, and more importantly, my hope is that this textbook reaches a wide audience of beginning researchers who study widely and deeply across the range of what can be known about the social world (from marine resources management to public policy to nursing to political science to sexuality studies and beyond).  It is sometimes difficult to find examples that speak to all those research interests, however. A focus on college students is something that all readers can understand and, hopefully, appreciate, as we are all now or have been at some point a college student.

Recommended Reading: Other Qualitative Research Textbooks

I’ve included a brief list of some of my favorite qualitative research textbooks and guidebooks if you need more than what you will find in this introductory text.  For each, I’ve also indicated if these are for “beginning” or “advanced” (graduate-level) readers.  Many of these books have several editions that do not significantly vary; the edition recommended is merely the edition I have used in teaching and to whose page numbers any specific references made in the text agree.

Barbour, Rosaline. 2014. Introducing Qualitative Research: A Student’s Guide. Thousand Oaks, CA: SAGE.  A good introduction to qualitative research, with abundant examples (often from the discipline of health care) and clear definitions.  Includes quick summaries at the ends of each chapter.  However, some US students might find the British context distracting and can be a bit advanced in some places.  Beginning .

Bloomberg, Linda Dale, and Marie F. Volpe. 2012. Completing Your Qualitative Dissertation . 2nd ed. Thousand Oaks, CA: SAGE.  Specifically designed to guide graduate students through the research process. Advanced .

Creswell, John W., and Cheryl Poth. 2018 Qualitative Inquiry and Research Design: Choosing among Five Traditions .  4th ed. Thousand Oaks, CA: SAGE.  This is a classic and one of the go-to books I used myself as a graduate student.  One of the best things about this text is its clear presentation of five distinct traditions in qualitative research.  Despite the title, this reasonably sized book is about more than research design, including both data analysis and how to write about qualitative research.  Advanced .

Lareau, Annette. 2021. Listening to People: A Practical Guide to Interviewing, Participant Observation, Data Analysis, and Writing It All Up .  Chicago: University of Chicago Press. A readable and personal account of conducting qualitative research by an eminent sociologist, with a heavy emphasis on the kinds of participant-observation research conducted by the author.  Despite its reader-friendliness, this is really a book targeted to graduate students learning the craft.  Advanced .

Lune, Howard, and Bruce L. Berg. 2018. 9th edition.  Qualitative Research Methods for the Social Sciences.  Pearson . Although a good introduction to qualitative methods, the authors favor symbolic interactionist and dramaturgical approaches, which limits the appeal primarily to sociologists.  Beginning .

Marshall, Catherine, and Gretchen B. Rossman. 2016. 6th edition. Designing Qualitative Research. Thousand Oaks, CA: SAGE.  Very readable and accessible guide to research design by two educational scholars.  Although the presentation is sometimes fairly dry, personal vignettes and illustrations enliven the text.  Beginning .

Maxwell, Joseph A. 2013. Qualitative Research Design: An Interactive Approach .  3rd ed. Thousand Oaks, CA: SAGE. A short and accessible introduction to qualitative research design, particularly helpful for graduate students contemplating theses and dissertations. This has been a standard textbook in my graduate-level courses for years.  Advanced .

Patton, Michael Quinn. 2002. Qualitative Research and Evaluation Methods . Thousand Oaks, CA: SAGE.  This is a comprehensive text that served as my “go-to” reference when I was a graduate student.  It is particularly helpful for those involved in program evaluation and other forms of evaluation studies and uses examples from a wide range of disciplines.  Advanced .

Rubin, Ashley T. 2021. Rocking Qualitative Social Science: An Irreverent Guide to Rigorous Research. Stanford : Stanford University Press.  A delightful and personal read.  Rubin uses rock climbing as an extended metaphor for learning how to conduct qualitative research.  A bit slanted toward ethnographic and archival methods of data collection, with frequent examples from her own studies in criminology. Beginning .

Weis, Lois, and Michelle Fine. 2000. Speed Bumps: A Student-Friendly Guide to Qualitative Research . New York: Teachers College Press.  Readable and accessibly written in a quasi-conversational style.  Particularly strong in its discussion of ethical issues throughout the qualitative research process.  Not comprehensive, however, and very much tied to ethnographic research.  Although designed for graduate students, this is a recommended read for students of all levels.  Beginning .

Patton’s Ten Suggestions for Doing Qualitative Research

The following ten suggestions were made by Michael Quinn Patton in his massive textbooks Qualitative Research and Evaluations Methods . This book is highly recommended for those of you who want more than an introduction to qualitative methods. It is the book I relied on heavily when I was a graduate student, although it is much easier to “dip into” when necessary than to read through as a whole. Patton is asked for “just one bit of advice” for a graduate student considering using qualitative research methods for their dissertation.  Here are his top ten responses, in short form, heavily paraphrased, and with additional comments and emphases from me:

• Make sure that a qualitative approach fits the research question. The following are the kinds of questions that call out for qualitative methods or where qualitative methods are particularly appropriate: questions about people’s experiences or how they make sense of those experiences; studying a person in their natural environment; researching a phenomenon so unknown that it would be impossible to study it with standardized instruments or other forms of quantitative data collection.
• Study qualitative research by going to the original sources for the design and analysis appropriate to the particular approach you want to take (e.g., read Glaser and Straus if you are using grounded theory )
• Find a dissertation adviser who understands or at least who will support your use of qualitative research methods. You are asking for trouble if your entire committee is populated by quantitative researchers, even if they are all very knowledgeable about the subject or focus of your study (maybe even more so if they are!)
• Really work on design. Doing qualitative research effectively takes a lot of planning.  Even if things are more flexible than in quantitative research, a good design is absolutely essential when starting out.
• Practice data collection techniques, particularly interviewing and observing. There is definitely a set of learned skills here!  Do not expect your first interview to be perfect.  You will continue to grow as a researcher the more interviews you conduct, and you will probably come to understand yourself a bit more in the process, too.  This is not easy, despite what others who don’t work with qualitative methods may assume (and tell you!)
• Have a plan for analysis before you begin data collection. This is often a requirement in IRB protocols , although you can get away with writing something fairly simple.  And even if you are taking an approach, such as grounded theory, that pushes you to remain fairly open-minded during the data collection process, you still want to know what you will be doing with all the data collected – creating a codebook? Writing analytical memos? Comparing cases?  Having a plan in hand will also help prevent you from collecting too much extraneous data.
• Be prepared to confront controversies both within the qualitative research community and between qualitative research and quantitative research. Don’t be naïve about this – qualitative research, particularly some approaches, will be derided by many more “positivist” researchers and audiences.  For example, is an “n” of 1 really sufficient?  Yes!  But not everyone will agree.
• Do not make the mistake of using qualitative research methods because someone told you it was easier, or because you are intimidated by the math required of statistical analyses. Qualitative research is difficult in its own way (and many would claim much more time-consuming than quantitative research).  Do it because you are convinced it is right for your goals, aims, and research questions.
• Find a good support network. This could be a research mentor, or it could be a group of friends or colleagues who are also using qualitative research, or it could be just someone who will listen to you work through all of the issues you will confront out in the field and during the writing process.  Even though qualitative research often involves human subjects, it can be pretty lonely.  A lot of times you will feel like you are working without a net.  You have to create one for yourself.  Take care of yourself.
• And, finally, in the words of Patton, “Prepare to be changed. Looking deeply at other people’s lives will force you to look deeply at yourself.”
• We will actually spend an entire chapter ( chapter 3 ) looking at this question in much more detail! ↵
• Note that this might have been news to Europeans at the time, but many other societies around the world had also come to this conclusion through observation.  There is often a tendency to equate “the scientific revolution” with the European world in which it took place, but this is somewhat misleading. ↵
• Historians are a special case here.  Historians have scrupulously and rigorously investigated the social world, but not for the purpose of understanding general laws about how things work, which is the point of scientific empirical research.  History is often referred to as an idiographic field of study, meaning that it studies things that happened or are happening in themselves and not for general observations or conclusions. ↵
• Don’t worry, we’ll spend more time later in this book unpacking the meaning of ethnography and other terms that are important here.  Note the available glossary ↵

An approach to research that is “multimethod in focus, involving an interpretative, naturalistic approach to its subject matter.  This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them.  Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives." ( Denzin and Lincoln 2005:2 ). Contrast with quantitative research .

In contrast to methodology, methods are more simply the practices and tools used to collect and analyze data.  Examples of common methods in qualitative research are interviews , observations , and documentary analysis .  One’s methodology should connect to one’s choice of methods, of course, but they are distinguishable terms.  See also methodology .

A proposed explanation for an observation, phenomenon, or scientific problem that can be tested by further investigation.  The positing of a hypothesis is often the first step in quantitative research but not in qualitative research.  Even when qualitative researchers offer possible explanations in advance of conducting research, they will tend to not use the word “hypothesis” as it conjures up the kind of positivist research they are not conducting.

The foundational question to be addressed by the research study.  This will form the anchor of the research design, collection, and analysis.  Note that in qualitative research, the research question may, and probably will, alter or develop during the course of the research.

An approach to research that collects and analyzes numerical data for the purpose of finding patterns and averages, making predictions, testing causal relationships, and generalizing results to wider populations.  Contrast with qualitative research .

Data collection that takes place in real-world settings, referred to as “the field;” a key component of much Grounded Theory and ethnographic research.  Patton ( 2002 ) calls fieldwork “the central activity of qualitative inquiry” where “‘going into the field’ means having direct and personal contact with people under study in their own environments – getting close to people and situations being studied to personally understand the realities of minutiae of daily life” (48).

The people who are the subjects of a qualitative study.  In interview-based studies, they may be the respondents to the interviewer; for purposes of IRBs, they are often referred to as the human subjects of the research.

The branch of philosophy concerned with knowledge.  For researchers, it is important to recognize and adopt one of the many distinguishing epistemological perspectives as part of our understanding of what questions research can address or fully answer.  See, e.g., constructivism , subjectivism, and  objectivism .

An approach that refutes the possibility of neutrality in social science research.  All research is “guided by a set of beliefs and feelings about the world and how it should be understood and studied” (Denzin and Lincoln 2005: 13).  In contrast to positivism , interpretivism recognizes the social constructedness of reality, and researchers adopting this approach focus on capturing interpretations and understandings people have about the world rather than “the world” as it is (which is a chimera).

The cluster of data-collection tools and techniques that involve observing interactions between people, the behaviors, and practices of individuals (sometimes in contrast to what they say about how they act and behave), and cultures in context.  Observational methods are the key tools employed by ethnographers and Grounded Theory .

Research based on data collected and analyzed by the research (in contrast to secondary “library” research).

The process of selecting people or other units of analysis to represent a larger population. In quantitative research, this representation is taken quite literally, as statistically representative.  In qualitative research, in contrast, sample selection is often made based on potential to generate insight about a particular topic or phenomenon.

A method of data collection in which the researcher asks the participant questions; the answers to these questions are often recorded and transcribed verbatim. There are many different kinds of interviews - see also semistructured interview , structured interview , and unstructured interview .

The specific group of individuals that you will collect data from.  Contrast population.

The practice of being conscious of and reflective upon one’s own social location and presence when conducting research.  Because qualitative research often requires interaction with live humans, failing to take into account how one’s presence and prior expectations and social location affect the data collected and how analyzed may limit the reliability of the findings.  This remains true even when dealing with historical archives and other content.  Who we are matters when asking questions about how people experience the world because we, too, are a part of that world.

The science and practice of right conduct; in research, it is also the delineation of moral obligations towards research participants, communities to which we belong, and communities in which we conduct our research.

An administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated. The IRB is charged with the responsibility of reviewing all research involving human participants. The IRB is concerned with protecting the welfare, rights, and privacy of human subjects. The IRB has the authority to approve, disapprove, monitor, and require modifications in all research activities that fall within its jurisdiction as specified by both the federal regulations and institutional policy.

Research, according to US federal guidelines, that involves “a living individual about whom an investigator (whether professional or student) conducting research:  (1) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or  (2) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens.”

One of the primary methodological traditions of inquiry in qualitative research, ethnography is the study of a group or group culture, largely through observational fieldwork supplemented by interviews. It is a form of fieldwork that may include participant-observation data collection. See chapter 14 for a discussion of deep ethnography. 

A form of interview that follows a standard guide of questions asked, although the order of the questions may change to match the particular needs of each individual interview subject, and probing “follow-up” questions are often added during the course of the interview.  The semi-structured interview is the primary form of interviewing used by qualitative researchers in the social sciences.  It is sometimes referred to as an “in-depth” interview.  See also interview and  interview guide .

A method of observational data collection taking place in a natural setting; a form of fieldwork .  The term encompasses a continuum of relative participation by the researcher (from full participant to “fly-on-the-wall” observer).  This is also sometimes referred to as ethnography , although the latter is characterized by a greater focus on the culture under observation.

A research design that employs both quantitative and qualitative methods, as in the case of a survey supplemented by interviews.

An epistemological perspective that posits the existence of reality through sensory experience similar to empiricism but goes further in denying any non-sensory basis of thought or consciousness.  In the social sciences, the term has roots in the proto-sociologist August Comte, who believed he could discern “laws” of society similar to the laws of natural science (e.g., gravity).  The term has come to mean the kinds of measurable and verifiable science conducted by quantitative researchers and is thus used pejoratively by some qualitative researchers interested in interpretation, consciousness, and human understanding.  Calling someone a “positivist” is often intended as an insult.  See also empiricism and objectivism.

A place or collection containing records, documents, or other materials of historical interest; most universities have an archive of material related to the university’s history, as well as other “special collections” that may be of interest to members of the community.

A method of both data collection and data analysis in which a given content (textual, visual, graphic) is examined systematically and rigorously to identify meanings, themes, patterns and assumptions.  Qualitative content analysis (QCA) is concerned with gathering and interpreting an existing body of material.    

A word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data (Saldaña 2021:5).

Usually a verbatim written record of an interview or focus group discussion.

The primary form of data for fieldwork , participant observation , and ethnography .  These notes, taken by the researcher either during the course of fieldwork or at day’s end, should include as many details as possible on what was observed and what was said.  They should include clear identifiers of date, time, setting, and names (or identifying characteristics) of participants.

The process of labeling and organizing qualitative data to identify different themes and the relationships between them; a way of simplifying data to allow better management and retrieval of key themes and illustrative passages.  See coding frame and  codebook.

A methodological tradition of inquiry and approach to analyzing qualitative data in which theories emerge from a rigorous and systematic process of induction.  This approach was pioneered by the sociologists Glaser and Strauss (1967).  The elements of theory generated from comparative analysis of data are, first, conceptual categories and their properties and, second, hypotheses or generalized relations among the categories and their properties – “The constant comparing of many groups draws the [researcher’s] attention to their many similarities and differences.  Considering these leads [the researcher] to generate abstract categories and their properties, which, since they emerge from the data, will clearly be important to a theory explaining the kind of behavior under observation.” (36).

A detailed description of any proposed research that involves human subjects for review by IRB.  The protocol serves as the recipe for the conduct of the research activity.  It includes the scientific rationale to justify the conduct of the study, the information necessary to conduct the study, the plan for managing and analyzing the data, and a discussion of the research ethical issues relevant to the research.  Protocols for qualitative research often include interview guides, all documents related to recruitment, informed consent forms, very clear guidelines on the safekeeping of materials collected, and plans for de-identifying transcripts or other data that include personal identifying information.

Introduction to Qualitative Research Methods Copyright © 2023 by Allison Hurst is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License , except where otherwise noted.

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How to Write the Background of the Study in Research (Part 1)

Background of the Study in Research: Definition and the Core Elements it Contains

Before we embark on a detailed discussion on how to write the background of the study of your proposed research or thesis, it is important to first discuss its meaning and the core elements that it should contain. This is obviously because understanding the nature of the background of the study in research and knowing exactly what to include in it allow us to have both greater control and clear direction of the writing process.

So, what really is the background of the study and what are the core elements that it should contain?

The background of the study, which usually forms the first section of the introduction to a research paper or thesis, provides the overview of the study. In other words, it is that section of the research paper or thesis that establishes the context of the study. Its main function is to explain why the proposed research is important and essential to understanding the main aspects of the study.

The background of the study, therefore, is the section of the research paper or thesis that identifies the problem or gap of the study that needs to addressed and justifies the need for conducting the study. It also articulates the main goal of the study and the thesis statement, that is, the main claim or argument of the paper.

Given this brief understanding of the background of the study, we can anticipate what readers or thesis committee members expect from it. As we can see, the background of the study should contain the following major points:

1) brief discussion on what is known about the topic under investigation; 2) An articulation of the research gap or problem that needs to be addressed; 3) What the researcher would like to do or aim to achieve in the study ( research goal); 4) The thesis statement, that is, the main argument or contention of the paper (which also serves as the reason why the researcher would want to pursue the study); 5) The major significance or contribution of the study to a particular discipline; and 6) Depending on the nature of the study, an articulation of the hypothesis of the study.

Thus, when writing the background of the study, you should plan and structure it based on the major points just mentioned. With this, you will have a clear picture of the flow of the tasks that need to be completed in writing this section of your research or thesis proposal.

Now, how do you go about writing the background of the study in your proposed research or thesis?

The next lessons will address this question.

How to Write the Opening Paragraphs of the Background of the Study?

To begin with, let us assume that you already have conducted a preliminary research on your chosen topic, that is, you already have read a lot of literature and gathered relevant information for writing the background of your study. Let us also assume that you already have identified the gap of your proposed research and have already developed the research questions and thesis statement. If you have not yet identified the gap in your proposed research, you might as well go back to our lesson on how to identify a research gap.

So, we will just put together everything that you have researched into a background of the study (assuming, again, that you already have the necessary information). But in this lesson, let’s just focus on writing the opening paragraphs.

It is important to note at this point that there are different styles of writing the background of the study. Hence, what I will be sharing with you here is not just “the” only way of writing the background of the study. As a matter of fact, there is no “one-size-fits-all” style of writing this part of the research or thesis. At the end of the day, you are free to develop your own. However, whatever style it would be, it always starts with a plan which structures the writing process into stages or steps. The steps that I will share with below are just some of the most effective ways of writing the background of the study in research.

So, let’s begin.

It is always a good idea to begin the background of your study by giving an overview of your research topic. This may include providing a definition of the key concepts of your research or highlighting the main developments of the research topic.

Let us suppose that the topic of your study is the “lived experiences of students with mathematical anxiety”.

Here, you may start the background of your study with a discussion on the meaning, nature, and dynamics of the term “mathematical anxiety”. The reason for this is too obvious: “mathematical anxiety” is a highly technical term that is specific to mathematics. Hence, this term is not readily understandable to non-specialists in this field.

So, you may write the opening paragraph of your background of the study with this:

“Mathematical anxiety refers to the individual’s unpleasant emotional mood responses when confronted with a mathematical situation.”

Since you do not invent the definition of the term “mathematical anxiety”, then you need to provide a citation to the source of the material from which you are quoting. For example, you may now say:

“Mathematical anxiety refers to the individual’s unpleasant emotional mood responses when confronted with a mathematical situation (Eliot, 2020).”

And then you may proceed with the discussion on the nature and dynamics of the term “mathematical anxiety”. You may say:

“Lou (2019) specifically identifies some of the manifestations of this type of anxiety, which include, but not limited to, depression, helplessness, nervousness and fearfulness in doing mathematical and numerical tasks.”

After explaining to your readers the meaning, nature, and dynamics (as well as some historical development if you wish to) of the term “mathematical anxiety”, you may now proceed to showing the problem or gap of the study. As you may already know, the research gap is the problem that needs to be addressed in the study. This is important because no research activity is possible without the research gap.

Let us suppose that your research problem or gap is: “Mathematical anxiety can negatively affect not just the academic achievement of the students but also their future career plans and total well-being. Also, there are no known studies that deal with the mathematical anxiety of junior high school students in New Zealand.” With this, you may say:

“If left unchecked, as Shapiro (2019) claims, this problem will expand and create a total avoidance pattern on the part of the students, which can be expressed most visibly in the form of cutting classes and habitual absenteeism. As we can see, this will negatively affect the performance of students in mathematics. In fact, the study conducted by Luttenberger and Wimmer (2018) revealed that the outcomes of mathematical anxiety do not only negatively affect the students’ performance in math-related situations but also their future career as professionals. Without a doubt, therefore, mathematical anxiety is a recurring problem for many individuals which will negatively affect the academic success and future career of the student.”

Now that you already have both explained the meaning, nature, and dynamics of the term “mathematical anxiety” and articulated the gap of your proposed research, you may now state the main goal of your study. You may say:

“Hence, it is precisely in this context that the researcher aims to determine the lived experiences of those students with mathematical anxiety. In particular, this proposed thesis aims to determine the lived experiences of the junior high school students in New Zealand and identify the factors that caused them to become disinterested in mathematics.”

Please note that you should not end the first paragraph of your background of the study with the articulation of the research goal. You also need to articulate the “thesis statement”, which usually comes after the research goal. As is well known, the thesis statement is the statement of your argument or contention in the study. It is more of a personal argument or claim of the researcher, which specifically highlights the possible contribution of the study. For example, you may say:

“The researcher argues that there is a need to determine the lived experiences of these students with mathematical anxiety because knowing and understanding the difficulties and challenges that they have encountered will put the researcher in the best position to offer some alternatives to the problem. Indeed, it is only when we have performed some kind of a ‘diagnosis’ that we can offer practicable solutions to the problem. And in the case of the junior high school students in New Zealand who are having mathematical anxiety, determining their lived experiences as well as identifying the factors that caused them to become disinterested in mathematics are the very first steps in addressing the problem.”

If we combine the bits and pieces that we have written above, we can now come up with the opening paragraphs of your background of the study, which reads:

As we can see, we can find in the first paragraph 5 essential elements that must be articulated in the background of the study, namely:

1) A brief discussion on what is known about the topic under investigation; 2) An articulation of the research gap or problem that needs to be addressed; 3) What the researcher would like to do or aim to achieve in the study (research goal); 4) The thesis statement , that is, the main argument or claim of the paper; and 5) The major significance or contribution of the study to a particular discipline. So, that’s how you write the opening paragraphs of your background of the study. The next lesson will talk about writing the body of the background of the study.

How to Write the Body of the Background of the Study?

If we liken the background of the study to a sitting cat, then the opening paragraphs that we have completed in the previous lesson would just represent the head of the cat.

This means we still have to write the body (body of the cat) and the conclusion (tail). But how do we write the body of the background of the study? What should be its content?

Truly, this is one of the most difficult challenges that fledgling scholars faced. Because they are inexperienced researchers and didn’t know what to do next, they just wrote whatever they wished to write. Fortunately, this is relatively easy if they know the technique.

One of the best ways to write the body of the background of the study is to attack it from the vantage point of the research gap. If you recall, when we articulated the research gap in the opening paragraphs, we made a bold claim there, that is, there are junior high school students in New Zealand who are experiencing mathematical anxiety. Now, you have to remember that a “statement” remains an assumption until you can provide concrete proofs to it. This is what we call the “epistemological” aspect of research. As we may already know, epistemology is a specific branch of philosophy that deals with the validity of knowledge. And to validate knowledge is to provide concrete proofs to our statements. Hence, the reason why we need to provide proofs to our claim that there are indeed junior high school students in New Zealand who are experiencing mathematical anxiety is the obvious fact that if there are none, then we cannot proceed with our study. We have no one to interview with in the first. In short, we don’t have respondents.

The body of the background of the study, therefore, should be a presentation and articulation of the proofs to our claim that indeed there are junior high school students in New Zealand who are experiencing mathematical anxiety. Please note, however, that this idea is true only if you follow the style of writing the background of the study that I introduced in this course.

So, how do we do this?

One of the best ways to do this is to look for literature on mathematical anxiety among junior high school students in New Zealand and cite them here. However, if there are not enough literature on this topic in New Zealand, then we need to conduct initial interviews with these students or make actual classroom observations and record instances of mathematical anxiety among these students. But it is always a good idea if we combine literature review with interviews and actual observations.

Assuming you already have the data, then you may now proceed with the writing of the body of your background of the study. For example, you may say:

“According to records and based on the researcher’s firsthand experience with students in some junior high schools in New Zealand, indeed, there are students who lost interest in mathematics. For one, while checking the daily attendance and monitoring of the students, it was observed that some of them are not always attending classes in mathematics but are regularly attending the rest of the required subjects.”

After this sentence, you may insert some literature that will support this position. For example, you may say:

“As a matter of fact, this phenomenon is also observed in the work of Estonanto. In his study titled ‘Impact of Math Anxiety on Academic Performance in Pre-Calculus of Senior High School’, Estonanto (2019) found out that, inter alia, students with mathematical anxiety have the tendency to intentionally prioritize other subjects and commit habitual tardiness and absences.”

Then you may proceed saying:

“With this initial knowledge in mind, the researcher conducted initial interviews with some of these students. The researcher learned that one student did not regularly attend his math subject because he believed that he is not good in math and no matter how he listens to the topic he will not learn.”

Then you may say:

“Another student also mentioned that she was influenced by her friends’ perception that mathematics is hard; hence, she avoids the subject. Indeed, these are concrete proofs that there are some junior high school students in New Zealand who have mathematical anxiety. As already hinted, “disinterest” or the loss of interest in mathematics is one of the manifestations of a mathematical anxiety.”

If we combine what we have just written above, then we can have the first two paragraphs of the body of our background of the study. It reads:

“According to records and based on the researcher’s firsthand experience with students in some junior high schools in New Zealand, indeed there are students who lost interest in mathematics. For one, while checking the daily attendance and monitoring of the students, it was observed that some of them are not always attending classes in mathematics but are regularly attending the rest of the required subjects. As a matter of fact, this phenomenon is also observed in the work of Estonanto. In his study titled ‘Impact of Math Anxiety on Academic Performance in Pre-Calculus of Senior High School’, Estonanto (2019) found out that, inter alia, students with mathematical anxiety have the tendency to intentionally prioritize other subjects and commit habitual tardiness and absences.

With this initial knowledge in mind, the researcher conducted initial interviews with some of these students. The researcher learned that one student did not regularly attend his math subject because he believed that he is not good in math and no matter how he listens to the topic he will not learn. Another student also mentioned that she was influenced by her friends’ perception that mathematics is hard; hence, she avoids the subject. Indeed, these are concrete proofs that there are some junior high school students in New Zealand who have mathematical anxiety. As already hinted, “disinterest” or the loss of interest in mathematics is one of the manifestations of a mathematical anxiety.”

And then you need validate this observation by conducting another round of interview and observation in other schools. So, you may continue writing the body of the background of the study with this:

“To validate the information gathered from the initial interviews and observations, the researcher conducted another round of interview and observation with other junior high school students in New Zealand.”

“On the one hand, the researcher found out that during mathematics time some students felt uneasy; in fact, they showed a feeling of being tensed or anxious while working with numbers and mathematical problems. Some were even afraid to seat in front, while some students at the back were secretly playing with their mobile phones. These students also show remarkable apprehension during board works like trembling hands, nervous laughter, and the like.”

Then provide some literature that will support your position. You may say:

“As Finlayson (2017) corroborates, emotional symptoms of mathematical anxiety involve feeling of helplessness, lack of confidence, and being nervous for being put on the spot. It must be noted that these occasionally extreme emotional reactions are not triggered by provocative procedures. As a matter of fact, there are no personally sensitive questions or intentional manipulations of stress. The teacher simply asked a very simple question, like identifying the parts of a circle. Certainly, this observation also conforms with the study of Ashcraft (2016) when he mentions that students with mathematical anxiety show a negative attitude towards math and hold self-perceptions about their mathematical abilities.”

And then you proceed:

“On the other hand, when the class had their other subjects, the students show a feeling of excitement. They even hurried to seat in front and attentively participating in the class discussion without hesitation and without the feeling of being tensed or anxious. For sure, this is another concrete proof that there are junior high school students in New Zealand who have mathematical anxiety.”

To further prove the point that there indeed junior high school students in New Zealand who have mathematical anxiety, you may solicit observations from other math teachers. For instance, you may say:

“The researcher further verified if the problem is also happening in other sections and whether other mathematics teachers experienced the same observation that the researcher had. This validation or verification is important in establishing credibility of the claim (Buchbinder, 2016) and ensuring reliability and validity of the assertion (Morse et al., 2002). In this regard, the researcher attempted to open up the issue of math anxiety during the Departmentalized Learning Action Cell (LAC), a group discussion of educators per quarter, with the objective of ‘Teaching Strategies to Develop Critical Thinking of the Students’. During the session, one teacher corroborates the researcher’s observation that there are indeed junior high school students in New Zealand who have mathematical anxiety. The teacher pointed out that truly there were students who showed no extra effort in mathematics class in addition to the fact that some students really avoided the subject. In addition, another math teacher expressed her frustrations about these students who have mathematical anxiety. She quipped: “How can a teacher develop the critical thinking skills or ability of the students if in the first place these students show avoidance and disinterest in the subject?’.”

Again, if we combine what we have just written above, then we can now have the remaining parts of the body of the background of the study. It reads:

So, that’s how we write the body of the background of the study in research . Of course, you may add any relevant points which you think might amplify your content. What is important at this point is that you now have a clear idea of how to write the body of the background of the study.

How to Write the Concluding Part of the Background of the Study?

Since we have already completed the body of our background of the study in the previous lesson, we may now write the concluding paragraph (the tail of the cat). This is important because one of the rules of thumb in writing is that we always put a close to what we have started.

It is important to note that the conclusion of the background of the study is just a rehashing of the research gap and main goal of the study stated in the introductory paragraph, but framed differently. The purpose of this is just to emphasize, after presenting the justifications, what the study aims to attain and why it wants to do it. The conclusion, therefore, will look just like this:

“Given the above discussion, it is evident that there are indeed junior high school students in New Zealand who are experiencing mathematical anxiety. And as we can see, mathematical anxiety can negatively affect not just the academic achievement of the students but also their future career plans and total well-being. Again, it is for this reason that the researcher attempts to determine the lived experiences of those junior high school students in New Zealand who are experiencing a mathematical anxiety.”

If we combine all that we have written from the very beginning, the entire background of the study would now read:

If we analyze the background of the study that we have just completed, we can observe that in addition to the important elements that it should contain, it has also addressed other important elements that readers or thesis committee members expect from it.

On the one hand, it provides the researcher with a clear direction in the conduct of the study. As we can see, the background of the study that we have just completed enables us to move in the right direction with a strong focus as it has set clear goals and the reasons why we want to do it. Indeed, we now exactly know what to do next and how to write the rest of the research paper or thesis.

On the other hand, most researchers start their research with scattered ideas and usually get stuck with how to proceed further. But with a well-written background of the study, just as the one above, we have decluttered and organized our thoughts. We have also become aware of what have and have not been done in our area of study, as well as what we can significantly contribute in the already existing body of knowledge in this area of study.

Please note, however, as I already mentioned previously, that the model that I have just presented is only one of the many models available in textbooks and other sources. You are, of course, free to choose your own style of writing the background of the study. You may also consult your thesis supervisor for some guidance on how to attack the writing of your background of the study.

Lastly, and as you may already know, universities around the world have their own thesis formats. Hence, you should follow your university’s rules on the format and style in writing your research or thesis. What is important is that with the lessons that you learned in this course, you can now easily write the introductory part of your thesis, such as the background of the study.

Nursing Research pp 1–17 Cite as

The purpose of qualitative research

• Janice M. Morse 3 &
• Peggy Anne Field 4  

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Research fills a vital and important role in society: it is the means by which discoveries are made, ideas are confirmed or refuted, events controlled or predicted and theory developed or refined. All of these functions contribute to the development of knowledge. However, no single research approach fulfills all of these functions, and the contribution of qualitative research is both vital and unique to the goals of research in general. Qualitative research enables us to make sense of reality, to describe and explain the social world and to develop explanatory models and theories. It is the primary means by which the theoretical foundations of social sciences may be constructed or re-examined.

Research is to see what everybody has seen and to think what nobody has thought. (Albert Szent-Gyorgy)

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Further Reading

Atkinson, P. (1994) Some perils of paradigms. Qualitative Health Research , 5 (1).

Denzin, N.K. and Lincoln, Y.S. (eds) (1994) Part II: Major paradigms and perspectives, in Handbook of Qualitative Research , Sage, Thousand Oaks, CA, pp. 99–198.

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Gilbert, N. (ed.) (1993) Researching Social Life , Sage, London.

Glassner, B. and Moreno, J.D. (eds) (1989) The Qualitative-Quantitative Distinction in the Social Sciences , Kluwer, Dordrecht, The Netherlands.

Hammersley, M. (ed) (1993) Social Research: Philosophy, Politics and Practice , Sage, London.

Morse, J.M. (ed.) (1992) Part I: The characteristics of qualitative research, in Qualitative Health Research , Sage, Newbury Park, CA, pp. 69–90.

Morse, J.M., Bottorff, J.L., Neander, W. et al. (1991/1992) Comparative analysis of conceptualizations and theories of caring, in Qualitative Health Research , (ed. J.M. Morse), Sage, Newbury Park, CA, pp. 69–90.

Noblit, G.W. and Engel, J.D. (1991/1992) The holistic injunction: an ideal and a moral imperative for qualitative research, in Qualitative Health Research , (ed. J.M. Morse), Sage, Newbury Park, CA, pp. 43–63.

Rabinow, P. and Sullivan, W.M. (eds) (1979) Interpretive Social Science: A Reader , University of California Press, Berkeley, CA.

Smith, R.B. and Manning, P.K. (eds) (1982) A Handbook of Social Science Methods , Ballinger, Cambridge, MA.

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Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervene or introduce treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and application of qualitative research.

Qualitative research at its core, ask open-ended questions whose answers are not easily put into numbers such as ‘how’ and ‘why’. Due to the open-ended nature of the research questions at hand, qualitative research design is often not linear in the same way quantitative design is. One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. Phenomena such as experiences, attitudes, and behaviors can be difficult to accurately capture quantitatively, whereas a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a certain time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify and it is important to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore ‘compete’ against each other and the philosophical paradigms associated with each, qualitative and quantitative work are not necessarily opposites nor are they incompatible. While qualitative and quantitative approaches are different, they are not necessarily opposites, and they are certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined that there is a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated together.

Examples of Qualitative Research Approaches

Ethnography

Ethnography as a research design has its origins in social and cultural anthropology, and involves the researcher being directly immersed in the participant’s environment. Through this immersion, the ethnographer can use a variety of data collection techniques with the aim of being able to produce a comprehensive account of the social phenomena that occurred during the research period. That is to say, the researcher’s aim with ethnography is to immerse themselves into the research population and come out of it with accounts of actions, behaviors, events, etc. through the eyes of someone involved in the population. Direct involvement of the researcher with the target population is one benefit of ethnographic research because it can then be possible to find data that is otherwise very difficult to extract and record.

Grounded Theory

Grounded Theory is the “generation of a theoretical model through the experience of observing a study population and developing a comparative analysis of their speech and behavior.” As opposed to quantitative research which is deductive and tests or verifies an existing theory, grounded theory research is inductive and therefore lends itself to research that is aiming to study social interactions or experiences. In essence, Grounded Theory’s goal is to explain for example how and why an event occurs or how and why people might behave a certain way. Through observing the population, a researcher using the Grounded Theory approach can then develop a theory to explain the phenomena of interest.

Phenomenology

Phenomenology is defined as the “study of the meaning of phenomena or the study of the particular”. At first glance, it might seem that Grounded Theory and Phenomenology are quite similar, but upon careful examination, the differences can be seen. At its core, phenomenology looks to investigate experiences from the perspective of the individual. Phenomenology is essentially looking into the ‘lived experiences’ of the participants and aims to examine how and why participants behaved a certain way, from their perspective . Herein lies one of the main differences between Grounded Theory and Phenomenology. Grounded Theory aims to develop a theory for social phenomena through an examination of various data sources whereas Phenomenology focuses on describing and explaining an event or phenomena from the perspective of those who have experienced it.

Narrative Research

One of qualitative research’s strengths lies in its ability to tell a story, often from the perspective of those directly involved in it. Reporting on qualitative research involves including details and descriptions of the setting involved and quotes from participants. This detail is called ‘thick’ or ‘rich’ description and is a strength of qualitative research. Narrative research is rife with the possibilities of ‘thick’ description as this approach weaves together a sequence of events, usually from just one or two individuals, in the hopes of creating a cohesive story, or narrative. While it might seem like a waste of time to focus on such a specific, individual level, understanding one or two people’s narratives for an event or phenomenon can help to inform researchers about the influences that helped shape that narrative. The tension or conflict of differing narratives can be “opportunities for innovation”.

Research Paradigm

Research paradigms are the assumptions, norms, and standards that underpin different approaches to research. Essentially, research paradigms are the ‘worldview’ that inform research. It is valuable for researchers, both qualitative and quantitative, to understand what paradigm they are working within because understanding the theoretical basis of research paradigms allows researchers to understand the strengths and weaknesses of the approach being used and adjust accordingly. Different paradigms have different ontology and epistemologies . Ontology is defined as the "assumptions about the nature of reality” whereas epistemology is defined as the “assumptions about the nature of knowledge” that inform the work researchers do. It is important to understand the ontological and epistemological foundations of the research paradigm researchers are working within to allow for a full understanding of the approach being used and the assumptions that underpin the approach as a whole. Further, it is crucial that researchers understand their own ontological and epistemological assumptions about the world in general because their assumptions about the world will necessarily impact how they interact with research. A discussion of the research paradigm is not complete without describing positivist, postpositivist, and constructivist philosophies.

Positivist vs Postpositivist

To further understand qualitative research, we need to discuss positivist and postpositivist frameworks. Positivism is a philosophy that the scientific method can and should be applied to social as well as natural sciences. Essentially, positivist thinking insists that the social sciences should use natural science methods in its research which stems from positivist ontology that there is an objective reality that exists that is fully independent of our perception of the world as individuals. Quantitative research is rooted in positivist philosophy, which can be seen in the value it places on concepts such as causality, generalizability, and replicability.

Conversely, postpositivists argue that social reality can never be one hundred percent explained but it could be approximated. Indeed, qualitative researchers have been insisting that there are “fundamental limits to the extent to which the methods and procedures of the natural sciences could be applied to the social world” and therefore postpositivist philosophy is often associated with qualitative research. An example of positivist versus postpositivist values in research might be that positivist philosophies value hypothesis-testing, whereas postpositivist philosophies value the ability to formulate a substantive theory.

Constructivist

Constructivism is a subcategory of postpositivism. Most researchers invested in postpositivist research are constructivist as well, meaning they think there is no objective external reality that exists but rather that reality is constructed. Constructivism is a theoretical lens that emphasizes the dynamic nature of our world. “Constructivism contends that individuals’ views are directly influenced by their experiences, and it is these individual experiences and views that shape their perspective of reality”. Essentially, Constructivist thought focuses on how ‘reality’ is not a fixed certainty and experiences, interactions, and backgrounds give people a unique view of the world. Constructivism contends, unlike in positivist views, that there is not necessarily an ‘objective’ reality we all experience. This is the ‘relativist’ ontological view that reality and the world we live in are dynamic and socially constructed. Therefore, qualitative scientific knowledge can be inductive as well as deductive.”

So why is it important to understand the differences in assumptions that different philosophies and approaches to research have? Fundamentally, the assumptions underpinning the research tools a researcher selects provide an overall base for the assumptions the rest of the research will have and can even change the role of the researcher themselves. For example, is the researcher an ‘objective’ observer such as in positivist quantitative work? Or is the researcher an active participant in the research itself, as in postpositivist qualitative work? Understanding the philosophical base of the research undertaken allows researchers to fully understand the implications of their work and their role within the research, as well as reflect on their own positionality and bias as it pertains to the research they are conducting.

Data Sampling

The better the sample represents the intended study population, the more likely the researcher is to encompass the varying factors at play. The following are examples of participant sampling and selection:

Purposive sampling- selection based on the researcher’s rationale in terms of being the most informative.

Criterion sampling-selection based on pre-identified factors.

Convenience sampling- selection based on availability.

Snowball sampling- the selection is by referral from other participants or people who know potential participants.

Extreme case sampling- targeted selection of rare cases.

Typical case sampling-selection based on regular or average participants.

Data Collection and Analysis

Qualitative research uses several techniques including interviews, focus groups, and observation. [1] [2] [3] Interviews may be unstructured, with open-ended questions on a topic and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one on one and is appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be a participant-observer to share the experiences of the subject or a non-participant or detached observer.

While quantitative research design prescribes a controlled environment for data collection, qualitative data collection may be in a central location or in the environment of the participants, depending on the study goals and design. Qualitative research could amount to a large amount of data. Data is transcribed which may then be coded manually or with the use of Computer Assisted Qualitative Data Analysis Software or CAQDAS such as ATLAS.ti or NVivo.

After the coding process, qualitative research results could be in various formats. It could be a synthesis and interpretation presented with excerpts from the data. Results also could be in the form of themes and theory or model development.

Dissemination

To standardize and facilitate the dissemination of qualitative research outcomes, the healthcare team can use two reporting standards. The Consolidated Criteria for Reporting Qualitative Research or COREQ is a 32-item checklist for interviews and focus groups. The Standards for Reporting Qualitative Research (SRQR) is a checklist covering a wider range of qualitative research.

Examples of Application

Many times a research question will start with qualitative research. The qualitative research will help generate the research hypothesis which can be tested with quantitative methods. After the data is collected and analyzed with quantitative methods, a set of qualitative methods can be used to dive deeper into the data for a better understanding of what the numbers truly mean and their implications. The qualitative methods can then help clarify the quantitative data and also help refine the hypothesis for future research. Furthermore, with qualitative research researchers can explore subjects that are poorly studied with quantitative methods. These include opinions, individual's actions, and social science research.

A good qualitative study design starts with a goal or objective. This should be clearly defined or stated. The target population needs to be specified. A method for obtaining information from the study population must be carefully detailed to ensure there are no omissions of part of the target population. A proper collection method should be selected which will help obtain the desired information without overly limiting the collected data because many times, the information sought is not well compartmentalized or obtained. Finally, the design should ensure adequate methods for analyzing the data. An example may help better clarify some of the various aspects of qualitative research.

A researcher wants to decrease the number of teenagers who smoke in their community. The researcher could begin by asking current teen smokers why they started smoking through structured or unstructured interviews (qualitative research). The researcher can also get together a group of current teenage smokers and conduct a focus group to help brainstorm factors that may have prevented them from starting to smoke (qualitative research).

In this example, the researcher has used qualitative research methods (interviews and focus groups) to generate a list of ideas of both why teens start to smoke as well as factors that may have prevented them from starting to smoke. Next, the researcher compiles this data. The research found that, hypothetically, peer pressure, health issues, cost, being considered “cool,” and rebellious behavior all might increase or decrease the likelihood of teens starting to smoke.

The researcher creates a survey asking teen participants to rank how important each of the above factors is in either starting smoking (for current smokers) or not smoking (for current non-smokers). This survey provides specific numbers (ranked importance of each factor) and is thus a quantitative research tool.

The researcher can use the results of the survey to focus efforts on the one or two highest-ranked factors. Let us say the researcher found that health was the major factor that keeps teens from starting to smoke, and peer pressure was the major factor that contributed to teens to start smoking. The researcher can go back to qualitative research methods to dive deeper into each of these for more information. The researcher wants to focus on how to keep teens from starting to smoke, so they focus on the peer pressure aspect.

The researcher can conduct interviews and/or focus groups (qualitative research) about what types and forms of peer pressure are commonly encountered, where the peer pressure comes from, and where smoking first starts. The researcher hypothetically finds that peer pressure often occurs after school at the local teen hangouts, mostly the local park. The researcher also hypothetically finds that peer pressure comes from older, current smokers who provide the cigarettes.

The researcher could further explore this observation made at the local teen hangouts (qualitative research) and take notes regarding who is smoking, who is not, and what observable factors are at play for peer pressure of smoking. The researcher finds a local park where many local teenagers hang out and see that a shady, overgrown area of the park is where the smokers tend to hang out. The researcher notes the smoking teenagers buy their cigarettes from a local convenience store adjacent to the park where the clerk does not check identification before selling cigarettes. These observations fall under qualitative research.

If the researcher returns to the park and counts how many individuals smoke in each region of the park, this numerical data would be quantitative research. Based on the researcher's efforts thus far, they conclude that local teen smoking and teenagers who start to smoke may decrease if there are fewer overgrown areas of the park and the local convenience store does not sell cigarettes to underage individuals.

The researcher could try to have the parks department reassess the shady areas to make them less conducive to the smokers or identify how to limit the sales of cigarettes to underage individuals by the convenience store. The researcher would then cycle back to qualitative methods of asking at-risk population their perceptions of the changes, what factors are still at play, as well as quantitative research that includes teen smoking rates in the community, the incidence of new teen smokers, among others.

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• http://orcid.org/0000-0002-8129-8376 Jane Ferguson 1 ,
• http://orcid.org/0000-0001-9325-3362 Gemma Stringer 2 ,
• http://orcid.org/0000-0002-0696-480X Kieran Walshe 2 ,
• http://orcid.org/0000-0002-2972-7911 Thomas Allen 3 , 4 ,
• http://orcid.org/0000-0003-1621-8648 Christos Grigoroglou 3 ,
• http://orcid.org/0000-0002-2958-915X Darren M Ashcroft 5 ,
• http://orcid.org/0000-0001-6450-5815 Evangelos Kontopantelis 6 , 7
• 1 Health Services Management Centre, School of Social Policy , University of Birmingham , Birmingham , UK
• 2 Alliance Manchester Business School , University of Manchester , Manchester , UK
• 3 Manchester Centre for Health Economics, Division of Population Health, Health Services Research and Primary Care , University of Manchester , Manchester , UK
• 4 Danish Centre for Health Economics , University of Southern Denmark , Odense , Denmark
• 5 NIHR Greater Manchester Patient Safety Research Collaboration (PSRC), Division of Pharmacy and Optometry, Faculty of Biology Medicine and Health , University of Manchester , Manchester , UK
• 6 Division of Informatics, Imaging and Data Sciences , University of Manchester , Manchester , UK
• 7 NIHR School for Primary Care Research, Centre for Primary Care, Division of Population Health, Health Services Research and Primary Care , University of Manchester , Manchester , UK
• Correspondence to Dr Jane Ferguson, Health Services Management Centre, University of Birmingham, Birmingham, UK; j.ferguson.1{at}bham.ac.uk

Background The use of temporary doctors, known as locums, has been common practice for managing staffing shortages and maintaining service delivery internationally. However, there has been little empirical research on the implications of locum working for quality and safety. This study aimed to investigate the implications of locum working for quality and safety.

Methods Qualitative semi-structured interviews and focus groups were conducted with 130 participants, including locums, patients, permanently employed doctors, nurses and other healthcare professionals with governance and recruitment responsibilities for locums across primary and secondary healthcare organisations in the English NHS. Data were collected between March 2021 and April 2022. Data were analysed using reflexive thematic analysis and abductive analysis.

Results Participants described the implications of locum working for quality and safety across five themes: (1) ‘familiarity’ with an organisation and its patients and staff was essential to delivering safe care; (2) ‘balance and stability’ of services reliant on locums were seen as at risk of destabilisation and lacking leadership for quality improvement; (3) ‘discrimination and exclusion’ experienced by locums had negative implications for morale, retention and patient outcomes; (4) ‘defensive practice’ by locums as a result of perceptions of increased vulnerability and decreased support; (5) clinical governance arrangements, which often did not adequately cover locum doctors.

Conclusion Locum working and how locums were integrated into organisations posed some significant challenges and opportunities for patient safety and quality of care. Organisations should take stock of how they work with the locum workforce to improve not only quality and safety but also locum experience and retention.

• Health services research
• Patient safety
• Qualitative research
• Quality improvement

Data availability statement

No data are available.

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See:  https://creativecommons.org/licenses/by/4.0/ .

https://doi.org/10.1136/bmjqs-2023-016699

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WHAT IS ALREADY KNOWN ON THIS TOPIC

Despite longstanding policy concerns about the implications of locum working for quality and safety, there has been little empirical research. Understanding how organisations engage, support and work with locums and how locum doctors integrate and interact with the complex and changing systems in which they work is essential if quality and safety are to be improved.

WHAT THIS STUDY ADDS

This qualitative study examines the perspectives of locums, patients and people who work with locums to identify the implications of temporary medical working for quality and safety.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

Organisations should examine how they engage, support and work with locums. Organisations and locums need to reflect on whether their practices support a collective approach to patient safety and quality of care.

Introduction

Temporary doctors, often known as locums, are a vital resource that enable healthcare organisations to deliver care by flexing capacity and covering staffing gaps. In the United Kingdom, all doctors, other than those in their first year of training after qualifying, can work as a locum. Locum work can vary from very short-term (a single shift) to longer-term assignments (weeks, months or even sometimes years). Locums find work through various platforms, including locum agencies, online job platforms, professional networks or word of mouth. Locum agencies typically have some governance responsibilities (such as compliance with regulations and licensing requirements), but the extent of these responsibilities varies and the NHS in England has no oversight over how recruitment agencies operate. Despite concerns among policymakers, healthcare providers, professional associations and professional regulators about the implications of locum working for quality and safety and cost, 1–3 there is limited robust empirical research to evidence or support those concerns.

The workforce retention crisis is a significant challenge in healthcare internationally 4–6 and persistent understaffing poses a serious risk to patient safety. 7 8 In the UK, high doctor turnover has been linked to poorer service and health outcomes 9 and has led NHS trusts and general practices (GPs) to be ‘overly reliant’ 3 on temporary staff to fill rota gaps. 10 11 Expenditure on temporary staff in the NHS in England increased from £3.45 billion to £5.2 billion between 2021 and 2022. 3 12 The NHS Long Term Workforce Plan aims to reduce reliance on temporary staff and make substantive employment the most cost-effective and attractive option. 3 However, with the vacancy rate in the NHS projected to increase, 13 locums are likely to continue to be essential to maintaining service provision, especially in shortage specialities such as psychiatry. 14

An obvious implication of locum working is a reduced likelihood of organisational and team integration, 15 familiarity and a shared understanding of ‘the way things are done around here’. 16 Locums are likely to be less familiar with teams and other contextual factors relevant to providing safe and effective care 17 and more likely to be situated on the periphery of organisational structures, teams and governance systems 1 18 Teamwork represents a powerful process to improve patient care, 19 20 and trust, shared understanding, communication and collaboration have been associated with better patient outcomes. 21 22 The ability of healthcare teams to develop and maintain team situational awareness, or a shared perception, comprehension and subsequent projection of what is going on in complex and changing clinical environments, has been described as crucial for patient safety. 23 24 Through participation and working together, 25 teams gain an understanding of the roles, skills and competencies of others to demonstrate ‘collective competence’, 26 27 which is critical for healthcare delivery, 28 29 and existing research on locums suggests a need for better integration into teams to improve quality and safety. 30 31

Context matters for patient safety and quality improvement, 32 33 yet the limited evidence 17 relating to locums practice is largely ‘acontextual’ and tends to ignore the role of the organisation in the integration of temporary staff, focusing instead on the potential risks locums present as individual clinicians, 17 30 which is perhaps unsurprising given the liminal space locums occupy. In the UK, responsibility for the quality and safety of healthcare services is shared primarily between organisations and the individual professionals working within them. 34 Organisations are responsible for creating systems and environments that promote and protect clinical governance and enable all doctors to meet their professional obligations, while doctors are expected to participate in the systems and processes put in place by regulators and organisations to protect and improve patient care. 35 However, NHS trusts and primary care organisations procure the services of locum doctors without assuming the responsibilities normally associated with an employer–employee relationship 30 and locums often struggle to participate in teams and governance systems that were designed for doctors working in conventional employment relationships. 18 36

There is longstanding debate about the role of individual accountability in patient safety and how responsibility is distributed between organisations and individuals. 37 A systems approach reasons that adverse events are likely to occur as a result of system failures rather than individual failures, 38 and patients are protected from mistakes by well designed systems and environments that promote safety cultures. 39 But locums are often positioned at the periphery of these systems, 30 and doctors who are new to and also peripheral to organisations, and organisations who are inexperienced with and unsupportive of locums are unlikely to be able to perform optimally. 40

The aim of this research was to provide evidence on how locum working arrangements impact quality and safety and the implications of locum working for patients, locums and health service organisations in primary and secondary care in the English NHS. Locum doctors are an essential and growing part of the healthcare workforce 1 who have been largely ignored in healthcare workforce research. This research addresses a gap in the empirical evidence base on how locum doctor working arrangements affect quality and safety, and provides, for the first time, an in-depth exploration that includes perspectives from patients, locums and the people they work with.

Study design and setting

A qualitative semi-structured interview and focus group study was conducted with locums, people working with locums, and patients with experience of being treated by locums. Participants were purposively sampled through 11 organisations, including NHS trusts, primary care practices, statutory NHS bodies and locum agencies. Locum doctor participants were recruited through these organisations, locum recruitment agencies and networks. We used purposive, snowball and convenience sampling, drawing on intelligence from stakeholders, including our project advisory group, to identify and recruit organisations and participants. Patient participants were recruited through patient and contributor forums. The forum involved active partnership between patients and researchers in the research process to develop research which is relevant and useful to patient and public needs. Participant demographics were monitored to ensure representation across a broad range of roles in primary and secondary care and to increase diversity in terms of gender and ethnicity (see table 1 ).

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Characteristics of study participants

Data collection

Three semi-structured interview and focus group guides were developed for use with locums, people working with locums and patients with experience of being treated by locums (as shown in online supplemental files 1-3 ). Our previous review of the literature relating to quality and safety and locum work 17 informed the schedules as well as the initial coding and thematic development. Schedules were also refined and informed by our patient and public involvement (PPI) forum and our project advisory group. Each schedule was intended to explore locum doctor working arrangements with a particular focus on understanding how locum doctor working may affect the safety and quality of care and what strategies or systems organisations and individuals used to assure or improve quality and safety. The topic guides for locums and people working with locums also covered governance and support, the impact of the COVID pandemic and policies and initiatives used to support locums.

Supplemental material

Interviews and focus groups were transcribed verbatim by a professional transcription company and organised into codes and themes using the software package NVivo. 41 Reflexive thematic analysis (RTA) 42 was used and involved familiarisation with the data by reading and re-reading the transcripts and field notes; coding the dataset and collating all relevant data extracts; generating initial themes by examining the codes and collated data to identify significant broader patterns of meaning across the dataset; reviewing themes by questioning whether themes answered the research question and told a convincing story of the data and combining, splitting and discarding themes as necessary; defining and naming themes by developing a detailed analysis of each theme; and finally the analytical write up which positioned the analysis in relation to existing literature. 43 RTA acknowledges the active role of researchers in knowledge production and the researcher’s subjectivity as the analytic resource. 42 RTA recognises interpretive variability between researchers based on differences in their knowledge and skills, theoretical assumptions and differences in how they responded to the dataset is acknowledged and expected. 42 The research team worked reflexively discussing their personal biases and their potential impact on the research at regular meetings throughout the data collection and analysis period. Our PPI forum were also involved in data collection and analysis, and offered a form of triangulation to enhance rigour, challenge and alternative interpretations of the findings. 44 Analysis adopted a constructionist epistemology, in that while we acknowledged the importance of recurrence in generating themes, meaning and meaningfulness were the central criteria in the coding process. 42

After themes were developed, an abductive approach was taken to position findings against a background of existing theory and knowledge. 17 30 This provided a way of constructing empirically based theorisations without confining theory to predefined concepts. 45 This approach integrated inductive data-driven coding with deductive theory-driven interpretation; aiming to find a middle ground between inductive and deductive methods and the most logical solution and useful explanation for phenomena. 45

We conducted 130 interviews with 88 participants who worked in healthcare and 42 patients took part in focus groups and one-to-one interviews. Participants included locums, permanently employed doctors; nurses and other health professionals; medical directors/clinical leaders; responsible officers (ROs are accountable for local clinical governance processes and focus on the performance of doctors) and appraisers; leads for medical staffing and clinical governance and practice managers (see table 2 ). Three experienced qualitative researchers (JF, GS and KW) and two members of the PPI forum (MM and MS) carried out five focus groups with 30 patients, and JF and GS carried out 12 one-to-one interviews. Data were collected between March 2021 and April 2022 during the COVID pandemic using video conferencing software (n=126) or over the phone (n=4) at a time convenient to participants. Interviews and focus groups ranged in length from 23 to 171 min, with the average interview being 59 min.

Healthcare organisations and participant roles

Thematic framework

Our findings are presented under five broad and interrelated themes that examine how locum work relates to and impacts quality and safety: ‘familiarity’ with an organisation and its patients and staff; ‘balance and stability’ in services with lots of locums; ‘discrimination and exclusion’ towards locums and their effects; ‘defensive practice’ by locums; and the positioning of locums outside clinical governance arrangements.

Familiarity: knowing who, where and how

Locums described often working in unfamiliar environments, sometimes with minimal induction and varying levels of support. Unfamiliarity, lack of access to or other restrictions on computer systems, policies, procedures and buildings meant that locums were not always able to do their job safely, productively or effectively.

That’s probably the biggest sort of safety aspect that sticks in my mind, is that it is unbelievably frustrating to have to learn a whole new set of patients from day to day … when I was signed up to four different hospitals, plus the locum agencies, I very quickly realised that not only is it the fact that you don’t know the patients from day to day, if you’re chopping and changing site the whole time, then store cupboards are laid out differently, ways of contacting relevant staff members are different, you’ve got to recognise what code to put in to bleep someone that’s different at every single site. (Interview 23, locum, secondary care)

Locum working sometimes created extra work for permanent staff who were responsible for inducting, training and supervising locums. The amount of additional workload was dependent on contextual factors, such as the experience of the locum, organisational support and length of placement, access to systems and what terms and conditions locums or organisations had negotiated. Locum reliance on permanent staff meant that care could be delayed, partially completed or not completed at all, which sometimes caused resentment.

Some of the things that we don’t … like, for example, procedures of limited clinical value that we don’t refer in for, they won’t know about those in our areas … So they’ll do referrals that we then will get pulled on. They’ll maybe prescribe medications that are not first line medications within our own formulary. So we see quite a bit of that, you know, there’s quite a lot of tidying up to be done afterwards or work. They generate that. So whilst we meet the patient numbers, they create a lot of work for the rest of the team. (Interview 3, practice manager, primary care)

Locums mitigated risks related to working in unfamiliar environments by avoiding organisations considered chaotic or unsafe, working below their grade to avoid having responsibility in unfamiliar organisations where they may not be supported or included in the team or working in a limited number of organisations to increase familiarity.

Most locums take jobs, locum work below their grade. So a person who’s at a registrar level would take a locum work as an SHO (senior house officer), because they don't know the trust that well. (Interview 55, locum, secondary care)

However, lack of familiarity and discontinuity could at times be beneficial for patients and organisations as fresh perspectives offered by locums led to different routes of treatment or management, and could alter organisational cultures or practices.

So that [locum] doctor, through that line of questioning and not having any sort of prior history … ordered the right tests and didn’t feel constrained in that practice about what tests that they could order. And someone subsequently … because when you get referred to hospital, the consultant said that that doctor was very much on the ball. And, of course, that’s a change to lifelong medication. And literally within a month of the medication kicking in, it transformed my life. (Focus group A, patient 1)

Balance and stability

The balance between locum and permanent staff had implications for quality and safety, organisational leadership, long-term planning and governance. Locums were often employed to deliver immediate services and consequently were less likely to be involved in team and organisational development. Locums recognised that having ‘an NHS run by locums’ was detrimental to quality and safety, and some avoided organisations that were locum dependent for this reason. Well functioning established teams were regarded as better able to incorporate a small number of locums without being significantly impacted.

Locum work, my view on it is they’re there to fill a gap. They shouldn’t be relied upon to deliver a service Monday to Friday, day in, day out, week in, week out. And unfortunately my trust see it as that, though, that’s my worry that they feel they’re not just plugging a gap, they’re almost as a workforce … (Interview 84, lead GP, primary and secondary care)

Departments that were disproportionately locum dependent were often perceived to lack clinical leadership and direction. An absence of consistent medical leadership meant that quality improvement was slower or less likely to happen, and trusting relationships between staff were harder to establish.

If you get a department that is disproportionately locum dependent, then it stagnates, it doesn't progress. Things like implementation of new NICE guidance, for example, that sort of thing tends not to happen or happen less well, less quickly. (Interview 30, responsible officer, secondary care)

Discrimination and exclusion

Most locums described negative behaviours and attitudes from staff and some patients, which impacted their involvement, inclusion and experiences in organisations. Negative attitudes and behaviours towards locums could affect turnover, locum well-being, team dynamics and potentially patient safety. Perceived disparities between pay, workload, competence and organisational and team commitment between locums and permanent staff could be sources of resentment and influenced how locums were treated and viewed. This compromised staff communication and reduced the sharing of important patient information.

I guess like any temporary post really, you struggle to invest in them, don't necessarily see them as being part of the team. Not very positive about them, particularly junior staff, particularly in the acute trusts. We'd have locums refusing to come back because of the treatment of the midwives. (Interview 86, clinical lead, secondary care)

Negative perceptions of competency and safety meant that locums were often stigmatised, marginalised and excluded. The identity of locum intersected and overlapped with other identities and was described as ‘layering up’ with ethnicity and gender to further exacerbate discrimination.

Oh, doctors coming over from Germany. There was one locum … that administered a dose of something and the patient died, and then there’s this whole layer of extra negativity attached to locum doctors in general because of what one doctor did, and that doctor happened to be someone from a different ethnicity … As a UK born and qualified doctor I can see that those overseas get it but I can also see that I have experienced that as well. So yeah, it can layer up with the whole locum thing. (Interview 59, locum GP, primary care)

A sense of othering and being seen as less was particularly evident during the COVID pandemic when resources were limited. Some locums described how they were not afforded the same protections as permanent members of staff and were sometimes expected to take on riskier work.

I’ve worked in another practice where, because they live on locums and they live on ad hoc locums, you’re a piece of dirt under the shoe. You don’t get gloves, you didn’t have aprons, you didn’t have a face visor, you didn’t have safety specs, you have to ask for a mask. Not only are you not treated as a service provider, you’re not treated as a colleague, someone with knowledge. (Interview 44, locum GP)

Defensive practice by locums

Locums recognised that they were likely to be scapegoated if things went wrong, and some locums described being more likely to practice defensively. Defensive practice has been defined as deviation from standard practice to avoid litigation, complaints or criticism. 46 Participants reported instances of defensive practice which involved providing services (eg, tests, referrals) or avoiding high-risk decisions, usually to reduce the risk of adverse outcomes such as patient complaints or potential termination of contract at short notice. Locums described practicing defensively because they were attempting to practice as safely as possible in complex unfamiliar environments where they were professionally isolated and perceived negatively. Permanent members of staff could perceive that locums practiced defensively because they lacked confidence in their abilities. The diversion of resources away from more clinically relevant activities placed additional burden on teams, who were already facing significant workload challenges.

Being risk averse and practising defensive medicine usually means more tests, more referrals, whereas holding risk tends to be disadvantageous for you as a locum because what’s the benefit to you of not doing that. You’re benefiting the system by rationing resource, the patient won’t thank you. (Interview 35, locum GP)

Locums described avoiding making decisions when risks to employment or medical licenses were perceived as high. Locums felt they were more vulnerable to criticisms of their clinical competence and disempowered to make decisions. Others felt that some locums were simply avoiding work and evaded responsibility for patients by pushing work onto others or into the future.

You don’t interfere, very simple. Over time locums have learned that if you interfere, if you participate in the team, you participate in patient care, [and this] is when you get into trouble … Well most of the locums that I know will just say, okay, there’s already somebody else who’s made a decision, it’s not my job to make a decision, I just follow through. If things go wrong, call the senior person and be done with it, that’s the end of my role. Actually doing something to protect a patient is not important for a locum because the risk is too high. (Interview 55, locum, secondary care)

Locums fall outside clinical governance arrangements

Governance practices in relation to locums varied widely and were not generally regarded as being as robust in comparison to permanently employed doctors. Responsibility for involving locum doctors in performance feedback, supervision, educational opportunities, appraisal and quality improvement was unclear. While some organisations included locums in their governance activities, others regarded locum work as transactional; where the locum was there to provide a finite service and the organisation assumed no responsibilities for their performance, development or oversight. There were concerns that governance structures were modelled on and designed for permanently employed doctors and did not work for locums. When deficits in performance were undetected or unaddressed, doctor performance and patient safety could be jeopardised.

I think it’s a remote world. It’s like a cloud, you know, it’s like the cloud. We talk about the cloud when it comes to storing information. And I think locum world is a bit like that … And I don’t know the doctors anywhere like as much as I did when I was an RO in the NHS, I knew them all personally. If I used to have a problem, I used to get them in my office there and then, chat it all through, sort it. Can’t do that in locum world, it might take me four days to get hold of the doctor, some of them won’t respond immediately … They don’t know me and I don’t know them. (Interview 51, responsible officer, locum agency)

The absence of typical recruitment processes (involving meeting a doctor, carrying out an interview and following up on references) meant that healthcare organisations were reliant on partial information from locum agencies, which made it difficult to determine competency, scope of practice and suitability for a role. However, staff shortages and a requirement to meet safe staffing ratios meant that organisational leaders had little recourse of action if they were unsure about a doctor’s capability, which caused anxiety and frustration. This suggests that the provision of healthcare superseded ensuring safety standards and necessitated accepting one of two objectionable alternatives; accepting gaps in staffing that may jeopardise patient safety or accepting unknown doctors; each of which may compromise patient safety.

If a locum turns up and I have serious doubts about their ability to do the job to the required standard, I don’t have any recourse … And therefore I’m in a position where either I accept this locum or I don’t. There’s not much in the way of middle ground. Not accepting them is a really unpalatable choice because if I say look, I’m sorry, I don’t think you’re up to this, I think you should go home, that leaves me with a gap. (Interview 30, consultant and responsible officer, secondary care)

Similar governance and information sharing problems were described by locum agencies and NHS organisations; both described difficulties in gathering and sharing feedback. When concerns were raised, participants were often uncertain as to what happened to the information they provided and whether it was shared or acted on. Locums often did not get to hear about concerns raised about them, meaning learning opportunities were missed.

It would give you more confidence if you heard back. And sometimes I'll pick up the phone and you try to do the best you can to make sure this information gets passed on. But I just have this nagging doubt that I'm not always convinced it does. (Interview 30, responsible officer, secondary care)

There was also a perception from some locum agency responsible officers that while most locum doctors were excellent, there were some locums who were isolated and in need of organisational and professional support.

You have to accept that whilst within the agency world, 80 per cent of the doctors we place are excellent, and have no problems, and do a great job, perhaps 20 per cent are those that have shaken down to that 20 per cent in the agency world, because they’ve not succeeded in the NHS, they’ve not got a substantive place, they are lost souls. And they are less able to cope with the vicissitudes of busy clinical life and professional life within a large organisation such as the NHS. (Interview 47, responsible officer, locum agency)

Our findings provide some profound and concerning insights for patient safety and quality of care. The ways in which locums were recruited, inducted, deployed and integrated, and supported by organisations undoubtedly affected quality and safety. Our findings indicate that regardless of their level of experience, it was unlikely that locum doctors would be able to function optimally in unfamiliar environments; and organisations who had poor supportive infrastructure and governance mechanisms for locums were less likely to deliver high-quality safe services.

Locums were often regarded as organisational outsiders—positioned at the periphery of the team and the organisation. The implications of transience and peripheral participation were weaker relationships with organisations, teams, peers and patients, leading some to suggest locum working is better suited to experienced doctors. 47 Consistent with previous research, 48 frequent variation in process, systems and equipment, combined with disruption in relationships and a lack of mutual awareness of team skills and competencies, decreased collective competence, placed additional burden on the wider healthcare team and reduced patient safety. As others have found in research on safe staffing and nursing, 49 temporary staff are not effective substitutes for staff who regularly work in the organisation. Safe medical staffing is not just achieved by filling rota gaps, but also team composition and doctors’ familiarity with the team and organisation must be taken into account. Regulatory agencies should consider locum usage in their inspections and perhaps be particularly concerned when organisations have ‘services run on locums’.

Our research found, as others have, 18 that organisations and doctors sometimes struggled to meet their governance obligations and that governance activities differed based on contractual status and organisational policies and norms, with systems being less robust for locums. This research has highlighted that much still needs to be done to develop governance systems that promote and protect the interests of patients and create an environment which supports locum doctors in meeting their professional obligations.

More positively, locum doctors are a potentially valuable source of information about safety concerns, faulty systems or poor conduct. 50 Locums move between organisations, have broad systems knowledge and are perhaps better placed to identify some quality and safety issues than permanent doctors. However, findings indicate opportunities for shared learning were often missed. Locums recognised their precarity and vulnerability when offering second opinions, sharing improvement ideas or voicing safety concerns; meaning opinions were not always offered and concerns were not always raised. Failure to voice concerns is a persistent problem in healthcare, 51 and locums may be even less inclined to offer potentially valuable information about safety concerns because of their perceptions of unsupportive organisational climates.

Our findings shed light on how temporary doctors fit into the enduring debate 37 around how responsibility between organisational systems and individual professionals is distributed. Locums appear to represent a subsection of the medical profession for whom the wider paradigm shift from a focus on individual blame to a systems approach 52 appeared not to have been made. Locums were often not regarded as a part of the organisation, and therefore the system, and not afforded the same protections as permanent staff when things went wrong. Blaming locums when things go wrong and punishing or sanctioning individuals who make errors in contexts that were not designed to incorporate temporary workers may divert attention from understanding inadequately designed, poorly functioning systems, or indeed the individual practice of other doctors. While we should take into account systemic factors that impede locums from performing safely, we should expect high standards of healthcare professionals, be cognisant of individual agency and recognise the distinction between blaming someone and holding them responsible. 53

Strengths and limitations

This large qualitative study explores locum working and quality and safety in an under-researched, yet growing area of the medical workforce. However, sites were all based in England, which means caution should be taken when extrapolating findings. Similar research in other countries and contexts to understand more about locum doctor working and quality and safety is therefore important. It is possible that our sample may have been skewed towards locums, healthcare professionals and patients who had more negative perceptions and experiences, although accounts resonate with previous research 30 and patient perspectives were generally positive. Our data were collected during the COVID pandemic, which may have affected findings as there was a reduction in locum working during that time 10 11 ; it also meant we were unable to carry out observations, which would have strengthened our findings and mitigated some of the inherent limitations of interviews, such as recall bias. We used both one-to-one interviews and focus groups in data collection. Although flexibility in data collection meant that participants had the option to take part in an interview or a focus group, these methods are used for different reasons and produce different data. There may have been differences in what participants disclosed depending on the method

Our findings show that the way in which doctors who worked on a temporary basis were integrated into organisations posed some significant challenges and opportunities for patient safety and quality of care, and that both organisations and locums had a part to play in improvement. Doctors working as locums are a heterogeneous group with differing backgrounds, experiences, skills and capabilities that likely reflect the variability seen in the wider population of doctors. Locums are working in the same pressured and imperfect systems as other health workers; it is vital that systemic problems are not mistaken for problems about individuals and important to recognise that a locum is not a type of doctor but a way of working. Our findings are a call to action for organisations to take stock of how they engage, support and work with locums, and asks both locums and organisations to reflect on whether their practices support a collective approach to patient safety and quality of care.

Ethics statements

Patient consent for publication.

Not applicable.

Ethics approval

This study involves human participants and was approved by the Health Research Authority North West—Haydock Research Ethics Committee 20/NW/0386. Participants gave informed consent to participate in the study before taking part.

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Supplementary materials

Supplementary data.

This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

• Data supplement 1
• Data supplement 2
• Data supplement 3
• Data supplement 4

Twitter @janefergo, @@kieran_walshe

Contributors JF, KW, DA, TA and EK conceived the study. Recruitment was led by JF and supported by GS. JF, GS and KW conducted the interviews, reviewed and analysed the transcripts, and JF wrote the first version of the manuscript. Two members of the patient and public involvement (PPI) forum also assisted with focus groups. JF conducted data analysis with input from KW and GS, the PPI forum, and review by all authors. JF and KW were involved in initial critical review and revision of the manuscript, followed by all authors. All authors read and approved the final version of the manuscript. JF is the guarantor.

Funding This study was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR128349), and the NIHR Greater Manchester Patient Safety Research Collaboration (PSRC). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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• Editorial Locums: threat or opportunity Richard Lilford BMJ Quality & Safety 2024; - Published Online First: 16 Apr 2024. doi: 10.1136/bmjqs-2023-016951

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• Research article
• Open access
• Published: 15 April 2024

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography

• Trisha Greenhalgh   ORCID: orcid.org/0000-0003-2369-8088 1 ,
• Julie L. Darbyshire 1 ,
• Cassie Lee 2 ,
• Emma Ladds 1 &
• Jenny Ceolta-Smith 3  

BMC Medicine volume  22 , Article number:  159 ( 2024 ) Cite this article

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Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called “postcode lottery” of care. The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition.

In 2021–2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge.

Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning , in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients).

Not all variation in long covid services is unwarranted. Largely because long covid’s manifestations are so varied and comorbidities common, generic “evidence-based” standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients’ unique needs.

Study registration

NCT05057260, ISRCTN15022307.

Peer Review reports

The term “long covid” [ 1 ] means prolonged symptoms following SARS-CoV-2 infection not explained by an alternative diagnosis [ 2 ]. It embraces the US term “post-covid conditions” (symptoms beyond 4 weeks) [ 3 ], the UK terms “ongoing symptomatic covid-19” (symptoms lasting 4–12 weeks) and “post covid-19 syndrome” (symptoms beyond 12 weeks) [ 4 ] and the World Health Organization’s “post covid-19 condition” (symptoms occurring beyond 3 months and persisting for at least 2 months) [ 5 ]. Long covid thus defined is extremely common. In UK, for example, 1.8 million of a population of 67 million met the criteria for long covid in early 2023 and 41% of these had been unwell for more than 2 years [ 6 ].

Long covid is characterized by a constellation of symptoms which may include breathlessness, fatigue, muscle and joint pain, chest pain, memory loss and impaired concentration (“brain fog”), sleep disturbance, depression, anxiety, palpitations, dizziness, gastrointestinal problems such as diarrhea, skin rashes and allergy to food or drugs [ 2 ]. These lead to difficulties with essential daily activities such as washing and dressing, impaired exercise tolerance and ability to work, and reduced quality of life [ 2 , 7 , 8 ]. Symptoms typically cluster (e.g. in different patients, long covid may be dominated by fatigue, by breathlessness or by palpitations and dizziness) [ 9 , 10 ]. Long covid may follow a fairly constant course or a relapsing and remitting one, perhaps with specific triggers [ 11 ]. Overlaps between fatigue-dominant subtypes of long covid, myalgic encephalomyelitis and chronic fatigue syndrome have been hypothesized [ 12 ] but at the time of writing remain unproven.

Long covid has been a contested condition from the outset. Whilst long-term sequelae following other coronavirus (SARS and MERS) infections were already well-documented [ 13 ], SARS-CoV-2 was originally thought to cause a short-lived respiratory illness from which the patient either died or recovered [ 14 ]. Some clinicians dismissed protracted or relapsing symptoms as due to anxiety or deconditioning, especially if the patient had not had laboratory-confirmed covid-19. People with long covid got together in online groups and shared accounts of their symptoms and experiences of such “gaslighting” in their healthcare encounters [ 15 , 16 ]. Some groups conducted surveys on their members, documenting the wide range of symptoms listed in the previous paragraph and showing that whilst long covid is more commonly a sequel to severe acute covid-19, it can (rarely) follow a mild or even asymptomatic acute infection [ 17 ].

Early publications on long covid depicted a post-pneumonia syndrome which primarily affected patients who had been hospitalized (and sometimes ventilated) [ 18 , 19 ]. Later, covid-19 was recognized to be a multi-organ inflammatory condition (the pneumonia, for example, was reclassified as pneumonitis ) and its long-term sequelae attributed to a combination of viral persistence, dysregulated immune response (including auto-immunity), endothelial dysfunction and immuno-thrombosis, leading to damage to the lining of small blood vessels and (thence) interference with transfer of oxygen and nutrients to vital organs [ 20 , 21 , 22 , 23 , 24 ]. But most such studies were highly specialized, laboratory-based and written primarily for an audience of fellow laboratory researchers. Despite demonstrating mean differences in a number of metabolic variables, they failed to identify a reliable biomarker that could be used routinely in the clinic to rule a diagnosis of long covid in or out. Whilst the evidence base from laboratory studies grew rapidly, it had little influence on clinical management—partly because most long covid clinics had been set up with impressive speed by front-line clinical teams to address an immediate crisis, with little or no input from immunologists, virologists or metabolic specialists [ 25 ].

Studies of the patient experience revealed wide geographical variation in whether any long covid services were provided and (if they were) which patients were eligible for these and what tests and treatments were available [ 26 ]. An interim UK clinical guideline for long covid had been produced at speed and published in December 2020 [ 27 ], but it was uncertain about diagnostic criteria, investigations, treatments and prognosis. Early policy recommendations for long covid services in England, based on wide consultation across UK, had proposed a tiered service with “tier 1” being supported self-management, “tier 2” generalist assessment and management in primary care, “tier 3” specialist rehabilitation or respiratory follow-up with oversight from a consultant physician and “tier 4” tertiary care for patients with complications or complex needs [ 28 ]. In 2021, ring-fenced funding was allocated to establish 90 multidisciplinary long covid clinics in England [ 29 ]; some clinics were also set up with local funding in Scotland and Wales. These clinics varied widely in eligibility criteria, referral pathways, staffing mix (some had no doctors at all) and investigations and treatments offered. A further policy document on improving long covid services was published in 2022 [ 30 ]; it recommended that specialist long covid clinics should continue, though the long-term funding of these services remains uncertain [ 31 ]. To build the evidence base for delivering long covid services, major programs of publicly funded research were commenced in both UK [ 32 ] and USA [ 33 ].

In short, at the time this study began (late 2021), there appeared to be much scope for a program of quality improvement which would capture fast-emerging research findings, establish evidence-based standards and ensure these were rapidly disseminated and consistently adopted across both specialist long covid services and in primary care.

Quality improvement collaboratives

The quality improvement movement in healthcare was born in the early 1980s when clinicians and policymakers US and UK [ 34 , 35 , 36 , 37 ] began to draw on insights from outside the sector [ 38 , 39 , 40 ]. Adapting a total quality management approach that had previously transformed the Japanese car industry, they sought to improve efficiency, reduce waste, shift to treating the upstream causes of problems (hence preventing disease) and help all services approach the standards of excellence achieved by the best. They developed an approach based on (a) understanding healthcare as a complex system (especially its key interdependencies and workflows), (b) analysing and addressing variation within the system, (c) learning continuously from real-world data and (d) developing leaders who could motivate people and help them change structures and processes [ 41 , 42 , 43 , 44 ].

Quality improvement collaboratives (originally termed “breakthrough collaboratives” [ 45 ]), in which representatives from different healthcare organizations come together to address a common problem, identify best practice, set goals, share data and initiate and evaluate improvement efforts [ 46 ], are one model used to deliver system-wide quality improvement. It is widely assumed that these collaboratives work because—and to the extent that—they identify, interpret and implement high-quality evidence (e.g. from randomized controlled trials).

Research on why quality improvement collaboratives succeed or fail has produced the following list of critical success factors: taking a whole-system approach, selecting a topic and goal that fits with organizations’ priorities, fostering a culture of quality improvement (e.g. that quality is everyone’s job), engagement of everyone (including the multidisciplinary clinical team, managers, patients and families) in the improvement effort, clearly defining people’s roles and contribution, engaging people in preliminary groundwork, providing organizational-level support (e.g. chief executive endorsement, protected staff time, training and support for teams, resources, quality-focused human resource practices, external facilitation if needed), training in specific quality improvement techniques (e.g. plan-do-study-act cycle), attending to the human dimension (including cultivating trust and working to ensure shared vision and buy-in), continuously generating reliable data on both processes (e.g. current practice) and outcomes (clinical, satisfaction) and a “learning system” infrastructure in which knowledge that is generated feeds into individual, team and organizational learning [ 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ].

The quality improvement collaborative approach has delivered many successes but it has been criticized at a theoretical level for over-simplifying the social science of human motivation and behaviour and for adopting a somewhat mechanical approach to the study of complex systems [ 55 , 56 ]. Adaptations of the original quality improvement methodology (e.g. from Sweden [ 57 , 58 ]) have placed greater emphasis on human values and meaning-making, on the grounds that reducing the complexities of a system-wide quality improvement effort to a set of abstract and generic “success factors” will miss unique aspects of the case such as historical path dependencies, personalities, framing and meaning-making and micropolitics [ 59 ].

Perhaps this explains why, when the abovementioned factors are met, a quality improvement collaborative’s success is more likely but is not guaranteed, as a systematic review demonstrated [ 60 ]. Some well-designed and well-resourced collaboratives addressing clear knowledge gaps produced few or no sustained changes in key outcome measures [ 49 , 53 , 60 , 61 , 62 ]. To identify why this might be, a detailed understanding of a service’s history, current challenges and contextual constraints is needed. This explains our decision, part-way through the study reported here, to collect rich contextual data on participating sites so as to better explain success or failure of our own collaborative.

Warranted and unwarranted variation in clinical practice

A generation ago, Wennberg described most variation in clinical practice as “unwarranted” (which he defined as variation in the utilization of health care services that cannot be explained by variation in patient illness or patient preferences) [ 63 ]. Others coined the term “postcode lottery” to depict how such variation allegedly impacted on health outcomes [ 64 ]. Wennberg and colleagues’ Atlas of Variation , introduced in 1999 [ 65 ], and its UK equivalent, introduced in 2010 [ 66 ], described wide regional differences in the rates of procedures from arthroscopy to hysterectomy, and were used to prompt services to identify and address examples of under-treatment, mis-treatment and over-treatment. Numerous similar initiatives, mostly based on hospital activity statistics, have been introduced around the world [ 66 , 67 , 68 , 69 ]. Sutherland and Levesque’s proposed framework for analysing variation, for example, has three domains: capacity (broadly, whether sufficient resources are allocated at organizational level and whether individuals have the time and headspace to get involved), evidence (the extent to which evidence-based guidelines exist and are followed), and agency (e.g. whether clinicians are engaged with the issue and the effect of patient choice) [ 70 ].

Whilst it is clearly a good idea to identify unwarranted variation in practice, it is also important to acknowledge that variation can be warranted . The very act of measuring and describing variation carries great rhetorical power, since revealing geographical variation in any chosen metric effectively frames this as a problem with a conceptually simple solution (reducing variation) that will appeal to both politicians and the public [ 71 ]. The temptation to expose variation (e.g. via visualizations such as maps) and address it in mechanistic ways should be resisted until we have fully understood the reasons why it exists, which may include perverse incentives, insufficient opportunities to discuss cases with colleagues, weak or absent feedback on practice, unclear decision processes, contested definitions of appropriate care and professional challenges to guidelines [ 72 ].

Research question, aims and objectives

Research question.

What is quality in long covid care and how can it best be achieved?

To identify best practice and reduce unwarranted variation in UK long covid services.

To explain aspects of variation in long covid services that are or may be warranted.

Our original objectives were to:

Establish a quality improvement collaborative for 10 long covid clinics across UK.

Use quality improvement methods in collaboration with patients and clinic staff to prioritize aspects of care to improve. For each priority topic, identify best (evidence-informed) clinical practice, measure performance in each clinic, compare performance with a best practice benchmark and improve performance.

Produce organizational case studies of participating long covid clinics to explain their origins, evolution, leadership, ethos, population served, patient pathways and place in the wider healthcare ecosystem.

Examine these case studies to explain variation in practice, especially in topics where the quality improvement cycle proves difficult to follow or has limited impact.

The LOCOMOTION study

LOCOMOTION (LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS) was a 30-month multi-site case study of 10 long covid clinics (8 in England, 1 in Wales and 1 in Scotland), beginning in 2021, which sought to optimise long covid care. Each clinic offered multidisciplinary care to patients referred from primary or secondary care (and, in some cases, self-referred), and held regular multidisciplinary team (MDT) meetings, mostly online via Microsoft Teams, to discuss cases. A study protocol for LOCOMOTION, with details of ethical approvals, management, governance and patient involvement has been published [ 25 ]. The three main work packages addressed quality improvement, technology-supported patient self-management and phenotyping and symptom clustering. This paper reports on the first work package, focusing mainly on qualitative findings.

Setting up the quality improvement collaborative

We broadly followed standard methodology for “breakthrough” quality improvement collaboratives [ 44 , 45 ], with two exceptions. First, because of geographical distance, continuing pandemic precautions and developments in videoconferencing technology, meetings were held online. Second, unlike in the original breakthrough model, patients were included in the collaborative, reflecting the cultural change towards patient partnerships since the model was originally proposed 40 years ago.

Each site appointed a clinical research fellow (doctor, nurse or allied health professional) funded partly by the LOCOMOTION study and partly with clinical sessions; some were existing staff who were backfilled to take on a research role whilst others were new appointments. The quality improvement meetings were held approximately every 8 weeks on Microsoft Teams and lasted about 2 h; there was an agenda and a chair, and meetings were recorded with consent. The clinical research fellow from each clinic attended, sometimes joined by the clinical lead for that site. In the initial meeting, the group proposed and prioritized topics before merging their consensus with the list of priority topics generated separately by patients (there was much overlap but also some differences).

In subsequent meetings, participants attempted to reach consensus on how to define, measure and achieve quality for each priority topic in turn, implement this approach in their own clinic and monitor its impact. Clinical leads prepared illustrative clinical cases and summaries of the research evidence, which they presented using Microsoft Powerpoint; the group then worked towards consensus on the implications for practice through general discussion. Clinical research fellows assisted with literature searches, collected baseline data from their own clinic, prepared and presented anonymized case examples, and contributed to collaborative goal-setting for improvement. Progress on each topic was reviewed at a later meeting after an agreed interval.

An additional element of this work package was semi-structured interviews with 29 patients, recruited from 9 of the 10 participating sites, about their clinic experiences with a view to feeding into service improvement (in the other site, no patient volunteered).

Our patient advisory group initially met separately from the quality improvement collaborative. They designed a short survey of current practice and sent it to each clinic; the results of this informed a prioritization exercise for topics where they considered change was needed. The patient-generated list was tabled at the quality improvement collaborative discussions, but patients were understandably keen to join these discussions directly. After about 9 months, some patient advisory group members joined the regular collaborative meetings. This dynamic was not without its tensions, since sharing performance data requires trust and there were some concerns about confidentiality when real patient cases were discussed with other patients present.

How evidence-informed quality targets were set

At the time the study began, there were no published large-scale randomized controlled trials of any interventions for long covid. We therefore followed a model used successfully in other quality improvement efforts where research evidence was limited or absent or it did not translate unambiguously into models for current services. In such circumstances, the best evidence may be custom and practice in the best-performing units. The quality improvement effort becomes oriented to what one group of researchers called “potentially better practices”—that is, practices that are “developed through analysis of the processes of care, literature review, and site visits” (page 14) [ 73 ]. The idea was that facilitated discussion among clinical teams, drawing on published research where available but also incorporating clinical experience, established practice and systematic analysis of performance data across participating clinics would surface these “potentially better practices”—an approach which, though not formally tested in controlled trials, appears to be associated with improved outcomes [ 46 , 73 ].

Adding an ethnographic component

Following limited progress made on some topics that had been designated high priority, we interviewed all 10 clinical research fellows (either individually or, in two cases, with a senior clinician present) and 18 other clinic staff (five individually plus two groups of 5 and 8), along with additional informal discussions, to explore the challenges of implementing the changes that had been agreed. These interviews were not audiotaped but detailed notes were made and typed up immediately afterwards. It became evident that some aspects of what the collaborative had deemed “evidence-informed” care were contested by front-line clinic staff, perceived as irrelevant to the service they were delivering, or considered impossible to implement. To unpack these issues further, the research protocol was amended to include an ethnographic component.

TG and EL (academic general practitioners) and JLD (a qualitative researcher with a PhD in the patient experience) attended a total of 45 MDT meetings in participating clinics (mostly online or hybrid). Staff were informed in advance that there would be an observer present; nobody objected. We noted brief demographic and clinical details of cases discussed (but no identifying data), dilemmas and uncertainties on which discussions focused, and how different staff members contributed.

TG made 13 in-person visits to participating long covid clinics. Staff were notified in advance; all were happy to be observed. Visits lasted between 5 and 8 h (54 h in total). We observed support staff booking patients in and processing requests and referrals, and shadowed different clinical staff in turn as they saw patients. Patients were informed of our presence and its purpose beforehand and given the opportunity to decline (three of 53 patients approached did). We discussed aspects of each case with the clinician after the patient left. When invited, we took breaks with staff and used these as an opportunity to ask them informally what it was like working in the clinic.

Ethnographic observation, analysis and reporting was geared to generating a rich interpretive account of the clinical, operational and interpersonal features of each clinic—what Van Maanen calls an “impressionist tales” [ 74 ]. Our work was also guided by the principles set out by Golden-Biddle and Locke, namely authenticity (spending time in the field and basing interpretations on these direct observations), plausibility (creating a plausible account through rich persuasive description) and criticality (e.g. reflexively examining our own assumptions) [ 75 ]. Our collection and analysis of qualitative data was informed by our own professional backgrounds (two general practitioners, one physical therapist, two non-clinicians).

In both MDTs and clinics, we took contemporaneous notes by hand and typed these up immediately afterwards.

Data management and analysis

Typed interview notes and field notes from clinics were collated in a set of Word documents, one for each clinic attended. They were analysed thematically [ 76 ] with attention to the literature on quality improvement and variation (see “ Background ”). Interim summaries were prepared on each clinic, setting out the narrative of how it had been established, its ethos and leadership, setting and staffing, population served and key links with other parts of the local healthcare ecosystem.

Minutes and field notes from the quality improvement collaborative meetings were summarized topic by topic, including initial data collected by the researchers-in-residence, improvement actions taken (or attempted) in that clinic, and any follow-up data shared. Progress or lack of it was interpreted in relation to the contextual case summary for that clinic.

Patient cases seen in clinic, and those discussed by MDTs, were summarized as brief case narratives in Word documents. Using the constant comparative method [ 77 ], we produced an initial synthesis of the clinical picture and principles of management based on the first 10 patient cases seen, and refined this as each additional case was added. Demographic and brief clinical and social details were also logged on Excel spreadsheets. When writing up clinical cases, we used the technique of composite case construction (in which we drew on several actual cases to generate a fictitious one, thereby protecting anonymity whilst preserving key empirical findings [ 78 ]); any names reported in this paper are pseudonyms.

Member checking

A summary was prepared for each clinic, including a narrative of the clinic’s own history and a summary of key quality issues raised across the ten clinics. These summaries included examples from real cases in our dataset. These were shared with the clinical research fellow and a senior clinician from the clinic, and amended in response to feedback. We also shared these summaries with representatives from the patient advisory group.

Overview of dataset

This study generated three complementary datasets. First, the video recordings, minutes, and field notes of 12 quality improvement collaborative meetings, along with the evidence summaries prepared for these meetings and clinic summaries (e.g. descriptions of current practice, audits) submitted by the clinical research fellows. This dataset illustrated wide variation in practice, and (in many topics) gaps or ambiguities in the evidence base.

Second, interviews with staff ( n  = 30) and patients ( n  = 29) from the clinics, along with ethnographic field notes (approximately 100 pages) from 13 in-person clinic visits (54 h), including notes on 50 patient consultations (40 face-to-face, 6 telephone, 4 video). This dataset illustrated the heterogeneity among the ten participating clinics.

Third, field notes (approximately 100 pages), including discussions on 244 clinical cases from the 45 MDT meetings (49 h) that we observed. This dataset revealed further similarities and contrasts among clinics in how patients were managed. In particular, it illustrated how, for the complex patients whose cases were presented at these meetings, teams made sense of, and planned for, each case through multidisciplinary dialogue. This dialogue typically began with one staff member presenting a detailed clinical history along with a narrative of how it had affected the patient’s life and what was at stake for them (e.g. job loss), after which professionals from various backgrounds (nursing, physical therapy, occupational therapy, psychology, dietetics, and different medical specialties) joined in a discussion about what to do.

The ten participating sites are summarized in Table  1 .

In the next two sections, we explore two issues—difficulty defining best practice and the heterogeneous nature of the clinics—that were key to explaining why quality, when pursued in a 10-site collaborative, proved elusive. We then briefly summarize patients’ accounts of their experience in the clinics and give three illustrative examples of the elusiveness of quality improvement using selected topics that were prioritized in our collaborative: outcome measures, investigation of palpitations and management of fatigue. In the final section of the results, we describe how MDT deliberations proved crucial for local quality improvement. Further detail on clinical priority topics will be presented in a separate paper.

“Best practice” in long covid: uncertainty and conflict

The study period (September 2021 to December 2023) corresponded with an exponential increase in published research on long covid. Despite this, the quality improvement collaborative found few unambiguous recommendations for practice. This gap between what the research literature offered and what clinical practice needed was partly ontological (relating what long covid is ). One major bone of contention between patients and clinicians (also evident in discussions with our patient advisory group), for example, was how far (and in whom) clinicians should look for and attempt to treat the various metabolic abnormalities that had been documented in laboratory research studies. The literature on this topic was extensive but conflicting [ 20 , 21 , 22 , 23 , 24 , 79 , 80 , 81 , 82 ]; it was heavy on biological detail but light on clinical application.

Patients were often aware of particular studies that appeared to offer plausible molecular or cellular explanations for symptom clusters along with a drug (often repurposed and off-label) whose mechanism of action appeared to be a good fit with the metabolic chain of causation. In one clinic, for example, we were shown an email exchange between a patient (not medically qualified) and a consultant, in which the patient asked them to reconsider their decision not to prescribe low-dose naltrexone, an opioid receptor antagonist with anti-inflammatory properties. The request included a copy of a peer-reviewed academic paper describing a small, uncontrolled pre-post study (i.e. a weak study design) in which this drug appeared to improve symptoms and functional performance in patients with long covid, as well as a mechanistic argument explaining why the patient felt this drug was a plausible choice in their own case.

This patient’s clinician, in common with most clinicians delivering front-line long covid services, considered that the evidence for such mechanism-based therapies was weak. Clinicians generally felt that this evidence, whilst promising, did not yet support routine measurement of clotting factors, antibodies, immune cells or other biomarkers or the prescription of mechanism-based therapies such as antivirals, anti-inflammatories or anticoagulants. Low-dose naltroxone, for example, is currently being tested in at least one randomized controlled trial (see National Clinical Trials Registry NCT05430152), which had not reported at the time of our observations.

Another challenge to defining best practice was the oft-repeated phrase that long covid is a “diagnosis by exclusion”, but the high prevalence of comorbidities meant that the “pure” long covid patient untainted by other potential explanations for their symptoms was a textbook ideal. In one MDT, for example, we observed a discussion about a patient who had had both swab-positive covid-19 and erythema migrans (a sign of Lyme disease) in the weeks before developing fatigue, yet local diagnostic criteria for each condition required the other to be excluded.

The logic of management in most participating clinics was pragmatic: prompt multidisciplinary assessment and treatment with an emphasis on obtaining a detailed clinical history (including premorbid health status), excluding serious complications (“red flags”), managing specific symptom clusters (for example, physical therapy for breathing pattern disorder), treating comorbidities (for example, anaemia, diabetes or menopause) and supporting whole-person rehabilitation [ 7 , 83 ]. The evidentiary questions raised in MDT discussions (which did not include patients) addressed the practicalities of the rehabilitation model (for example, whether cognitive therapy for neurocognitive complications is as effective when delivered online as it is when delivered in-person) rather than the molecular or cellular mechanisms of disease. For example, the question of whether patients with neurocognitive impairment should be tested for micro-clots or treated with anticoagulants never came up in the MDTs we observed, though we did visit a tertiary referral clinic (the tier 4 clinic in site H), whose lead clinician had a research interest in inflammatory coagulopathies and offered such tests to selected patients.

Because long covid typically produces dozens of symptoms that tend to be uniquely patterned in each patient, the uncertainties on which MDT discussions turned were rarely about general evidence of the kind that might be found in a guideline (e.g. how should fatigue be managed?). Rather they concerned particular case-based clinical decisions (e.g. how should this patient’s fatigue be managed, given the specifics of this case?). An example from our field notes illustrates this:

Physical therapist presents the case of a 39-year-old woman who works as a cleaner on an overnight ferry. Has had long covid for 2 years. Main symptoms are shortness of breath and possible anxiety attacks, especially when at work. She has had a course of physical therapy to teach diaphragmatic breathing but has found that focusing on her breathing makes her more anxious. Patient has to do a lot of bending in her job (e.g. cleaning toilets and under seats), which makes her dizzy, but Active Stand Test was normal. She also has very mild tricuspid incompetence [someone reads out a cardiology report—not hemodynamically significant].

Rehabilitation guidelines (e.g. WHO) recommend phased return to work (e.g. with reduced hours) and frequent breaks. “Tricky!” says someone. The job is intense and busy, and the patient can’t afford not to work. Discussion on whether all her symptoms can be attributed to tension and anxiety. Physical therapist who runs the breathing group says, “No, it’s long covid”, and describes severe initial covid-19 episode and results of serial chest X-rays which showed gradual clearing of ground glass shadows. Team discussion centers on how to negotiate reduced working hours in this particular job, given the overnight ferry shifts. --MDT discussion, Site D

This example raises important considerations about the nature of clinical knowledge in long covid. We return to it in the final section of the “ Results ” and in the “ Discussion ”.

Long covid clinics: a heterogeneous context for quality improvement

Most participating clinics had been established in mid-2020 to follow up patients who had been hospitalized (and perhaps ventilated) for severe acute covid-19. As mass vaccination reduced the severity of acute covid-19 for most people, the patient population in all clinics progressively shifted to include fewer “post-ICU [intensive care unit]” patients (in whom respiratory symptoms almost always dominated), and more people referred by their general practitioners or other secondary care specialties who had not been hospitalized for their acute covid-19 infection, and in whom fatigue, brain fog and palpitations were often the most troubling symptoms. Despite these similarities, the ten clinics had very different histories, geographical and material settings, staffing structures, patient pathways and case mix, as Table  1 illustrates. Below, we give more detail on three example sites.

Site C was established as a generalist “assessment-only” service by a general practitioner with an interest in infectious diseases. It is led jointly by that general practitioner and an occupational therapist, assisted by a wide range of other professionals including speech and language therapy, dietetics, clinical psychology and community-based physical therapy and occupational therapy. It has close links with a chronic fatigue service and a pain clinic that have been running in the locality for over 20 years. The clinic, which is entirely virtual (staff consult either from home or from a small side office in the community trust building), is physically located in a low-rise building on the industrial outskirts of a large town, sharing office space with various community-based health and social care services. Following a 1-h telephone consultation by one of the clinical leads, each patient is discussed at the MDT and then either discharged back to their general practitioner with a detailed management plan or referred on to one of the specialist services. This arrangement evolved to address a particular problem in this locality—that many patients with long covid were being referred by their general practitioner to multiple specialties (e.g. respiratory, neurology, fatigue), leading to a fragmented patient experience, unnecessary specialist assessments and wasteful duplication. The generalist assessment by telephone is oriented to documenting what is often a complex illness narrative (including pre-existing physical and mental comorbidities) and working with the patient to prioritize which symptoms or problems to pursue in which order.

Site E, in a well-regarded inner-city teaching hospital, had been set up in 2020 by a respiratory physician. Its initial ethos and rationale had been “respiratory follow-up”, with strong emphasis on monitoring lung damage via repeated imaging and lung function tests and in ensuring that patients received specialist physical therapy to “re-learn” efficient breathing techniques. Over time, this site has tried to accommodate a more multi-system assessment, with the introduction of a consultant-led infectious disease clinic for patients without a dominant respiratory component, reflecting the shift towards a more fatigue-predominant case mix. At the time of our fieldwork, each patient was seen in turn by a physician, psychologist, occupational therapist and respiratory physical therapist (half an hour each) before all four staff reconvened in a face-to-face MDT meeting to form a plan for each patient. But whilst a wide range of patients with diverse symptoms were discussed at these meetings, there remained a strong focus on respiratory pathology (e.g. tracking improvements in lung function and ensuring that coexisting asthma was optimally controlled).

Site F, one of the first long covid clinics in UK, was set up by a rehabilitation consultant who had been drafted to work on the ICU during the first wave of covid-19 in early 2020. He had a longstanding research interest in whole-patient rehabilitation, especially the assessment and management of chronic fatigue and pain. From the outset, clinic F was more oriented to rehabilitation, including vocational rehabilitation to help patients return to work. There was less emphasis on monitoring lung function or pursuing respiratory comorbidities. At the time of our fieldwork, clinic F offered both a community-based service (“tier 2”) led by an occupational therapist, supported by a respiratory physical therapist and psychologist, and a hospital-based service (“tier 3”) led by the rehabilitation consultant, supported by a wider MDT. Staff in both tiers emphasized that each patient needs a full physical and mental assessment and help to set and work towards achievable goals, whilst staying within safe limits so as to avoid post-exertional symptom exacerbation. Because of the research interest of the lead physician, clinic F adapted well to the growing numbers of patients with fatigue and quickly set up research studies on this cohort [ 84 ].

Details of the other seven sites are shown in Table  1 . Broadly speaking, sites B, E, G and H aligned with the “respiratory follow-up” model and sites F and I aligned with the “rehabilitation” model. Sites A and J had a high-volume, multi-tiered service whose community tier aligned with the “holistic GP assessment” model (site C above) and which also offered a hospital-based, rehabilitation-focused tier. The small service in Scotland (site D) had evolved from an initial respiratory focus to become part of the infectious diseases (ME/CFS) service; Lyme disease (another infectious disease whose sequelae include chronic fatigue) was also prevalent in this region.

The patient experience

Whilst the 10 participating clinics were very diverse in staffing, ethos and patient flows, the 29 patient interviews described remarkably consistent clinic experiences. Almost all identified the biggest problem to be the extended wait of several months before they were seen and the limited awareness (when initially referred) of what long covid clinics could provide. Some talked of how they cried with relief when they finally received an appointment. When the quality improvement collaborative was initially established, waiting times and bottlenecks were patients’ the top priority for quality improvement, and this ranking was shared by clinic staff, who were very aware of how much delays and uncertainties in assessment and treatment compounded patients’ suffering. This issue resolved to a large extent over the study period in all clinics as the referral backlog cleared and the incidence of new cases of long covid fell [ 85 ]; it will be covered in more detail in a separate publication.

Most patients in our sample were satisfied with the care they received when they were finally seen in clinic, especially how they finally felt “heard” after a clinician took a full history. They were relieved to receive affirmation of their experience, a diagnosis of what was wrong and reassurance that they were believed. They were grateful for the input of different members of the multidisciplinary teams and commented on the attentiveness, compassion and skill of allied professionals in particular (“she was wonderful, she got me breathing again”—patient BIR145 talking about a physical therapist). One or two patient participants expressed confusion about who exactly they had seen and what advice they had been given, and some did not realize that a telephone assessment had been an actual clinical consultation. A minority expressed disappointment that an expected investigation had not been ordered (one commented that they had not had any blood tests at all). Several had assumed that the help and advice from the long covid clinic would continue to be offered until they were better and were disappointed that they had been discharged after completing the various courses on offer (since their clinic had been set up as an “assessment only” service).

In the next sections, we give examples of topics raised in the quality improvement collaborative and how they were addressed.

Example quality topic 1: Outcome measures

The first topic considered by the quality improvement collaborative was how (that is, using which measures and metrics) to assess and monitor patients with long covid. In the absence of a validated biomarker, various symptom scores and quality of life scales—both generic and disease-specific—were mooted. Site F had already developed and validated a patient-reported outcome measure (PROM), the C19-YRS (Covid-19 Yorkshire Rehabilitation Scale) and used it for both research and clinical purposes [ 86 ]. It was quickly agreed that, for the purposes of generating comparative research findings across the ten clinics, the C19-YRS should be used at all sites and completed by patients three-monthly. A commercial partner produced an electronic version of this instrument and an app for patient smartphones. The quality improvement collaborative also agreed that patients should be asked to complete the EUROQOL EQ5D, a widely used generic health-related quality of life scale [ 87 ], in order to facilitate comparisons between long covid and other chronic conditions.

In retrospect, the discussions which led to the unopposed adoption of these two measures as a “quality” initiative in clinical care were somewhat aspirational. A review of progress at a subsequent quality improvement meeting revealed considerable variation among clinics, with a wide variety of measures used in different clinics to different degrees. Reasons for this variation were multiple. First, although our patient advisory group were keen that we should gather as much data as possible on the patient experience of this new condition, many clinic patients found the long questionnaires exhausting to complete due to cognitive impairment and fatigue. In addition, whilst patients were keen to answer questions on symptoms that troubled them, many had limited patience to fill out repeated surveys on symptoms that did not trouble them (“it almost felt as if I’ve not got long covid because I didn’t feel like I fit the criteria as they were laying it out”—patient SAL001). Staff assisted patients in completing the measures when needed, but this was time-consuming (up to 45 min per instrument) and burdensome for both staff and patients. In clinics where a high proportion of patients required assistance, staff time was the rate-limiting factor for how many instruments got completed. For some patients, one short instrument was the most that could be asked of them, and the clinician made a judgement on which one would be in their best interests on the day.

The second reason for variation was that the clinical diagnosis and management of particular features, complications and comorbidities of long covid required more nuance than was provided by these relatively generic instruments, and the level of detail sought varied with the specialist interest of the clinic (and the clinician). The modified C19-YRS [ 88 ], for example, contained 19 items, of which one asked about sleep quality. But if a patient had sleep difficulties, many clinicians felt that these needed to be documented in more detail—for example using the 8-item Epworth Sleepiness Scale, originally developed for conditions such as narcolepsy and obstructive sleep apnea [ 89 ]. The “Epworth score” was essential currency for referrals to some but not all specialist sleep services. Similarly, the C19-YRS had three items relating to anxiety, depression and post-traumatic stress disorder, but in clinics where there was a strong focus on mental health (e.g. when there was a resident psychologist), patients were usually invited to complete more specific tools (e.g. the Patient Health Questionnaire 9 [ 90 ], a 9-item questionnaire originally designed to assess severity of depression).

The third reason for variation was custom and practice. Ethnographic visits revealed that paper copies of certain instruments were routinely stacked on clinicians’ desks in outpatient departments and also (in some cases) handed out by administrative staff in waiting areas so that patients could complete them before seeing the clinician. These familiar clinic artefacts tended to be short (one-page) instruments that had a long tradition of use in clinical practice. They were not always fit for purpose. For example, the Nijmegen questionnaire was developed in the 1980s to assess hyperventilation; it was validated against a longer, “gold standard” instrument for that condition [ 91 ]. It subsequently became popular in respiratory clinics to diagnose or exclude breathing pattern disorder (a condition in which the normal physiological pattern of breathing becomes replaced with less efficient, shallower breathing [ 92 ]), so much so that the researchers who developed the instrument published a paper to warn fellow researchers that it had not been validated for this purpose [ 93 ]. Whilst a validated 17-item instrument for breathing pattern disorder (the Self-Evaluation of Breathing Questionnaire [ 94 ]) does exist, it is not in widespread clinical use. Most clinics in LOCOMOTION used Nijmegen either on all patients (e.g. as part of a comprehensive initial assessment, especially if the service had begun as a respiratory follow-up clinic) or when breathing pattern disorder was suspected.

In sum, the use of outcome measures in long covid clinics was a compromise between standardization and contingency. On the one hand, all clinics accepted the need to use “validated” instruments consistently. On the other hand, there were sometimes good reasons why they deviated from agreed practice, including mismatch between the clinic’s priorities as a research site, its priorities as a clinical service, and the particular clinical needs of a patient; the clinic’s—and the clinician’s—specialist focus; and long-held traditions of using particular instruments with which staff and patients were familiar.

Example quality topic 2: Postural orthostatic tachycardia syndrome (POTS)

Palpitations (common in long covid) and postural orthostatic tachycardia syndrome (POTS, a disproportionate acceleration in heart rate on standing, the assumed cause of palpitations in many long covid patients) was the top priority for quality improvement identified by our patient advisory group. Reflecting discussions and evidence (of various kinds) shared in online patient communities, the group were confident that POTS is common in long covid patients and that many cases remain undetected (perhaps misdiagnosed as anxiety). Their request that all long covid patients should be “screened” for POTS prompted a search for, and synthesis of, evidence (which we published in the BMJ [ 95 ]). In sum, that evidence was sparse and contested, but, combined with standard practice in specialist clinics, broadly supported the judicious use of the NASA Lean Test [ 96 ]. This test involves repeated measurements of pulse and blood pressure with the patient first lying and then standing (with shoulders resting against a wall).

The patient advisory group’s request that the NASA Lean Test should be conducted on all patients met with mixed responses from the clinics. In site F, the lead physician had an interest in autonomic dysfunction in chronic fatigue and was keen; he had already published a paper on how to adapt the NASA Lean Test for self-assessment at home [ 97 ]. Several other sites were initially opposed. Staff at site E, for example, offered various arguments:

The test is time-consuming, labor-intensive, and takes up space in the clinic which has an opportunity cost in terms of other potential uses;

The test is unvalidated and potentially misleading (there is a high incidence of both false negative and false positive results);

There is no proven treatment for POTS, so there is no point in testing for it;

It is a specialist test for a specialist condition, so it should be done in a specialist clinic where its benefits and limitations are better understood;

Objective testing does not change clinical management since what we treat is the patient’s symptoms (e.g. by a pragmatic trial of lifestyle measures and medication);

People with symptoms suggestive of dysautonomia have already been “triaged out” of this clinic (that is, identified in the initial telephone consultation and referred directly to neurology or cardiology);

POTS is a manifestation of the systemic nature of long covid; it does not need specific treatment but will improve spontaneously as the patient goes through standard interventions such as active pacing, respiratory physical therapy and sleep hygiene;

Testing everyone, even when asymptomatic, runs counter to the ethos of rehabilitation, which is to “de-medicalize” patients so as to better orient them to their recovery journey.

When clinics were invited to implement the NASA Lean Test on a consecutive sample of patients to resolve a dispute about the incidence of POTS (from “we’ve only seen a handful of people with it since the clinic began” to “POTS is common and often missed”), all but one site agreed to participate. The tertiary POTS centre linked to site H was already running the NASA Lean Test as standard on all patients. Site C, which operated entirely virtually, passed the work to the referring general practitioner by making this test a precondition for seeing the patient; site D, which was largely virtual, sent instructions for patients to self-administer the test at home.

The NASA Lean Test study has been published separately [ 98 ]. In sum, of 277 consecutive patients tested across the eight clinics, 20 (7%) had a positive NASA Lean Test for POTS and a further 28 (10%) a borderline result. Six of 20 patients who met the criteria for POTS on testing had no prior history of orthostatic intolerance. The question of whether this test should be used to “screen” all patients was not answered definitively. But the experience of participating in the study persuaded some sceptics that postural changes in heart rate could be severe in some long covid patients, did not appear to be fully explained by their previously held theories (e.g. “functional”, anxiety, deconditioning), and had likely been missed in some patients. The outcome of this particular quality improvement cycle was thus not a wholescale change in practice (for which the evidence base was weak) but a more subtle increase in clinical awareness, a greater willingness to consider testing for POTS and a greater commitment to contribute to research into this contested condition.

More generally, the POTS audit prompted some clinicians to recognize the value of quality improvement in novel clinical areas. One physician who had initially commented that POTS was not seen in their clinic, for example, reflected:

“ Our clinic population is changing. […] Overall there’s far fewer post-ICU patients with ECMO [extra-corporeal membrane oxygenation] issues and far more long covid from the community, and this is the bit our clinic isn’t doing so well on. We’re doing great on breathing pattern disorder; neuro[logists] are helping us with the brain fogs; our fatigue and occupational advice is ok but some of the dysautonomia symptoms that are more prevalent in the people who were not hospitalized – that’s where we need to improve .” -Respiratory physician, site G (from field visit 6.6.23)

Example quality topic 3: Management of fatigue

Fatigue was the commonest symptom overall and a high priority among both patients and clinicians for quality improvement. It often coexisted with the cluster of neurocognitive symptoms known as brain fog, with both conditions relapsing and remitting in step. Clinicians were keen to systematize fatigue management using a familiar clinical framework oriented around documenting a full clinical history, identifying associated symptoms, excluding or exploring comorbidities and alternative explanations (e.g. poor sleep patterns, depression, menopause, deconditioning), assessing how fatigue affects physical and mental function, implementing a program of physical and cognitive therapy that was sensitive to the patient’s condition and confidence level, and monitoring progress using validated patient-reported outcome measures and symptom diaries.

The underpinning logic of this approach, which broadly reflected World Health Organization guidance [ 99 ], was that fatigue and linked cognitive impairment could be a manifestation of many—perhaps interacting—conditions but that a whole-patient (body and mind) rehabilitation program was the cornerstone of management in most cases. Discussion in the quality improvement collaborative focused on issues such as whether fatigue was so severe that it produced safety concerns (e.g. in a person’s job or with childcare), the pros and cons of particular online courses such as yoga, relaxation and mindfulness (many were viewed positively, though the evidence base was considered weak), and the extent to which respiratory physical therapy had a crossover impact on fatigue (systematic reviews suggested that it may do, but these reviews also cautioned that primary studies were sparse, methodologically flawed, and heterogeneous [ 100 , 101 ]). They also debated the strengths and limitations of different fatigue-specific outcome measures, each of which had been developed and validated in a different condition, with varying emphasis on cognitive fatigue, physical fatigue, effect on daily life, and motivation. These instruments included the Modified Fatigue Impact Scale; Fatigue Severity Scale [ 102 ]; Fatigue Assessment Scale; Functional Assessment Chronic Illness Therapy—Fatigue (FACIT-F) [ 103 ]; Work and Social Adjustment Scale [ 104 ]; Chalder Fatigue Scale [ 105 ]; Visual Analogue Scale—Fatigue [ 106 ]; and the EQ5D [ 87 ]. In one clinic (site F), three of these scales were used in combination for reasons discussed below.

Some clinicians advocated melatonin or nutritional supplements (such as vitamin D or folic acid) for fatigue on the grounds that many patients found them helpful and formal placebo-controlled trials were unlikely ever to be conducted. But neurostimulants used in other fatigue-predominant conditions (e.g. brain injury, stroke), which also lacked clinical trial evidence in long covid, were viewed as inappropriate in most patients because of lack of evidence of clear benefit and hypothetical risk of harm (e.g. adverse drug reactions, polypharmacy).

Whilst the patient advisory group were broadly supportive of a whole-patient rehabilitative approach to fatigue, their primary concern was fatiguability , especially post-exertional symptom exacerbation (PESE, also known as “crashes”). In these, the patient becomes profoundly fatigued some hours or days after physical or mental exertion, and this state can last for days or even weeks [ 107 ]. Patients viewed PESE as a “red flag” symptom which they felt clinicians often missed and sometimes caused. They wanted the quality improvement effort to focus on ensuring that all clinicians were aware of the risks of PESE and acted accordingly. A discussion among patients and clinicians at a quality improvement collaborative meeting raised a new research hypothesis—that reducing the number of repeated episodes of PESE may improve the natural history of long covid.

These tensions around fatigue management played out differently in different clinics. In site C (the GP-led virtual clinic run from a community hub), fatigue was viewed as one manifestation of a whole-patient condition. The lead general practitioner used the metaphor of untangling a skein of wool: “you have to find the end and then gently pull it”. The underlying problem in a fatigued patient, for example, might be an undiagnosed physical condition such as anaemia, disturbed sleep, or inadequate pacing. These required (respectively) the chronic fatigue service (comprising an occupational therapist and specialist psychologist and oriented mainly to teaching the techniques of goal-setting and pacing), a “tiredness” work-up (e.g. to exclude anaemia or menopause), investigation of poor sleep (which, not uncommonly, was due to obstructive sleep apnea), and exploration of mental health issues.

In site G (a hospital clinic which had evolved from a respiratory service), patients with fatigue went through a fatigue management program led by the occupational therapist with emphasis on pacing, energy conservation, avoidance of PESE and sleep hygiene. Those without ongoing respiratory symptoms were often discharged back to their general practitioner once they had completed this; there was no consultant follow-up of unresolved fatigue.

In site F (a rehabilitation clinic which had a longstanding interest in chronic fatigue even before the pandemic), active interdisciplinary management of fatigue was commenced at or near the patient’s first visit, on the grounds that the earlier this began, the more successful it would be. In this clinic, patients were offered a more intensive package: a similar occupational therapy-led fatigue course as those in site G, plus input from a dietician to advise on regular balanced meals and caffeine avoidance and a group-based facilitated peer support program which centred on fatigue management. The dietician spoke enthusiastically about how improving diet in longstanding long covid patients often improved fatigue (e.g. because they had often lost muscle mass and tended to snack on convenience food rather than make meals from scratch), though she agreed there was no evidence base from trials to support this approach.

Pursuing local quality improvement through MDTs

Whilst some long covid patients had “textbook” symptoms and clinical findings, many cases were unique and some were fiendishly complex. One clinician commented that, somewhat paradoxically, “easy cases” were often the post-ICU follow-ups who had resolving chest complications; they tended to do well with a course of respiratory physical therapy and a return-to-work program. Such cases were rarely brought to MDT meetings. “Difficult cases” were patients who had not been hospitalized for their acute illness but presented with a months- or years-long history of multiple symptoms with fatigue typically predominant. Each one was different, as the following example (some details of which have been fictionalized to protect anonymity) illustrates.

The MDT is discussing Mrs Fermah, a 65-year-old homemaker who had covid-19 a year ago. She has had multiple symptoms since, including fluctuating fatigue, brain fog, breathlessness, retrosternal chest pain of burning character, dry cough, croaky voice, intermittent rashes (sometimes on eating), lips going blue, ankle swelling, orthopnoea, dizziness with the room spinning which can be triggered by stress, low back pain, aches and pains in the arms and legs and pins and needles in the fingertips, loss of taste and smell, palpitations and dizziness (unclear if postural, but clear association with nausea), headaches on waking, and dry mouth. She is somewhat overweight (body mass index 29) and admits to low mood. Functionally, she is mostly confined to the house and can no longer manage the stairs so has begun to sleep downstairs. She has stumbled once or twice but not fallen. Her social life has ceased and she rarely has the energy to see her grandchildren. Her 70-year-old husband is retired and generally supportive, though he spends most evenings at his club. Comorbidities include glaucoma which is well controlled and overseen by an ophthalmologist, mild club foot (congenital) and stage 1 breast cancer 20 years ago. Various tests, including a chest X-ray, resting and exercise oximetry and a blood panel, were normal except for borderline vitamin D level. Her breathing questionnaire score suggests she does not have breathing pattern disorder. ECG showed first-degree atrioventricular block and left axis deviation. No clinician has witnessed the blue lips. Her current treatment is online group respiratory physical therapy; a home visit is being arranged to assess her climbing stairs. She has declined a psychologist assessment. The consultant asks the nurse who assessed her: “Did you get a feel if this is a POTS-type dizziness or an ENT-type?” She sighs. “Honestly it was hard to tell, bless her.”—Site A MDT

This patient’s debilitating symptoms and functional impairments could all be due to long covid, yet “evidence-based” guidance for how to manage her complex suffering does not exist and likely never will exist. The question of which (if any) additional blood or imaging tests to do, in what order of priority, and what interventions to offer the patient will not be definitively answered by consulting clinical trials involving hundreds of patients, since (even if these existed) the decision involves weighing this patient’s history and the multiple factors and uncertainties that are relevant in her case. The knowledge that will help the MDT provide quality care to Mrs Fermah is case-based knowledge—accumulated clinical experience and wisdom from managing and deliberating on multiple similar cases. We consider case-based knowledge further in the “ Discussion ”.

Summary of key findings

This study has shown that a quality improvement collaborative of UK long covid clinics made some progress towards standardizing assessment and management in some topics, but some variation remained. This could be explained in part by the fact that different clinics had different histories and path dependencies, occupied a different place in the local healthcare ecosystem, served different populations, were differently staffed, and had different clinical interests. Our patient advisory group and clinicians in the quality improvement collaborative broadly prioritized the same topics for improvement but interpreted them somewhat differently. “Quality” long covid care had multiple dimensions, relating to (among other things) service set-up and accessibility, clinical provision appropriate to the patient’s need (including options for referral to other services locally), the human qualities of clinical and support staff, how knowledge was distributed across (and accessible within) the system, and the accumulated collective wisdom of local MDTs in dealing with complex cases (including multiple kinds of specialist expertise as well as relational knowledge of what was at stake for the patient). Whilst both staff and patients were keen to contribute to the quality improvement effort, the burden of measurement was evident: multiple outcome measures, used repeatedly, were resource-intensive for staff and exhausting for patients.

Strengths and limitations of this study

To our knowledge, we are the first to report both a quality improvement collaborative and an in-depth qualitative study of clinical work in long covid. Key strengths of this work include the diverse sampling frame (with sites from three UK jurisdictions and serving widely differing geographies and demographics); the use of documents, interviews and reflexive interpretive ethnography to produce meaningful accounts of how clinics emerged and how they were currently organized; the use of philosophical concepts to analyse data on how MDTs produced quality care on a patient-by-patient basis; and the close involvement of patient co-researchers and coauthors during the research and writing up.

Limitations of the study include its exclusive UK focus (the external validity of findings to other healthcare systems is unknown); the self-selecting nature of participants in a quality improvement collaborative (our patient advisory group suggested that the MDTs observed in this study may have represented the higher end of a quality spectrum, hence would be more likely than other MDTs to adhere to guidelines); and the particular perspective brought by the researchers (two GPs, a physical therapist and one non-clinical person) in ethnographic observations. Hospital specialists or organizational scholars, for example, may have noticed different things or framed what they observed differently.

Explaining variation in long covid care

Sutherland and Levesque’s framework mentioned in the “ Background ” section does not explain much of the variation found in our study [ 70 ]. In terms of capacity, at the time of this study most participating clinics benefited from ring-fenced resources. In terms of evidence, guidelines existed and were not greatly contested, but as illustrated by the case of Mrs Fermah above, many patients were exceptions to the guideline because of complex symptomatology and relevant comorbidities. In terms of agency, clinicians in most clinics were passionately engaged with long covid (they were pioneers who had set up their local clinic and successfully bid for national ring-fenced resources) and were generally keen to support patient choice (though not if the patient requested tests which were unavailable or deemed not indicated).

Astma et al.’s list of factors that may explain variation in practice (see “ Background ”) includes several that may be relevant to long covid, especially that the definition of appropriate care in this condition remains somewhat contested. But lack of opportunity to discuss cases was not a problem in the clinics in our sample. On the contrary, MDT meetings in each locality gave clinicians multiple opportunities to discuss cases with colleagues and reflect collectively on whether and how to apply particular guidelines.

The key problem was not that clinicians disputed the guidelines for managing long covid or were unaware of them; it was that the guidelines were not self-interpreting . Rather, MDTs had to deliberate on the balance of benefits and harms in different aspects of individual cases. In patients whose symptoms suggested a possible diagnosis of POTS (or who suspected themselves of having POTS), for example, these deliberations were sometimes lengthy and nuanced. Should a test result that is not technically in the abnormal range but close to it be treated as diagnostic, given that symptoms point to this diagnosis? If not, should the patient be told that the test excludes POTS or that it is equivocal? If a cardiology opinion has stated firmly that the patient does not have POTS but the cardiologist is not known for their interest in this condition, should a second specialist opinion be sought? If the gold standard “tilt test” [ 108 ] for POTS (usually available only in tertiary centres) is not available locally, does this patient merit a costly out-of-locality referral? Should the patient’s request for a trial of off-label medication, reflecting discussions in an online support group, be honoured? These are the kinds of questions on which MDTs deliberated at length.

The fact that many cases required extensive deliberation does not necessarily justify variation in practice among clinics. But taking into account the clinics’ very different histories, set-up, and local referral pathways, the variation begins to make sense. A patient who is being assessed in a clinic that functions as a specialist chronic fatigue centre and attracts referrals which reflect this interest (e.g. site F in our sample) will receive different management advice from one that functions as a telephone-only generalist assessment centre and refers on to other specialties (site C in our sample). The wide variation in case mix, coupled with the fact that a different proportion of these cases were highly complex in each clinic (and in different ways), suggests that variation in practice may reflect appropriate rather than inappropriate care.

Our patient advisory group affirmed that many of the findings reported here resonated with their own experience, but they raised several concerns. These included questions about patient groups who may have been missed in our sample because they were rarely discussed in MDTs. The decision to take a case to MDT discussion is taken largely by a clinician, and there was evidence from online support groups that some patients’ requests for their case to be taken to an MDT had been declined (though not, to our knowledge, in the clinics participating in the LOCOMOTION study).

We began this study by asking “what is quality in long covid care?”. We initially assumed that this question referred to a generalizable evidence base, which we felt we could identify, and we believed that we could then determine whether long covid clinics were following the evidence base through conventional audits of structure, process, and outcome. In retrospect, these assumptions were somewhat naïve. On the basis of our findings, we suggest that a better (and more individualized) research question might be “to what extent does each patient with long covid receive evidence-based care appropriate to their needs?”. This question would require individual case review on a sample of cases, tracking each patient longitudinally including cross-referrals, and also interviewing the patient.

Nomothetic versus idiographic knowledge

In a series of lectures first delivered in the 1950s and recently republished [ 109 ], psychiatrist Dr Maurice O’Connor Drury drew on the later philosophy of his friend and mentor Ludwig Wittgenstein to challenge what he felt was a concerning trend: that the nomothetic (generalizable, abstract) knowledge from randomized controlled trials (RCTs) was coming to over-ride the idiographic (personal, situated) knowledge about particular patients. Based on Wittgenstein’s writings on the importance of the particular, Drury predicted—presciently—that if implemented uncritically, RCTs would result in worse, not better, care for patients, since it would go hand-in-hand with a downgrading of experience, intuition, subjective judgement, personal reflection, and collective deliberation.

Much conventional quality improvement methodology is built on an assumption that nomothetic knowledge (for example, findings from RCTs and systematic reviews) is a higher form of knowing than idiographic knowledge. But idiographic, case-based reasoning—despite its position at the very bottom of evidence-based medicine’s hierarchy of evidence [ 110 ]—is a legitimate and important element of medical practice. Bioethicist Kathryn Montgomery, drawing on Aristotle’s notion of praxis , considers clinical practice to be an example of case-based reasoning [ 111 ]. Medicine is governed not by hard and fast laws but by competing maxims or rules of thumb ; the essence of judgement is deciding which (if any) rule should be applied in a particular circumstance. Clinical judgement incorporates science (especially the results of well-conducted research) and makes use of available tools and technologies (including guidelines and decision-support algorithms that incorporate research findings). But rather than being determined solely by these elements, clinical judgement is guided both by the scientific evidence and by the practical and ethical question “what is it best to do, for this individual, given these circumstances?”.

In this study, we observed clinical management of, and MDT deliberations on, hundreds of clinical cases. In the more straightforward ones (for example, recovering pneumonitis), guideline-driven care was not difficult to implement and such cases were rarely brought to the MDT. But cases like Mrs Fermah (see last section of “ Results ”) required much discussion on which aspects of which guideline were in the patient’s best interests to bring into play at any particular stage in their illness journey.

Conclusions

One systematic review on quality improvement collaboratives concluded that “ [those] reporting success generally addressed relatively straightforward aspects of care, had a strong evidence base and noted a clear evidence-practice gap in an accepted clinical pathway or guideline” (page 226) [ 60 ]. The findings from this study suggest that to the extent that such collaboratives address clinical cases that are not straightforward, conventional quality improvement methods may be less useful and even counterproductive.

The question “what is quality in long covid care?” is partly a philosophical one. Our findings support an approach that recognizes and values idiographic knowledge —including establishing and protecting a safe and supportive space for deliberation on individual cases to occur and to value and draw upon the collective learning that occurs in these spaces. It is through such deliberation that evidence-based guidelines can be appropriately interpreted and applied to the unique needs and circumstances of individual patients. We suggest that Drury’s warning about the limitations of nomothetic knowledge should prompt a reassessment of policies that rely too heavily on such knowledge, resulting in one-size-fits-all protocols. We also cautiously hypothesize that the need to centre the quality improvement effort on idiographic rather than nomothetic knowledge is unlikely to be unique to long covid. Indeed, such an approach may be particularly important in any condition that is complex, unpredictable, variable in presentation and clinical course, and associated with comorbidities.

Availability of data and materials

Selected qualitative data (ensuring no identifiable information) will be made available to formal research teams on reasonable request to Professor Greenhalgh at the University of Oxford, on condition that they have research ethics approval and relevant expertise. The quantitative data on NASA Lean Test have been published in full in a separate paper [ 98 ].

Abbreviations

Chronic fatigue syndrome

Intensive care unit

Jenny Ceolta-Smith

Julie Darbyshire

LOng COvid Multidisciplinary consortium Optimising Treatments and services across the NHS

Multidisciplinary team

Myalgic encephalomyelitis

Middle East Respiratory Syndrome

National Aeronautics and Space Association

Occupational therapy/ist

Post-exertional symptom exacerbation

Postural orthostatic tachycardia syndrome

Speech and language therapy

Severe Acute Respiratory Syndrome

Trisha Greenhalgh

United Kingdom

United States

World Health Organization

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Acknowledgements

We are grateful to clinic staff for allowing us to study their work and to patients for allowing us to sit in on their consultations. We also thank the funder of LOCOMOTION (National Institute for Health Research) and the patient advisory group for lived experience input.

This research is supported by National Institute for Health Research (NIHR) Long Covid Research Scheme grant (Ref COV-LT-0016).

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Trisha Greenhalgh, Julie L. Darbyshire & Emma Ladds

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Contributions

TG conceptualized the overall study, led the empirical work, supported the quality improvement meetings, conducted the ethnographic visits, led the data analysis, developed the theorization and wrote the first draft of the paper. JLD organized and led the quality improvement meetings, supported site-based researchers to collect and analyse data on their clinic, collated and summarized data on quality topics, and liaised with the patient advisory group. CL conceptualized and led the quality topic on POTS, including exploring reasons for some clinics’ reluctance to conduct testing and collating and analysing the NASA Lean Test data across all sites. EL assisted with ethnographic visits, data analysis, and theorization. JCS contributed lived experience of long covid and also clinical experience as an occupational therapist; she liaised with the wider patient advisory group, whose independent (patient-led) audit of long covid clinics informed the quality improvement prioritization exercise. All authors provided extensive feedback on drafts and contributed to discussions and refinements. All authors read and approved the final manuscript.

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Correspondence to Trisha Greenhalgh .

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Ethics approval and consent to participate.

LOng COvid Multidisciplinary consortium Optimising Treatments and servIces acrOss the NHS study is sponsored by the University of Leeds and approved by Yorkshire & The Humber—Bradford Leeds Research Ethics Committee (ref: 21/YH/0276) and subsequent amendments.

Patient participants in clinic were approached by the clinician (without the researcher present) and gave verbal informed consent for a clinically qualified researcher to observe the consultation. If they consented, the researcher was then invited to sit in. A written record was made in field notes of this verbal consent. It was impractical to seek consent from patients whose cases were discussed (usually with very brief clinical details) in online MDTs. Therefore, clinical case examples from MDTs presented in the paper are fictionalized cases constructed from multiple real cases and with key clinical details changed (for example, comorbidities were replaced with different conditions which would produce similar symptoms). All fictionalized cases were checked by our patient advisory group to check that they were plausible to lived experience experts.

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No direct patient cases are reported in this manuscript. For details of how the fictionalized cases were constructed and validated, see “Consent to participate” above.

Competing interests

TG was a member of the UK National Long Covid Task Force 2021–2023 and on the Oversight Group for the NICE Guideline on Long Covid 2021–2022. She is a member of Independent SAGE.

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Greenhalgh, T., Darbyshire, J.L., Lee, C. et al. What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography. BMC Med 22 , 159 (2024). https://doi.org/10.1186/s12916-024-03371-6

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A Practical Guide to Writing Quantitative and Qualitative Research Questions and Hypotheses in Scholarly Articles

Edward barroga.

1 Department of General Education, Graduate School of Nursing Science, St. Luke’s International University, Tokyo, Japan.

Glafera Janet Matanguihan

2 Department of Biological Sciences, Messiah University, Mechanicsburg, PA, USA.

The development of research questions and the subsequent hypotheses are prerequisites to defining the main research purpose and specific objectives of a study. Consequently, these objectives determine the study design and research outcome. The development of research questions is a process based on knowledge of current trends, cutting-edge studies, and technological advances in the research field. Excellent research questions are focused and require a comprehensive literature search and in-depth understanding of the problem being investigated. Initially, research questions may be written as descriptive questions which could be developed into inferential questions. These questions must be specific and concise to provide a clear foundation for developing hypotheses. Hypotheses are more formal predictions about the research outcomes. These specify the possible results that may or may not be expected regarding the relationship between groups. Thus, research questions and hypotheses clarify the main purpose and specific objectives of the study, which in turn dictate the design of the study, its direction, and outcome. Studies developed from good research questions and hypotheses will have trustworthy outcomes with wide-ranging social and health implications.

INTRODUCTION

Scientific research is usually initiated by posing evidenced-based research questions which are then explicitly restated as hypotheses. 1 , 2 The hypotheses provide directions to guide the study, solutions, explanations, and expected results. 3 , 4 Both research questions and hypotheses are essentially formulated based on conventional theories and real-world processes, which allow the inception of novel studies and the ethical testing of ideas. 5 , 6

It is crucial to have knowledge of both quantitative and qualitative research 2 as both types of research involve writing research questions and hypotheses. 7 However, these crucial elements of research are sometimes overlooked; if not overlooked, then framed without the forethought and meticulous attention it needs. Planning and careful consideration are needed when developing quantitative or qualitative research, particularly when conceptualizing research questions and hypotheses. 4

There is a continuing need to support researchers in the creation of innovative research questions and hypotheses, as well as for journal articles that carefully review these elements. 1 When research questions and hypotheses are not carefully thought of, unethical studies and poor outcomes usually ensue. Carefully formulated research questions and hypotheses define well-founded objectives, which in turn determine the appropriate design, course, and outcome of the study. This article then aims to discuss in detail the various aspects of crafting research questions and hypotheses, with the goal of guiding researchers as they develop their own. Examples from the authors and peer-reviewed scientific articles in the healthcare field are provided to illustrate key points.

DEFINITIONS AND RELATIONSHIP OF RESEARCH QUESTIONS AND HYPOTHESES

A research question is what a study aims to answer after data analysis and interpretation. The answer is written in length in the discussion section of the paper. Thus, the research question gives a preview of the different parts and variables of the study meant to address the problem posed in the research question. 1 An excellent research question clarifies the research writing while facilitating understanding of the research topic, objective, scope, and limitations of the study. 5

On the other hand, a research hypothesis is an educated statement of an expected outcome. This statement is based on background research and current knowledge. 8 , 9 The research hypothesis makes a specific prediction about a new phenomenon 10 or a formal statement on the expected relationship between an independent variable and a dependent variable. 3 , 11 It provides a tentative answer to the research question to be tested or explored. 4

Hypotheses employ reasoning to predict a theory-based outcome. 10 These can also be developed from theories by focusing on components of theories that have not yet been observed. 10 The validity of hypotheses is often based on the testability of the prediction made in a reproducible experiment. 8

Conversely, hypotheses can also be rephrased as research questions. Several hypotheses based on existing theories and knowledge may be needed to answer a research question. Developing ethical research questions and hypotheses creates a research design that has logical relationships among variables. These relationships serve as a solid foundation for the conduct of the study. 4 , 11 Haphazardly constructed research questions can result in poorly formulated hypotheses and improper study designs, leading to unreliable results. Thus, the formulations of relevant research questions and verifiable hypotheses are crucial when beginning research. 12

CHARACTERISTICS OF GOOD RESEARCH QUESTIONS AND HYPOTHESES

Excellent research questions are specific and focused. These integrate collective data and observations to confirm or refute the subsequent hypotheses. Well-constructed hypotheses are based on previous reports and verify the research context. These are realistic, in-depth, sufficiently complex, and reproducible. More importantly, these hypotheses can be addressed and tested. 13

There are several characteristics of well-developed hypotheses. Good hypotheses are 1) empirically testable 7 , 10 , 11 , 13 ; 2) backed by preliminary evidence 9 ; 3) testable by ethical research 7 , 9 ; 4) based on original ideas 9 ; 5) have evidenced-based logical reasoning 10 ; and 6) can be predicted. 11 Good hypotheses can infer ethical and positive implications, indicating the presence of a relationship or effect relevant to the research theme. 7 , 11 These are initially developed from a general theory and branch into specific hypotheses by deductive reasoning. In the absence of a theory to base the hypotheses, inductive reasoning based on specific observations or findings form more general hypotheses. 10

TYPES OF RESEARCH QUESTIONS AND HYPOTHESES

Research questions and hypotheses are developed according to the type of research, which can be broadly classified into quantitative and qualitative research. We provide a summary of the types of research questions and hypotheses under quantitative and qualitative research categories in Table 1 .

Research questions in quantitative research

In quantitative research, research questions inquire about the relationships among variables being investigated and are usually framed at the start of the study. These are precise and typically linked to the subject population, dependent and independent variables, and research design. 1 Research questions may also attempt to describe the behavior of a population in relation to one or more variables, or describe the characteristics of variables to be measured ( descriptive research questions ). 1 , 5 , 14 These questions may also aim to discover differences between groups within the context of an outcome variable ( comparative research questions ), 1 , 5 , 14 or elucidate trends and interactions among variables ( relationship research questions ). 1 , 5 We provide examples of descriptive, comparative, and relationship research questions in quantitative research in Table 2 .

Hypotheses in quantitative research

In quantitative research, hypotheses predict the expected relationships among variables. 15 Relationships among variables that can be predicted include 1) between a single dependent variable and a single independent variable ( simple hypothesis ) or 2) between two or more independent and dependent variables ( complex hypothesis ). 4 , 11 Hypotheses may also specify the expected direction to be followed and imply an intellectual commitment to a particular outcome ( directional hypothesis ) 4 . On the other hand, hypotheses may not predict the exact direction and are used in the absence of a theory, or when findings contradict previous studies ( non-directional hypothesis ). 4 In addition, hypotheses can 1) define interdependency between variables ( associative hypothesis ), 4 2) propose an effect on the dependent variable from manipulation of the independent variable ( causal hypothesis ), 4 3) state a negative relationship between two variables ( null hypothesis ), 4 , 11 , 15 4) replace the working hypothesis if rejected ( alternative hypothesis ), 15 explain the relationship of phenomena to possibly generate a theory ( working hypothesis ), 11 5) involve quantifiable variables that can be tested statistically ( statistical hypothesis ), 11 6) or express a relationship whose interlinks can be verified logically ( logical hypothesis ). 11 We provide examples of simple, complex, directional, non-directional, associative, causal, null, alternative, working, statistical, and logical hypotheses in quantitative research, as well as the definition of quantitative hypothesis-testing research in Table 3 .

Research questions in qualitative research

Unlike research questions in quantitative research, research questions in qualitative research are usually continuously reviewed and reformulated. The central question and associated subquestions are stated more than the hypotheses. 15 The central question broadly explores a complex set of factors surrounding the central phenomenon, aiming to present the varied perspectives of participants. 15

There are varied goals for which qualitative research questions are developed. These questions can function in several ways, such as to 1) identify and describe existing conditions ( contextual research question s); 2) describe a phenomenon ( descriptive research questions ); 3) assess the effectiveness of existing methods, protocols, theories, or procedures ( evaluation research questions ); 4) examine a phenomenon or analyze the reasons or relationships between subjects or phenomena ( explanatory research questions ); or 5) focus on unknown aspects of a particular topic ( exploratory research questions ). 5 In addition, some qualitative research questions provide new ideas for the development of theories and actions ( generative research questions ) or advance specific ideologies of a position ( ideological research questions ). 1 Other qualitative research questions may build on a body of existing literature and become working guidelines ( ethnographic research questions ). Research questions may also be broadly stated without specific reference to the existing literature or a typology of questions ( phenomenological research questions ), may be directed towards generating a theory of some process ( grounded theory questions ), or may address a description of the case and the emerging themes ( qualitative case study questions ). 15 We provide examples of contextual, descriptive, evaluation, explanatory, exploratory, generative, ideological, ethnographic, phenomenological, grounded theory, and qualitative case study research questions in qualitative research in Table 4 , and the definition of qualitative hypothesis-generating research in Table 5 .

Qualitative studies usually pose at least one central research question and several subquestions starting with How or What . These research questions use exploratory verbs such as explore or describe . These also focus on one central phenomenon of interest, and may mention the participants and research site. 15

Hypotheses in qualitative research

Hypotheses in qualitative research are stated in the form of a clear statement concerning the problem to be investigated. Unlike in quantitative research where hypotheses are usually developed to be tested, qualitative research can lead to both hypothesis-testing and hypothesis-generating outcomes. 2 When studies require both quantitative and qualitative research questions, this suggests an integrative process between both research methods wherein a single mixed-methods research question can be developed. 1

FRAMEWORKS FOR DEVELOPING RESEARCH QUESTIONS AND HYPOTHESES

Research questions followed by hypotheses should be developed before the start of the study. 1 , 12 , 14 It is crucial to develop feasible research questions on a topic that is interesting to both the researcher and the scientific community. This can be achieved by a meticulous review of previous and current studies to establish a novel topic. Specific areas are subsequently focused on to generate ethical research questions. The relevance of the research questions is evaluated in terms of clarity of the resulting data, specificity of the methodology, objectivity of the outcome, depth of the research, and impact of the study. 1 , 5 These aspects constitute the FINER criteria (i.e., Feasible, Interesting, Novel, Ethical, and Relevant). 1 Clarity and effectiveness are achieved if research questions meet the FINER criteria. In addition to the FINER criteria, Ratan et al. described focus, complexity, novelty, feasibility, and measurability for evaluating the effectiveness of research questions. 14

The PICOT and PEO frameworks are also used when developing research questions. 1 The following elements are addressed in these frameworks, PICOT: P-population/patients/problem, I-intervention or indicator being studied, C-comparison group, O-outcome of interest, and T-timeframe of the study; PEO: P-population being studied, E-exposure to preexisting conditions, and O-outcome of interest. 1 Research questions are also considered good if these meet the “FINERMAPS” framework: Feasible, Interesting, Novel, Ethical, Relevant, Manageable, Appropriate, Potential value/publishable, and Systematic. 14

As we indicated earlier, research questions and hypotheses that are not carefully formulated result in unethical studies or poor outcomes. To illustrate this, we provide some examples of ambiguous research question and hypotheses that result in unclear and weak research objectives in quantitative research ( Table 6 ) 16 and qualitative research ( Table 7 ) 17 , and how to transform these ambiguous research question(s) and hypothesis(es) into clear and good statements.

a These statements were composed for comparison and illustrative purposes only.

b These statements are direct quotes from Higashihara and Horiuchi. 16

a This statement is a direct quote from Shimoda et al. 17

The other statements were composed for comparison and illustrative purposes only.

CONSTRUCTING RESEARCH QUESTIONS AND HYPOTHESES

To construct effective research questions and hypotheses, it is very important to 1) clarify the background and 2) identify the research problem at the outset of the research, within a specific timeframe. 9 Then, 3) review or conduct preliminary research to collect all available knowledge about the possible research questions by studying theories and previous studies. 18 Afterwards, 4) construct research questions to investigate the research problem. Identify variables to be accessed from the research questions 4 and make operational definitions of constructs from the research problem and questions. Thereafter, 5) construct specific deductive or inductive predictions in the form of hypotheses. 4 Finally, 6) state the study aims . This general flow for constructing effective research questions and hypotheses prior to conducting research is shown in Fig. 1 .

Research questions are used more frequently in qualitative research than objectives or hypotheses. 3 These questions seek to discover, understand, explore or describe experiences by asking “What” or “How.” The questions are open-ended to elicit a description rather than to relate variables or compare groups. The questions are continually reviewed, reformulated, and changed during the qualitative study. 3 Research questions are also used more frequently in survey projects than hypotheses in experiments in quantitative research to compare variables and their relationships.

Hypotheses are constructed based on the variables identified and as an if-then statement, following the template, ‘If a specific action is taken, then a certain outcome is expected.’ At this stage, some ideas regarding expectations from the research to be conducted must be drawn. 18 Then, the variables to be manipulated (independent) and influenced (dependent) are defined. 4 Thereafter, the hypothesis is stated and refined, and reproducible data tailored to the hypothesis are identified, collected, and analyzed. 4 The hypotheses must be testable and specific, 18 and should describe the variables and their relationships, the specific group being studied, and the predicted research outcome. 18 Hypotheses construction involves a testable proposition to be deduced from theory, and independent and dependent variables to be separated and measured separately. 3 Therefore, good hypotheses must be based on good research questions constructed at the start of a study or trial. 12

In summary, research questions are constructed after establishing the background of the study. Hypotheses are then developed based on the research questions. Thus, it is crucial to have excellent research questions to generate superior hypotheses. In turn, these would determine the research objectives and the design of the study, and ultimately, the outcome of the research. 12 Algorithms for building research questions and hypotheses are shown in Fig. 2 for quantitative research and in Fig. 3 for qualitative research.

EXAMPLES OF RESEARCH QUESTIONS FROM PUBLISHED ARTICLES

• EXAMPLE 1. Descriptive research question (quantitative research)
• - Presents research variables to be assessed (distinct phenotypes and subphenotypes)
• “BACKGROUND: Since COVID-19 was identified, its clinical and biological heterogeneity has been recognized. Identifying COVID-19 phenotypes might help guide basic, clinical, and translational research efforts.
• RESEARCH QUESTION: Does the clinical spectrum of patients with COVID-19 contain distinct phenotypes and subphenotypes? ” 19
• EXAMPLE 2. Relationship research question (quantitative research)
• - Shows interactions between dependent variable (static postural control) and independent variable (peripheral visual field loss)
• “Background: Integration of visual, vestibular, and proprioceptive sensations contributes to postural control. People with peripheral visual field loss have serious postural instability. However, the directional specificity of postural stability and sensory reweighting caused by gradual peripheral visual field loss remain unclear.
• Research question: What are the effects of peripheral visual field loss on static postural control ?” 20
• EXAMPLE 3. Comparative research question (quantitative research)
• - Clarifies the difference among groups with an outcome variable (patients enrolled in COMPERA with moderate PH or severe PH in COPD) and another group without the outcome variable (patients with idiopathic pulmonary arterial hypertension (IPAH))
• “BACKGROUND: Pulmonary hypertension (PH) in COPD is a poorly investigated clinical condition.
• RESEARCH QUESTION: Which factors determine the outcome of PH in COPD?
• STUDY DESIGN AND METHODS: We analyzed the characteristics and outcome of patients enrolled in the Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension (COMPERA) with moderate or severe PH in COPD as defined during the 6th PH World Symposium who received medical therapy for PH and compared them with patients with idiopathic pulmonary arterial hypertension (IPAH) .” 21
• EXAMPLE 4. Exploratory research question (qualitative research)
• - Explores areas that have not been fully investigated (perspectives of families and children who receive care in clinic-based child obesity treatment) to have a deeper understanding of the research problem
• “Problem: Interventions for children with obesity lead to only modest improvements in BMI and long-term outcomes, and data are limited on the perspectives of families of children with obesity in clinic-based treatment. This scoping review seeks to answer the question: What is known about the perspectives of families and children who receive care in clinic-based child obesity treatment? This review aims to explore the scope of perspectives reported by families of children with obesity who have received individualized outpatient clinic-based obesity treatment.” 22
• EXAMPLE 5. Relationship research question (quantitative research)
• - Defines interactions between dependent variable (use of ankle strategies) and independent variable (changes in muscle tone)
• “Background: To maintain an upright standing posture against external disturbances, the human body mainly employs two types of postural control strategies: “ankle strategy” and “hip strategy.” While it has been reported that the magnitude of the disturbance alters the use of postural control strategies, it has not been elucidated how the level of muscle tone, one of the crucial parameters of bodily function, determines the use of each strategy. We have previously confirmed using forward dynamics simulations of human musculoskeletal models that an increased muscle tone promotes the use of ankle strategies. The objective of the present study was to experimentally evaluate a hypothesis: an increased muscle tone promotes the use of ankle strategies. Research question: Do changes in the muscle tone affect the use of ankle strategies ?” 23

EXAMPLES OF HYPOTHESES IN PUBLISHED ARTICLES

• EXAMPLE 1. Working hypothesis (quantitative research)
• - A hypothesis that is initially accepted for further research to produce a feasible theory
• “As fever may have benefit in shortening the duration of viral illness, it is plausible to hypothesize that the antipyretic efficacy of ibuprofen may be hindering the benefits of a fever response when taken during the early stages of COVID-19 illness .” 24
• “In conclusion, it is plausible to hypothesize that the antipyretic efficacy of ibuprofen may be hindering the benefits of a fever response . The difference in perceived safety of these agents in COVID-19 illness could be related to the more potent efficacy to reduce fever with ibuprofen compared to acetaminophen. Compelling data on the benefit of fever warrant further research and review to determine when to treat or withhold ibuprofen for early stage fever for COVID-19 and other related viral illnesses .” 24
• EXAMPLE 2. Exploratory hypothesis (qualitative research)
• - Explores particular areas deeper to clarify subjective experience and develop a formal hypothesis potentially testable in a future quantitative approach
• “We hypothesized that when thinking about a past experience of help-seeking, a self distancing prompt would cause increased help-seeking intentions and more favorable help-seeking outcome expectations .” 25
• “Conclusion
• Although a priori hypotheses were not supported, further research is warranted as results indicate the potential for using self-distancing approaches to increasing help-seeking among some people with depressive symptomatology.” 25
• EXAMPLE 3. Hypothesis-generating research to establish a framework for hypothesis testing (qualitative research)
• “We hypothesize that compassionate care is beneficial for patients (better outcomes), healthcare systems and payers (lower costs), and healthcare providers (lower burnout). ” 26
• Compassionomics is the branch of knowledge and scientific study of the effects of compassionate healthcare. Our main hypotheses are that compassionate healthcare is beneficial for (1) patients, by improving clinical outcomes, (2) healthcare systems and payers, by supporting financial sustainability, and (3) HCPs, by lowering burnout and promoting resilience and well-being. The purpose of this paper is to establish a scientific framework for testing the hypotheses above . If these hypotheses are confirmed through rigorous research, compassionomics will belong in the science of evidence-based medicine, with major implications for all healthcare domains.” 26
• EXAMPLE 4. Statistical hypothesis (quantitative research)
• - An assumption is made about the relationship among several population characteristics ( gender differences in sociodemographic and clinical characteristics of adults with ADHD ). Validity is tested by statistical experiment or analysis ( chi-square test, Students t-test, and logistic regression analysis)
• “Our research investigated gender differences in sociodemographic and clinical characteristics of adults with ADHD in a Japanese clinical sample. Due to unique Japanese cultural ideals and expectations of women's behavior that are in opposition to ADHD symptoms, we hypothesized that women with ADHD experience more difficulties and present more dysfunctions than men . We tested the following hypotheses: first, women with ADHD have more comorbidities than men with ADHD; second, women with ADHD experience more social hardships than men, such as having less full-time employment and being more likely to be divorced.” 27
• “Statistical Analysis
• ( text omitted ) Between-gender comparisons were made using the chi-squared test for categorical variables and Students t-test for continuous variables…( text omitted ). A logistic regression analysis was performed for employment status, marital status, and comorbidity to evaluate the independent effects of gender on these dependent variables.” 27

EXAMPLES OF HYPOTHESIS AS WRITTEN IN PUBLISHED ARTICLES IN RELATION TO OTHER PARTS

• EXAMPLE 1. Background, hypotheses, and aims are provided
• “Pregnant women need skilled care during pregnancy and childbirth, but that skilled care is often delayed in some countries …( text omitted ). The focused antenatal care (FANC) model of WHO recommends that nurses provide information or counseling to all pregnant women …( text omitted ). Job aids are visual support materials that provide the right kind of information using graphics and words in a simple and yet effective manner. When nurses are not highly trained or have many work details to attend to, these job aids can serve as a content reminder for the nurses and can be used for educating their patients (Jennings, Yebadokpo, Affo, & Agbogbe, 2010) ( text omitted ). Importantly, additional evidence is needed to confirm how job aids can further improve the quality of ANC counseling by health workers in maternal care …( text omitted )” 28
• “ This has led us to hypothesize that the quality of ANC counseling would be better if supported by job aids. Consequently, a better quality of ANC counseling is expected to produce higher levels of awareness concerning the danger signs of pregnancy and a more favorable impression of the caring behavior of nurses .” 28
• “This study aimed to examine the differences in the responses of pregnant women to a job aid-supported intervention during ANC visit in terms of 1) their understanding of the danger signs of pregnancy and 2) their impression of the caring behaviors of nurses to pregnant women in rural Tanzania.” 28
• EXAMPLE 2. Background, hypotheses, and aims are provided
• “We conducted a two-arm randomized controlled trial (RCT) to evaluate and compare changes in salivary cortisol and oxytocin levels of first-time pregnant women between experimental and control groups. The women in the experimental group touched and held an infant for 30 min (experimental intervention protocol), whereas those in the control group watched a DVD movie of an infant (control intervention protocol). The primary outcome was salivary cortisol level and the secondary outcome was salivary oxytocin level.” 29
• “ We hypothesize that at 30 min after touching and holding an infant, the salivary cortisol level will significantly decrease and the salivary oxytocin level will increase in the experimental group compared with the control group .” 29
• EXAMPLE 3. Background, aim, and hypothesis are provided
• “In countries where the maternal mortality ratio remains high, antenatal education to increase Birth Preparedness and Complication Readiness (BPCR) is considered one of the top priorities [1]. BPCR includes birth plans during the antenatal period, such as the birthplace, birth attendant, transportation, health facility for complications, expenses, and birth materials, as well as family coordination to achieve such birth plans. In Tanzania, although increasing, only about half of all pregnant women attend an antenatal clinic more than four times [4]. Moreover, the information provided during antenatal care (ANC) is insufficient. In the resource-poor settings, antenatal group education is a potential approach because of the limited time for individual counseling at antenatal clinics.” 30
• “This study aimed to evaluate an antenatal group education program among pregnant women and their families with respect to birth-preparedness and maternal and infant outcomes in rural villages of Tanzania.” 30
• “ The study hypothesis was if Tanzanian pregnant women and their families received a family-oriented antenatal group education, they would (1) have a higher level of BPCR, (2) attend antenatal clinic four or more times, (3) give birth in a health facility, (4) have less complications of women at birth, and (5) have less complications and deaths of infants than those who did not receive the education .” 30

Research questions and hypotheses are crucial components to any type of research, whether quantitative or qualitative. These questions should be developed at the very beginning of the study. Excellent research questions lead to superior hypotheses, which, like a compass, set the direction of research, and can often determine the successful conduct of the study. Many research studies have floundered because the development of research questions and subsequent hypotheses was not given the thought and meticulous attention needed. The development of research questions and hypotheses is an iterative process based on extensive knowledge of the literature and insightful grasp of the knowledge gap. Focused, concise, and specific research questions provide a strong foundation for constructing hypotheses which serve as formal predictions about the research outcomes. Research questions and hypotheses are crucial elements of research that should not be overlooked. They should be carefully thought of and constructed when planning research. This avoids unethical studies and poor outcomes by defining well-founded objectives that determine the design, course, and outcome of the study.

Disclosure: The authors have no potential conflicts of interest to disclose.

Author Contributions:

• Conceptualization: Barroga E, Matanguihan GJ.
• Methodology: Barroga E, Matanguihan GJ.
• Writing - original draft: Barroga E, Matanguihan GJ.
• Writing - review & editing: Barroga E, Matanguihan GJ.

This paper is in the following e-collection/theme issue:

Published on 22.4.2024 in Vol 13 (2024)

Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study

Authors of this article:

• Tina Černe 1 , MSc   ; 
• Eva Turk 2, 3 , MBA, PhD   ; 
• Spela Mirosevic 1 , MSc, PhD   ; 
• Danica Rotar Pavlič 1 , MD, PhD  

1 Deparment of Family Medicine, Univeristy of Ljubljana, Ljubljana, Slovenia

2 Center for Digital Health and Social Innovation, Department of Health Sciences, Univerisity of St. Pölten, St. Pölten, Austria

3 Medical Faculty, University of Maribor, Maribor, Slovenia

Corresponding Author:

Tina Černe, MSc

Deparment of Family Medicine

Univeristy of Ljubljana

Poljanski nasip 58

Ljubljana, 1000

Phone: 386 041920083

Email: [email protected]

Background: Rare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neurological health. People with rare diseases face challenges such as delayed diagnosis, limited medical support, and financial burden. Caregivers, usually family members, bear significant physical and emotional burdens. Understanding the experiences of patients with rare disease and their caregivers is critical to effective care, but this is still underresearched. Better support and understanding of the challenges faced by both patients and caregivers is clearly needed. Our study will explore the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services.

Objective: This study aims to explore the experiences of patients with rare disease and their caregivers with Slovenian health care providers and to create a theoretical model of needs and experiences.

Methods: This is a qualitative thematic analysis study, using the codebook approach. The study will conduct semi–open-ended interviews to understand the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. The interview questions will be based on an extensive literature review. Data from the interviews will be analyzed using thematic analysis to identify patterns and build a thematic map. Data will be analyzed by at least 2 coders. To ensure reliability, respondent validation will be conducted and negative cases investigated. Any discrepancies will be resolved by consulting the entire research team until a consensus is reached.

Results: This study was not specifically funded. However, author TČ is supported by grant number P3-0339 from the Slovenian Agency for Research and Innovation. This study was approved by the Medical Ethics Committee of the Republic of Slovenia (0120-47/2022/3), and recruitment is expected to begin in May 2024, with data analysis results anticipated by the end of 2025.

Conclusions: This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care.

International Registered Report Identifier (IRRID): PRR1-10.2196/53362

Introduction

Rare diseases in europe and slovenia.

In Europe, rare diseases are defined as diseases with a prevalence of less than 5 per 10,000 people in the population [ 1 ]. While individual disease incidence is small, the collective number of all types of rare diseases is large [ 2 ]. The estimated number of rare diseases is currently between 6000 and 8000 [ 3 ]. They are usually chronic and complex and are associated with physical, mental, or neurological disorders. The psychosocial and emotional impact on affected individuals and families is significant and often exacerbated by a lack of adequate community support and services [ 4 ].

Health Care Needs of Patients With Rare Disease

Rare diseases, due to their multisystemic nature and associated cognitive and developmental challenges, manifest a wide range of symptoms, resulting in diverse health care needs. Managing these symptoms necessitates the involvement of various health care professionals, the use of medical devices, and “orphan drugs” [ 5 ]—specialized medicinal products developed to treat, diagnose, or prevent specific rare diseases [ 6 ].

Challenges Faced by Patients With Rare Disease and Caregivers

Rare diseases present numerous challenges, not only for those directly affected but also for their caregivers. These challenges include delayed diagnosis, difficulties accessing health care, and the financial burden of medical treatment [ 7 ]. Caregivers of individuals with rare diseases, who are often parents or spouses, shoulder a substantial physical and emotional burden without receiving financial compensation [ 8 ]. Their responsibilities encompass providing transportation, running errands, offering emotional support, monitoring symptoms, and performing additional household tasks [ 9 , 10 ]. Many caregivers are forced to reduce or quit their jobs due to these caregiving responsibilities, leading to additional financial strain [ 11 ]. The caregivers’ physical and mental well-being directly impacts the level of care they can provide to patients with rare diseases [ 2 ].

Research Gap in Slovenia

In Slovenia, rare diseases pose a significant public health concern and represent a considerable challenge for the health care system [ 12 ]. It is roughly estimated that around 150,000 patients are affected by rare diseases in Slovenia [ 13 ], which emphasizes the importance of addressing this issue [ 14 ]. Recently, a register of rare, nonmalignant diseases was established in the Republic of Slovenia, which should provide valuable insights into this topic. While some studies have been conducted, such as the one by Halec et al [ 15 ] on the impact of rare diseases on an individual’s quality of life, and others by Stanimirović et al [ 12 - 14 ] focusing on systems development and strategies to improve care for patients with rare disease, there remains a notable absence of research centered on the experiences and needs of patients with rare disease and their caregivers in Slovenia.

Addressing Research Gap by This Qualitative Study

In Slovenia, there is little research on the experiences of caregivers of people with rare diseases, especially compared with the studies on caregivers worldwide. While studies often focus on specific diseases and their pathophysiology [ 8 ], a comprehensive exploration of the experiences of both patients and caregivers is crucial for health care providers. Such insights can aid in developing treatments and support services that align with the unique challenges faced by this population [ 16 ].

Preliminary findings of a scoping review [ 17 ] and discussions with representatives of various rare disease associations highlight the pressing need for better support and understanding of such issues and that there is a lack of knowledge in the field about the challenges experienced by caregivers and people with rare diseases. The Ministry of Health states in the work plan in the field of rare diseases in the Republic of Slovenia for the period 2021-2030 that it would be useful to research the needs of patients with rare diseases in Slovenia, with special attention to social aspects, palliative care, psychological support, and economic aspects [ 18 ]. There is, therefore, a need to identify clear areas for change to help researchers, health care providers, and health policy makers develop, plan, and facilitate better services. The establishment of the rare non-malignant diseases registry of the Republic of Slovenia [ 19 ] and the development of a more comprehensive rare disease ecosystem [ 14 ] are important steps, but qualitative research focusing on the experiences of people living with rare diseases will complement these efforts and provide valuable insights.

Potential Contributions of This Study

This research study holds the potential to contribute significantly to science and the rare disease community in Slovenia by providing a better understanding of the human dimension, which is essential for developing patient-centered policies that consider the psychosocial, emotional, and practical challenges faced by people with rare diseases and their caregivers; identifying gaps in access to health services and psychosocial support; offering insights into priority areas for action that can guide policy makers; and filling a critical research gap in Slovenia by adding valuable knowledge to the rare disease field.

By addressing these aspects, this study has the potential to make a substantial and unique contribution to both the scientific community and the rare disease community in Slovenia.

The primary aim of the study is to explore the needs and experiences of adults with rare diseases and caregivers of people with rare diseases with health care service providers in Slovenia. The secondary aim is to identify gaps in access to health care services and psychosocial support.

The objectives of the research are as follows: (1) to gain insights into the needs and experiences of adults with rare diseases with health care providers in Slovenia; (2) to gain insight into the needs and experiences of caregivers of people with rare diseases with health care service providers in Slovenia; and (3) based on the obtained data, develop a thematic map of experiences and needs.

Research Questions

Our research questions are as follows: (1) What are the needs and experiences of adults with rare diseases in relation to health care providers in Slovenia? (2) What are the needs and experiences of caregivers of people with rare diseases in relation to health care providers in Slovenia?

The reporting of this study follows the guidelines of the Consolidated Criteria for Reporting Qualitative Studies in the areas that can be applied to a protocol [ 20 ].

Research Team and Reflexivity

In this qualitative research study, the interviews will be conducted by TČ, who has a master degree in psychology and is currently working as a researcher. TČ has previous experience with interviews and has spent over a year researching rare diseases and access to health care. Informal discussions were held with representatives of rare disease associations in Slovenia before the study began. These discussions served to develop an initial understanding of the challenges faced by the rare disease community. The main goal was to create a basic knowledge base and gain deeper insights into the problems faced by people living with rare diseases and their caregivers. Participants were informed that the study was part of a doctoral degree pursuit. Disclosure of this information provided transparency regarding the academic aims of the researcher and the context in which the study was conducted. The motivation for the research is rooted in the identified lack of comprehensive studies in this area and emphasizes a commitment to contribute meaningful knowledge to better support people living with rare diseases.

Study Design—Theoretical Framework

The study uses a conceptual framework based on the biopsychosocial model of health [ 21 ], which recognizes the interconnectedness of biological, psychological, and social factors associated with rare diseases [ 22 , 23 ]. The biopsychosocial model requires a multidisciplinary approach [ 24 ] and emphasizes the importance of a dynamic and empathetic dyadic relationship between clinicians and patients [ 25 ]. This approach includes examining various health-related factors, such as access to psychological support, impact on mental health, social support (family support, self-help groups or networks, and help from caregivers), availability of health care services, and financial resources for health-related needs. By applying the biopsychosocial model, this study aims to provide a comprehensive understanding of the unique experiences of people living with rare diseases and, based on this, make recommendations to improve health care services for people living with rare diseases.

The study follows the approach of qualitative thematic analysis [ 20 ]. Given the larger scope of our study and the expected high number of participants, we deliberately chose a “codebook” thematic analysis approach [ 26 ]. This structured approach aligns with the pragmatic demands of applied research offering a systematic and organized framework for handling a large volume of qualitative data [ 26 ]. We will use a structured coding framework to develop and document the analysis [ 27 ]. The codebook developed inductively after (some) data familiarization and coding will serve as a tool to guide data coding and a way of mapping or charting the coded data [ 26 ]. Themes that will be developed at an early stage after familiarization, will later be refined or new themes developed based on the subsequent inductive data engagement and analytical process [ 27 ].

In the final phase of the analysis, the identified themes generated from the coded data will be used to create a thematic map, and the results will be compared with the existing and new data to assess their relevance and reliability [ 26 ].

Participant Selection

Participants will be selected through purposive and snowball sampling. Participants will be invited by the research team by email or telephone. Email invitations will be sent by the research team using contact details from a public database of the National Contact Point for Rare Diseases, to which individuals have previously given consent to be contacted. We will also ask participants to invite other people with rare diseases and caregivers of people with rare diseases to participate in the study by using snowball sampling.

We will use snowball sampling, as it is difficult to identify and reach people with rare diseases and their caregivers. We will start with an initial group of participants contacted through the National Contact Point for Rare Disease, conduct interviews, and collect data, followed by an explanation of the snowball sampling process. We will ask the initial participants to provide us with their contact details or to facilitate communication with those who are eligible and willing to participate in the study.

In addition, the research team will contact the pediatric clinic and collaborate with the doctors in the Department of Family Medicine by email. The email will include a presentation of the study explaining the purpose, methodology, potential benefits, and the importance of participation in identifying suitable participants, as well as relevant study documents such as an information leaflet, consent forms, and contact details of the research team. These documents will serve as a reference for the pediatric clinic to inform eligible participants about the study. Approval and cooperation from the relevant authorities at the pediatric clinic will be obtained before contact is made. The aim of contacting the pediatric clinic is to invite eligible caregivers of people with rare diseases to participate in the study, and the aim of contacting the Department of Family Medicine is to invite adult patients with rare diseases.

To avoid overrepresentation of a particular rare disease in the sample, we will follow the guideline that for each rare disease included, a maximum of 2 participants (either the adult patient or the caregiver) will be included.

Sample Size

Braun and Clarke [ 28 ] suggest that studies of experiences and needs collected through interviews require a sample size of 15 to 30 people in order to effectively uncover patterns while maintaining a focus on individual experiences.

Considering the concept of information power, which suggests that a broader study aim, a less specific combination of participants for the research question, and the inclusion of cross-case analysis may require a larger sample size, we decided on a target sample size of at least 40 participants [ 29 ]. This includes 20 adults with rare diseases and 20 caregivers of people with rare diseases. As Malterud et al [ 29 ] suggest, the appraisal of information power will be repeated during the process, supported by an initial analysis. After the first 3 interviews, an initial review of the data will be done and first suggestions of relevant theory will be made [ 29 ].

We will also try to identify and document the reasons for nonparticipation, which will contribute to the transparency and reliability of the study.

This study is being conducted in Slovenia. It includes health care providers at all 3 levels of health care (primary, secondary, and tertiary care). Data will be collected either in our research offices or participants will have the option of a home visit or digital interview. As caregivers of people with rare diseases may have ongoing care needs [ 30 ], we decided to offer them the option of a home visit or digital interview. This gives participants the opportunity to take part at a time and place that is convenient or safe for them [ 31 ]. The individual interviews with adults diagnosed with a rare disease will be conducted independently. Caregivers will have the option to participate in the interviews either separately or, if they prefer, together with the person they care for. This flexibility aims to accommodate the preferences and comfort levels of both participants and caregivers.

Description of Sample

We will include adult patients with rare diseases and caregivers of people with rare diseases in our study. It is important to emphasize that our research will focus on rare, nonmalignant diseases. To determine the rarity of the disease, we will use the European definition of rare diseases, according to which rare diseases are categorized as those that affect less than 5 in 10,000 people in the population. To ensure a comprehensive representation of experiences, we aim to include people with different rare diseases. In addition, our sample will indirectly include people with impaired decision-making capacity, such as those with developmental or cognitive impairments, by involving their caregivers. This decision is in line with ethical considerations, as we recognize that it is difficult for people with developmental disabilities to give fully informed consent due to the nature of their condition. Involving caregivers is seen as an ethical strategy to ensure a full understanding of the research topic while upholding the principles of respect and protection of vulnerable populations. Caregivers can be family members, spouses, unmarried partners, close friends, or other people with direct caring responsibilities. To account for possible regional differences in access to health care and support services, our study will include participants from all 9 health regions of Slovenia. The inclusion criteria extend to people who are directly responsible for people diagnosed with a rare disease.

Data Collection

Separate interview guides will be used to explore the perspectives of adult patients with rare disease and their caregivers. The interview questions were formulated based on a literature review and will be pilot-tested to ensure clarity and effectiveness in data collection. The questions formulated for the interviews are also based on the biopsychosocial model of health [ 21 ]. In line with the biopsychosocial model, our interview questions refer not only to biological factors but also to psychological and social dimensions (how the rare disease affects the participants’ social life and how these conditions influence psychological well-being and social interactions). If subsequent interviews reveal significant topics not covered previously, already interviewed participants may be contacted for additional exploration of those specific areas. Audio recording will be used to capture interviews, ensuring accurate and complete data representation. Participants will be informed about the recording, and explicit consent will be obtained. Field notes will be taken during or after interviews to document contextual information and observations that may enhance the understanding of participants’ experiences. The duration of interviews will be based on the natural flow of the conversation, allowing participants to express themselves fully. Specific timeframes will be tailored to individual preferences and needs. As part of the respondent validation process, we plan to present the results of the study to participants and ask for their feedback and comments. While we will not necessarily provide full transcripts, this approach will ensure that participants have the opportunity to validate the results of the study and contribute to their interpretation.

The sociodemographic questionnaire will collect the following data: age, gender, marital status, education level, employment status, relationship to caregiver (caregiver questionnaire), monthly income, housing situation, rare disease diagnosis, year of diagnosis, duration of symptoms, impact of the disease on daily life, nature of costs associated with the rare disease, frequency of medical visits and difficulties in accessing health care services, and the participants’ support networks.

Data Analysis

Two researchers will code and compare the data. The coding process will be a collaborative effort to ensure reliability and validity. Themes will be derived through a process. First, a series of initial themes will be developed based on the interview guide and existing literature. Coding will be conducted to provide evidence for these initial themes and to identify additional themes derived from the data. The themes and codes will be refined after the initial coding phase through the development and refinement of a coding template. The final phase of coding will be guided by the final template for theme development. We will use the NVivo program (Lumivero), for coding, editing, and structuring the data. We will also carry out respondent validation, that is, we will present results to the participants and ask them for comments [ 32 ]. We will also enrich the data obtained by examining so-called negative cases that deviate from the patterns that otherwise emerge through data saturation [ 33 ]. By examining these cases, we will increase the reliability of the research and gain better insight into the strengths and weaknesses of the research [ 33 ].

Eligibility Criteria

The eligibility criteria for this study are listed in Textbox 1 .

Inclusion criteria for adults with a rare disease

• Aged 18 years or older with a confirmed diagnosis of a rare disease
• Written consent to participate in the study of a person with a rare disease
• Persons who use health services in Slovenia
• Willingness to comply with the study protocol

Exclusion criteria for adults with a rare disease

• Inability to meet the requirements of the study (Participants with severe cognitive impairment or intellectual disabilities will be included in the study indirectly through their caregivers. As qualitative research relies on participants’ ability to articulate their experiences, cognitive impairment may limit meaningful participation).
• Unwillingness to meet the demands of the study
• Refusal to fulfill the requirements of the study (refusal to actively participate in the in-depth interviews, to complete a sociodemographic questionnaire, and to consent to data collection)
• Persons who are unable to communicate in Slovene or who are not able to sufficiently understand and express themselves in Slovene will be excluded from the study

Inclusion criteria for caregivers of people with a rare disease

• Family caregivers who directly care for a person with a confirmed diagnosis of a rare disease. Family caregivers are usually relatives (often the patient’s parents or spouse) who take on most of the physical and emotional burden of caring for the patient without receiving financial compensation (with the exception of family caregivers who receive payment in the form of social benefits) [ 34 ]. They carry out the tasks of monitoring, interpreting, making decisions, taking action, making adjustments, providing care, accessing resources, working with the sick person, and negotiating with the health system [ 35 ]
• Written consent to participate in a study of the caregiver of a person with a rare disease

Exclusion criteria for caregivers of people with a rare disease

• Unwillingness to comply with the requirements of the study (refusal to actively participate in in-depth interviews, to complete a sociodemographic questionnaire, and to consent to data collection)
• Inability to meet the study requirements (lack of cognitive ability to participate in the study, such as severe cognitive impairment, Alzheimer disease, or intellectual disability)
• Persons who have not reached the legal age of adulthood in Slovenia (younger than 18 years) will be excluded from the study
• Persons with whom it is not possible to communicate in the Slovene language or who are not able to understand and express themselves sufficiently in the Slovene language will be excluded from the survey
• Persons who provide care in the context of an employment relationship and who are not close persons to the person they are caring for (eg, paid home caregivers or home help, persons employed in social care institutions) will be excluded

Ethical Considerations

The medical ethics committee of the Republic of Slovenia considers the research to be ethically justifiable. The commission notes that all necessary documentation has been included, the statement is written in a way that is understandable for the participants, the security of data storage is guaranteed, and the anonymization of responses is ensured. The document bears the number 0120-47/2022/3. Explicit informed consent will be obtained from all participants. This comprehensive process will ensure participant understanding, adherence to ethical principles, and compliance with the statement approved by the medical ethics committee. The data collected as part of this study will be stored securely in both physical and electronic form, with access to the data restricted to those directly involved in the research. The electronic data will be anonymized by assigning identification codes and stored in a special database located on the premises of the Department of Family Medicine at the Faculty of Medicine in Ljubljana. Before the data are stored in the database, an anonymized version of the research data is created in order to preserve its usefulness while ensuring the confidentiality of the participants. Data protection is ensured by secure passwords, and passwords are stored separately. Participants will not receive any financial or nonmonetary compensation for their participation in this study.

This study was not specifically funded. However, the author TČ is funded by the Slovenian Agency for Research and Innovation under grant number P3-0339. Data collection through semistructured interviews for the study is scheduled to begin in May 2024 and is expected to be completed on 30 December 2024.

Principal Results

This study aims to gain a deeper understanding of the needs and experiences of people living with rare diseases and their caregivers when interacting with health care providers in Slovenia and to shed light on the gap between them. The results of the research will be presented in a thematic map of the needs and experiences of people living with rare diseases and their caregivers. The thematic map will serve as a visual representation that will provide an overview of the interconnected themes identified in the analysis and improve our understanding of the complex relationships between the needs and experiences of the target groups. As identified in the exploratory phase of our research, we spoke informally with representatives of rare disease associations in Slovenia to understand the challenges faced by this community. They highlighted key issues, including the need for psychological support, gaps in palliative care for children, concerns about the attitudes of health care providers, and gaps in respite care. In addition, they highlighted issues around delays in diagnosis, poor communication with health care professionals, stigmatization, lack of information, and poorly coordinated care. Ongoing research will shed further light on these issues and contribute to a comprehensive understanding of the gap between needs and available services. We expect to gain a deeper understanding of the barriers to accessing health services, the impact of these barriers on disease progression, and their psychosocial consequences. We expect participants to express their needs in terms of support services and to give examples of good practices that can later be used for better planning of health services. We hope that the results will also point to previously overlooked areas that have a significant impact on the lives of people significantly affected by rare diseases. Based on the results, we will make recommendations to improve health services for people with rare diseases.

Limitations

A potential challenge of this study arises from the diversity of rare diseases included. Given the uniqueness of each rare disease, it might be difficult to identify commonalities in experiences and needs. While a national register for rare diseases has recently been established in Slovenia, our main resource remains a web-based website that serves as a national contact point for rare diseases. This website lists various associations. Our approach to recruiting participants is a purposive sampling combined with a snowball approach. However, a potential limitation is that individuals who are more involved in supportive communities may be overrepresented in our sample. Consequently, those who are less proactive in seeking the support they need might be underrepresented. To mitigate this bias, we try to use the snowball principle to recruit people who do not belong to these associations and contact participants through doctors. However, it is important to be aware that using the snowball principle may also have a disadvantage. This method could lead to limited diversity among our informants, which could limit the range of perspectives and experiences we can capture [ 36 ].

Another challenge is that the study focuses primarily on experiences and needs related to access to health services. However, patients with rare diseases and caregivers of people with rare diseases may face challenges and needs beyond health care, such as education and employment. These aspects may not be fully explored in the study.

Comparison With Prior Work

Previous research has shown that participants have a significant need for information, particularly in relation to psychological and health care aspects [ 22 , 37 ]. In particular, the Depping study highlights the importance of personalized information and the desire for better access to experts and treatments within the health care system [ 22 ].

In line with the aims of our study, we found that caregivers and patients often encountered health care professionals whom they perceived as lacking the necessary knowledge and understanding of them or (in the case of caregivers) the person they were caring for [ 22 , 37 - 40 ]. Consequently, they saw a noticeable gap in their access to vital and necessary care, emphasizing the urgency of better training for health care providers [ 22 , 37 - 40 ].

Our study protocol represents a step forward in capturing the specific needs and experiences of people living with rare diseases and their caregivers in Slovenia and differs from previous large-scale surveys, such as the comprehensive study conducted in the United States [ 40 ]. In contrast to these large-scale initiatives, our focus is tailored to the Slovenian health care landscape and provides a local understanding of the challenges faced by this population. By focusing on the specific context of Slovenia, our study aims to fill existing gaps and contribute valuable insights to the current state of knowledge in rare disease research.

Conclusions

This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care.

Acknowledgments

The study was funded by the Slovenian Agency for Research and Innovation (grant P3-0339).

Data Availability

The data sets generated or analyzed during this study are not publicly available due to confidentiality and ethical considerations but are available from the corresponding author on reasonable request.

Authors' Contributions

TČ contributed to the conceptualization and methodology of the project. DRP, ET, and ŠM provided supervision.

Conflicts of Interest

None declared.

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Edited by A Mavragani; submitted 04.10.23; peer-reviewed by G Rouleau, C Myhre Jensen, K Ayers; comments to author 24.01.24; revised version received 12.02.24; accepted 01.03.24; published 22.04.24.

©Tina Černe, Eva Turk, Spela Mirosevic, Danica Rotar Pavlič. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 22.04.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on https://www.researchprotocols.org, as well as this copyright and license information must be included.

This paper is in the following e-collection/theme issue:

Published on 19.4.2024 in Vol 7 (2024)

Acceptance of a Digital Assistant (Anne4Care) for Older Adult Immigrants Living With Dementia: Qualitative Descriptive Study

Authors of this article:

Original Paper

• Marloes Bults 1 , PhD   ; 
• Catharina Margaretha van Leersum 2, 3 , PhD   ; 
• Theodorus Johannes Josef Olthuis 4 , MA   ; 
• Egbert Siebrand 5 , MSc   ; 
• Zohrah Malik 1 , MSc   ; 
• Lili Liu 6 , PhD   ; 
• Antonio Miguel-Cruz 6, 7, 8 , DSC   ; 
• Jan Seerp Jukema 9 , PhD   ; 
• Marjolein Elisabeth Maria den Ouden 1, 4 , PhD  

1 Technology, Health & Care Research Group, Saxion University of Applied Sciences, Enschede, Netherlands

2 Department of Technology, Policy, and Society, Faculty of Behavioural, Management and Social Sciences, University of Twente, Enschede, Netherlands

3 Faculty of Humanities, Open University, Heerlen, Netherlands

4 Care & Technology Research Group, Regional Community College of Twente, Hengelo, Netherlands

5 Research Group Ethics and Technology, Saxion University of Applied Sciences, Enschede, Netherlands

6 School of Public Health Sciences, Faculty of Health, University of Waterloo, Waterloo, ON, Canada

7 Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB, Canada

8 GRRIT Hub Glenrose Rehabilitation Research, Innovation & Technology, Glenrose Rehabilitation Hospital, Edmonton, AB, Canada

9 Smart Health Research Group, Saxion University of Applied Sciences, Enschede, Netherlands

Corresponding Author:

Marloes Bults, PhD

Technology, Health & Care Research Group

Saxion University of Applied Sciences

M H Tromplaan 28 Enschede

Enschede, 7513 AB

Netherlands

Phone: 31 620946213

Email: [email protected]

Background: There is a need to develop and coordinate dementia care plans that use assistive technology for vulnerable groups such as immigrant populations. However, immigrant populations are seldom included in various stages of the development and implementation of assistive technology, which does not optimize technology acceptance.

Objective: This study aims to gain an in-depth understanding of the acceptance of a digital personal assistant, called Anne4Care, by older adult immigrants living with dementia in their own homes.

Methods: This study used a qualitative descriptive research design with naturalistic inquiry. A total of 13 older adults participated in this study. The participants were invited for 2 interviews. After an introduction of Anne4Care, the first interview examined the lives and needs of participants, their expectations, and previous experiences with assistive technology in daily life. Four months later, the second interview sought to understand facilitators and barriers, suggestions for modifications, and the role of health care professionals. Three semistructured interviews were conducted with health care professionals to examine the roles and challenges they experienced in the use and implementation of Anne4Care. Content analysis, using NVivo11, was performed on all transcripts.

Results: All 13 participants had an immigration background. There were 10 male and 3 female participants, with ages ranging from 52 to 83 years. Participants were diagnosed with an early-stage form of dementia or acquired brain injury. None of the older adult participants knew or used digital assistive technology at the beginning. They obtained assistance from health care professionals and family caregivers who explained and set up the technology. Four themes were found to be critical aspects of the acceptance of the digital personal assistant Anne4Care: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. Assistance at first increased the burden on health care professionals and families. After the initial effort, most health care professionals and families experienced that Anne4Care reduced their tasks and stress. Contributions of Anne4Care included companionship, help with daily tasks, and opportunities to communicate in multiple languages. On the other hand, some participants expressed anxiety toward the use of Anne4Care. Furthermore, the platform required an internet connection at home and Anne4Care could not be used outside the home.

Conclusions: Although older adult immigrants living with dementia had no previous experience with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by older adult immigrants living with dementia was rather high. The digital assistant can be further developed to allow for interactive conversations and for use outside of one’s home. Participation of end users during various stages of the development, refinement, and implementation of health technology innovations is of utmost importance to maximize technology acceptance.

Introduction

Dementia is a global health problem associated with emotional and financial challenges for people living with dementia, their relatives, health care professionals, and health organizations [ 1 , 2 ]. Worldwide, approximately 47 million people are diagnosed with dementia [ 3 ]. Around 280,000 persons are presently living with dementia in the Netherlands among a population of nearly 19 million [ 4 ]. The number of people living with dementia is expected to increase in the coming years. People with an immigration background are at an increased risk of developing dementia and are more likely to experience barriers in accessing dementia services and care, which may lead to health inequities and a reduction of quality of life [ 5 - 7 ]. Hence, there is a need to develop and coordinate dementia care plans, including the use of technology, for marginalized older adults living with dementia, such as those with an immigration background and low literacy levels [ 8 ].

Health Literacy and Health Technology

Health literacy has been defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” [ 9 ]. Adequate health literacy and access to services among immigrant populations are important to empower, support or facilitate these persons to become active participants in their health [ 10 ]. Persons with limited health literacy have difficulty finding, understanding, and applying information about health and health care. Health technology–based solutions that support health promotion, for example, mental and physical health, offer opportunities to increase health literacy in vulnerable populations [ 11 , 12 ].

The World Health Organization reports that innovative health technologies are promising tools to enhance knowledge, skills, and coping mechanisms to improve the daily lives of people with dementia and their caregivers [ 13 ]. In recent years, a variety of technologies to support self-management have been developed for people with dementia and their caregivers. Studies have focused on the effect of these technologies on the physical, mental, and social well-being of people with dementia and their relatives and families [ 14 , 15 ]. Technology seems to stimulate cognitive function and communication skills and reduce loneliness among people with dementia, but these results are personal and context-dependent [ 14 , 15 ]. Acceptance of technology is a major challenge and prerequisite for the implementation of technology in practice. For successful technology implementation in the daily lives of people, it is important to have insight into the acceptance of technology among end users. Although studies have examined the acceptance of technology among people living with dementia and their caregivers [ 16 - 18 ], the number of studies that focus specifically on older adult immigrants living with dementia is minimal.

Citizen Science

Co-design and the involvement of people with dementia and their professional and family caregivers are crucial elements for the acceptance of technology [ 17 ]. However, immigrant populations are seldom included in stages of development, refinement, and implementation of assistive technology innovations [ 19 ]. This can be associated with low levels of acceptance of health technology innovations, which can contribute to health inequities among populations. One opportunity to increase the involvement of end users is through citizen science, which is an approach that engages end users to be partners in research so that their experiences and needs are considered [ 20 ]. Citizen science is a powerful approach to include public participation in research as well as optimize acceptance of technologies [ 20 , 21 ]. In citizen science, scientific principles and methods are used by nonprofessional “scientists” in close collaboration with scientific researchers [ 22 ]. The involvement of older adults in the development, refinement, and implementation of technology, acknowledging their expertise and needs, and working together in short iterations to adapt the technology for their specific needs are reported to be valuable elements by scientific researchers, older adults, and health care professionals [ 23 ].

This qualitative descriptive study aimed to provide an in-depth understanding of the acceptance of a digital personal assistant, called Anne4Care, among older adult immigrants living with dementia by using a citizen science approach.

Research Design

This study used a qualitative descriptive research design with a naturalistic inquiry [ 24 ] and citizen science principles [ 20 ]. In this study, Anne4Care was extended with the development of a Turkish version. All the involved older adults had the task of testing the device as well as communicating with each other, their care professionals, and the Anne4Care help desk. For example, there were workshop-like meetings in which all shared experiences, assisted each other with difficulties, and expressed the need to further develop the Turkish version of Anne4Care. Furthermore, participants actively collaborated with scientific researchers, for example, in discussing the topics for the interview guide and analyzing the data from the interviews.

Aligning with citizen science principles there was a close collaboration between older adults participating as co-researchers, health care professionals, and scientific researchers. A detailed description of how older adults with an immigration background were engaged in this study is described in a separate paper [ 23 ]. The team of researchers closely collaborated with a group of citizens representing the target group and health care professionals in their role as co-researcher, during all phases of this study: recruitment, obtaining informed consent, data collection, and analysis.

This research was part of the TOPFIT Citizenlab program, a research and innovation program in which citizens, health care professionals, and companies join forces with scientific researchers to develop and implement technology for health.

The Technology

Anne4Care is a digital personal assistant that includes video-calling, a personal agenda, medication reminders, reading the news, and games that can be used in one’s home. Anne4Care is a technological platform created to help people with dementia to continue living independently in their own homes and supporting caregivers in their tasks [ 25 ]. Anne4Care included hardware as well as a software platform. Anne4Care is available in Dutch, German, Italian, and English. The company was developing a Turkish version of Anne4Care and saw the embedding of Anne4Care in homes of older adults with an immigration background as an opportunity to test, improve, and implement the latest version.

Recruitment Strategy

The recruitment of participants was performed by 3 health care professionals from 2 health care organizations. These organizations provide care for clients with an immigration background with cognitive impairments.

Inclusion criteria were as follows:

• Diagnosed with an early-stage form of dementia or acquired brain injury;
• Having an immigrant background;
• Visiting the activity program of 1 of the 2 participating health care organizations

Exclusion criteria were as follows:

• Diagnosed with a severe stage form of dementia limiting their ability to participate

All clients of the 2 health care organizations (IMEAN Consultancy & Care and Alifa Wellbeing Older Adults) were invited by their health care professionals to participate in this study. All older adult participants had an immigration background, that is, 1 came from Britain and the other 12 came from Turkey ( Table 1 ). They visited the activity program of 1 of the 2 health care organizations, which are situated in the Twente region of the Netherlands. In addition to an immigration background, all 13 older adult participants, or co-researchers, had an early-stage form of dementia or acquired brain injury. The sample included 10 male and 3 female participants, and their ages ranged from 52 to 83 years. There were no exclusion criteria based on digital literacy, that is, participants did not need any experience with technology. Internet access was provided to participants who did not have an internet connection at home.

All 3 health care professionals involved in this study were female. They introduced Anne4Care to the older adults, assisted them, and were in close contact with the participants during all phases of this study. The health care professionals took care of the clients and spoke their native language, which created a safe and trustful environment. The health care professionals also served as a voice for the participants who could not communicate in the Dutch language.

Data Collection

Anne4Care was introduced to allow health care professionals to communicate with and monitor older adults. Data were collected between September 2020 and November 2021. Semistructured in-depth interviews took place at the care organization or at the home of the older adult immigrants. The location was chosen based on a participant’s preference. During the interviews, a care professional was present and served as an interpreter. Participants were invited for 2 interviews. The first interview was planned shortly after the introduction of Anne4Care in their home, and a second interview 4 months later. Participants had the opportunity to continue using Anne4Care after the data collection period, funded through a stimulation subsidy for eHealth at home during the COVID-19 pandemic. Five researchers with mixed credentials, training, occupation, location, and gender conducted the interviews (MB, CMvL, TJJO, ES, and ZM). To secure interrater reliability, the researchers had biweekly meetings to discuss the procedure and previous interviews. Two researchers were present during each interview; the teams of 2 were different for each interview. One was the main interviewer and the other took notes and asked additional questions. The follow-up interviews were conducted by the same researchers to ensure the established relationship between researchers and older adults.

The topic guide was developed in collaboration with 1 participant from the daycare facility and 3 health care professionals. Thirteen first interviews were conducted focusing on understanding the lives and care needs of the participants, learning about their expectations regarding Anne4Care, and sharing previous experiences with care and technologies, what facilitators and barriers they encountered while using technology ( Multimedia Appendix 1 ). The first interviews lasted between 30 and 60 minutes. A total of 8-second interviews were conducted with the same participants who participated in the first interview (5 of the participants were not able to participate in the second interview due to COVID-19 illness). The second interview focused on the facilitators and barriers participants experienced when using Anne4Care, suggestions for modifications of Anne4Care, and the role of health care professionals in using technology ( Multimedia Appendix 1 ). The second interview lasted between 20 and 45 minutes.

Three semistructured interviews were conducted with the 3 health care professionals. These interviews took place at the care organization and lasted for 60 minutes. The aim of these interviews was to talk about their role and the challenges they experienced as professionals in the use and implementation of Anne4Care ( Multimedia Appendix 2 ). Furthermore, the findings of the interviews with the older adults were shared with the care professionals.

Data Analysis

All interviews were audio recorded and transcribed verbatim. The transcripts were made in English and Dutch. All Turkish spoken words were translated by an interpreter during the interviews. Only these translations were part of the transcripts. Content analysis of transcripts used an inductive approach [ 26 , 27 ]. We used the software package NVivo11 to support data coding. Open coding was used to identify relevant themes, there were no themes in advance of the data analysis. Several steps were taken to develop a code book. First, 3 researchers (MB, CMvL, and TJJO) performed the analysis of 2 transcripts and compared codes. A preliminary codebook was developed comprising these themes. Second, the coding of one transcript was discussed together with one older adult. This participant was motivated and had some previous experience with research and data analysis. Together with the co-researcher, additional themes were added to the code book. Last, the other transcripts were analyzed by 1 researcher (CMvL). The data analysis and application of codes were discussed during biweekly meetings with the research team. Data saturation was reached after analyzing the data obtained with all involved older adults and care professionals. During the data analysis, similar and confirmation of all findings appeared when analyzing and coding the transcripts. In preparation for the paper, the quotes in the raw data were translated into English.

Ethical Considerations

Ethics approval was obtained from the ethical advice committee of the University of Applied Sciences Saxion (reference number SEAC-2020-005). The participants were informed about the study before the start of the research period with Anne4Care. Thirteen participants gave written consent and were informed about their right to withdraw at any time. Data were anonymized, confidentiality was maintained, and the data will be retained for a period of 10 years after which they will be destroyed.

The analysis of data revealed that the personal situation and perceptions of participants regarding access to dementia services and care (in short: care) were 2 underlying themes that described the adopter system from the older adult immigrants living with dementia. The code tree is presented in Multimedia Appendix 3 .

Personal Situation

Personal situation considers the perceptions of older adult immigrants regarding their health status (physically and mentally), level of spirituality, quality of life, social and societal participation, and daily functioning. The personal lives of participants were diverse, with their immigration background as a main commonality. They were all born in another country and moved to the Netherlands for their work. Most of the participants worked in the textile or metal industry. The participants were all retired and visited the facility for daytime activities once or twice a week. On other days, their daily activities consisted of grocery shopping, housekeeping, or just doing nothing. Spirituality (eg, religion) was an important part of the lives of most participants. The physical and mental health of all participants is deteriorating, with illnesses that range in severity. In addition to dementia or acquired brain injury, some have health conditions such as diabetes, high blood pressure, and cataracts. These deteriorating health conditions had a major impact on their daily functioning as well as their quality of life. In the earlier years of their lives, some participants experienced challenges in participating in Dutch society, but this became even more difficult during the COVID-19 pandemic. Social relations were mainly with family members, and some had close contact with their neighbors.

Since I came here in the Netherlands, in the year 1977, I bought a house and since then until now I live in the same street, the same neighborhood with the same neighbors and this was always a very good network. It is a community with the Turkish and Dutch neighbors, in which I am a beloved man, I go to the mosque a lot and had several board positions for a while, such as a board member of the mosque. [Participant H]

Care refers to the perceptions of participants regarding access to dementia services and care in including all assistive and care needs of the participants. All participants acknowledged the fact that they became older and had increasing trouble taking care of themselves. Some participants had troublesome experiences with care in the past or could not find suitable and personalized care. In most cases, family members, partners, children, or neighbors assisted and provided support and care. However, most participants perceived this as a burden for their relatives and, therefore, was not a desirable situation.

Now there is someone who assists in housekeeping, and our children assist with the more administrative tasks. Next-door there are some younger neighbors who offered to help for example with the garden. I have a lot of help from all of them. However, in the past I had a lot of frustrations with health care professionals. When we arranged a time, they did not show up and none made any record of my needs. Then the agency went bankrupt and the clients were left in the dark. [Participant G]

Acceptance of Anne4Care

In addition to the 2 underlying themes, the analysis of the acceptance of Anne4Care by older adult immigrants revealed four themes: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. In this section, results are presented for each theme. The code tree is presented in Multimedia Appendix 3 . Multimedia Appendix 4 provides visual information about Anne4Care.

Use of Anne4Care

This theme refers to the acceptance and actual use of the digital personal assistant Anne4Care by older adult immigrants living with dementia in their own homes. The use of Anne4Care applies to how someone uses Anne4Care, what someone does with Anne4Care, and how health care professionals or families are involved. None of the participants knew or used an assistive technology similar to Anne4Care. All were unfamiliar with the existence of these types of digital assistive technologies. One participant acknowledged that technology like Anne4Care could assist health care professionals. In addition, the health care professionals underlined the potential of Anne4Care for supporting clients at a distance. Although the participants were unfamiliar with technologies like Anne4Care, they were familiar with technologies such as a doorbell with a flashlight or a talking clock, and 1 participant owned a robot vacuum cleaner.

I was so pleased when I saw the result, this robot really cleans everything. You can just leave your home and it will clean everywhere. [Participant L]

Anne4Care was mainly used as a memory assistive tool, for appointments and medication.

It is very useful. Anne4Care tells me when I must take my medication. She helps me to remembers, she is tough and fun. I am very happy with it. [Participant M]

In addition to the agenda function and medication reminders, the game, radio, and newspaper functions of Anne4Care were used or requested by some participants. A health care professional would need to be aware of participants’ requests in order to activate the radio or newspaper functions.

He would like to receive more radio channels. He has a Turkish music channel, but would like to receive Dutch channels as well. We can add these channels easily to the list, I will ask him at a later moment which he would prefer. [Health care professional B]

Thus, the health care professionals and sometimes family were responsible for adding new functions as well as appointments in the agenda, and changes in the medication list. In the beginning, this costed time and was a source of burden. Some assistance to understand Anne4Care was needed at the start. However, after this initial adjustment, most health care professionals and families experienced the tablet as a task relieving as well as stress relieving. Anne4Care gave the reminders so that care partners did not have to keep track of everything during the day. Some participants admitted that continuous reminders from their partners made them angry, but reminders from Anne4Care were received more positively, causing fewer troubling situations at home. Furthermore, some participants preferred to update the agenda themselves if they could learn to work with Anne4Care. This feature is currently not possible with the platform.

I just need a keyboard to add appointments in my agenda. It is important for me to do this myself without any assistance, just some explanation and exercises in the beginning. It would be great if that would work! [Participant E]

After a few months, 3 participants decided to stop using Anne4Care. Two participants did not see the additional value, Anne4Care did not give them any new tools, and 1 participant stopped using them due to illness.

Positive Aspects of Anne4Care

This theme refers to participant experiences regarding the advantages and benefits of Anne4Care. During the interviews, participants were asked to share the positive aspects of Anne4Care. The avatar of Anne4Care was received positively by the participants. Coincidentally, “Anne” is also the Turkish word for mother. Although Anne does not look like a Turkish mom, she gave a feeling that there was someone in their homes because she talks, makes movements, and looks like a nurturing health care professional. Another positive aspect was the choice of language. Most participants chose their native language because Dutch was progressively more difficult to use with age and since the onset of dementia. However, some participants chose the Dutch language intentionally in order to develop and maintain their Dutch language skills.

With regard to positive aspects, the participants commented on the functionalities of Anne4Care: video calling, agenda, medication reminders, games, radio, and newspaper. The most positive aspect of the video calling was the quality and the size of the screen (respectively 10-12.3 inch diagonal). They could see the other person more clearly on the tablet than, for example, on their smartphone. The most positive aspect about Anne4Care was the agenda function with the reminders of appointments and the medication reminder function. These reminders were very essential for the participants’ personal life and health. One health care professional explained that any event or task could be added.

Take for example the timing for their regular prayers. These are essential for someone’s life, and we can easily add these into the agenda. [Health care professional]

Another participant talked about the assistance of Anne4Care in the daily cooking routine.

There are reminders when I need to start cooking, but also already before which groceries I have to purchase. After a while Anne4Care asks: ‘did you turn off the stove?’ That is very helpful and important for me. [Participant K]

The game function was experienced as a fun activity to do during the day. Furthermore, the radio and newspapers provided by Anne4Care were perceived to be valuable. For example, some radio channels with music from their past gave the participants an opportunity to escape from their current time and place. The newspapers were seen as essential to keep up to date with current events; the read-aloud option was an asset.

It is wonderful that the radio and newspapers can provide the news into my home. The news keeps me up to date, and I also know what happens in Turkey where my family is. [Participant H]

Challenges With Anne4Care

After using Anne4Care, the participants were asked about any challenges they experienced. As mentioned, the agenda and medication reminder functions were experienced as positive. However, the video calling option presented challenges. The main challenge was in making a connection with others. A video call required both the caller and receiver to activate Anne4Care. Therefore, all participants had to first send an SMS text message with their mobile phone to request the recipient to activate Anne4Care in order to receive a video call. With this extra step, most participants decided to simply use their mobile device instead of Anne4Care to make a video call. In addition, the newspaper and radio functions do not allow participants to search for radio stations, other than the ones preprogrammed.

I cannot find that newspaper, also the radio channel is absent. When I try to search, I get the massage ‘no stations available’, so there is nothing programmed I think. [Participant B]

Another challenge was real interactions with Anne4Care. The participants expected the possibility to have a conversation, but that was not possible. Furthermore, part of this interaction was the commands to which Anne4Care often does not react. For example, when a participant asked Anne4Care for the time, or to call someone, Anne4Care may not respond. This could have been caused by the fact that Anne4Care did not recognize all the verbal commands in the Turkish language.

We cannot talk together, because she does not respond. Every morning I hear ‘good morning’, but that is it. [Participant B]

The Anne4Care device itself presented some challenges. One challenge was the anxiety among participants for the devices to overheat, which caused the participants to turn off Anne4Care. Another challenge was the requirement for an internet connection at home. Some of the participants did not have internet at the start of the study. Internet access was provided to participants who did not have an internet connection at home during the study period. However, internet access is not free. Some of the participants are strapped for cash. This makes it difficult for them to pay for Anne4Care and an internet connection when the study ends. They have to make difficult trade-offs.

Now we are using Anne4Care for free, but in a couple of weeks there are probably some costs involved. We do not have Internet connection. I only have a mobile phone subscription with which I am happy. But I am also happy with Anne4Care, so the costs make it quite difficult to make a trade-off. [Participant N]

Because Anne4Care is now only available with an internet connection at home, another challenge is to receive messages from Anne4Care when someone is outside. It would be great, for example, to transfer this with the Anne4Care message app on their mobile phone in case they are not at home. According to some participants, Anne4Care is currently a device only for people who are at home most of the day.

Expectations

This theme represents the ideas, wishes, and future plans of the participants for Anne4Care. In the beginning, some of the participants expressed anxiety toward Anne. They turned the tablet off at night because they thought someone could see or listen to them through the device. One of the new plans most of the participants came up with during the use of Anne4Care was the addition of an option to connect quickly to emergency care services. This connection could be activated by the user, but it should also be activated automatically when older adult immigrants living with dementia do not respond to a call within a period of time. Although all participants expected that Anne4Care would improve the health care of people with deteriorating health or dementia, their expectations were higher at the start.

Anne4Care needs to be improved. At the moment, it is too basic and does not meet the needs of some people. We can do more by ourselves, it is a bit of a disappointment. [Participant D]

As mentioned, it is a challenge to use Anne4Care outside the home because the platform requires the internet. Outside the home, it would be helpful if people could receive medication reminders, therefore, this platform should also be compatible with their mobile devices.

It would be great if I could just take Anne4Care outside. Then I have my medication reminders when I am outside, she will tell me to take the medication and I could take them at the right moment. [Participant M]

There were different ideas for new functions on the current Anne4Care tablet. For example, the addition of short movies or documentaries would allow it to be used for entertainment. Additions to the game function and more options, such as multiplayer games allow an older adult to play with a partner. A range of memory or language-related games, and more challenging puzzles would help meet user preferences. The memory and language games were specifically mentioned by several participants and health care professionals, because of the perceived benefits of cognitive engagement for older adult immigrants living with dementia.

Summary of Findings

This study aimed to understand the acceptance of Anne4Care as perceived by older adult immigrants living with dementia using a citizen science approach. This study showed that although older adult immigrants living with dementia had no previous experiences with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by these participants was rather high. Anne4Care was mainly used as a memory assistive tool, for appointments and medication. The use of Anne4Care at first increased the burden of health care professionals and families because health care professionals and sometimes families were responsible for adding new functions as well as appointments in the agenda and changes in the medication list. After the initial effort, most health care professionals and families experienced that Anne4Care reduced their tasks and stress. Contributions of Anne4Care included companionship, help with daily tasks, and opportunities to communicate in multiple languages. On the other hand, some participants expressed anxiety toward the use of Anne4Care and experienced challenges in the use of functionalities, for example, video calling and having real interaction with the avatar. Furthermore, the platform required an internet connection at home and Anne4Care could not be used outside the home.

Reflection on the Literature

The personal digital assistant, Anne4Care, offered companionship for older adult immigrants living with dementia and helped them perform daily activities. Participants mentioned that Anne4Care was very useful as a remember assistive tool, especially for appointments and medications. This finding is consistent with the results of previous studies about technology acceptance in rehabilitation and assistive technologies, and in health care technologies in general [ 28 - 30 ]. Technology acceptance models, for example, the Unified Theory of Acceptance and Use of Technology suggest that if performance expectancy is high, that is, people believe that technologies can help them to achieve their therapeutic goals or achieve their health expectations, this increases the acceptability and actual use of health technologies [ 31 ].

A key finding in this study was that participants believed that they did not have all the conditions to use and adopt Anne4Care for a longer period. These conditions are also known as facilitating conditions in technology acceptance theories, for example, the Unified Theory of Acceptance and Use of Technology [ 31 ]. Facilitating conditions include, for example, internet connection, technical infrastructure, as well as other internal support such as health care professional involvement and supporting staff (eg, availability of engineers to support the system) [ 32 , 33 ]. In our study, participants reported a lack of internet connection as a main limitation for the acceptance of Anne4Care. There is an extensive body of literature in the field of technology acceptance and use that points toward facilitating conditions as an important determinant factor in technology use [ 34 ]. Our result shows that to take full advantage of the potential of digital technologies like Anne4Care, these digital technologies should be accessible also to people of lower socioeconomic status which may have an influence on a person’s autonomy and independence [ 35 ].

In our study, health care professionals were involved in using Anne4Care. These health care professionals had close contact and a trustful and respectful relationship with the participants. They played an important role in giving participants information and instruction regarding Anne4Care, in which they can be supportive of the acceptance of technology. Some participants were concerned about their privacy when using Anne4Care. They turned the tablet off at night because they thought someone could see or listen to them through the device. The important role of the health care professionals in this study warrants discussion. The health care professionals, all with a Turkish background, had the expertise to provide access and involve the participants. They were an important frame of reference and guided the participants whenever they received questions, or observed discomfort or doubts. Furthermore, they were key users of health care technology and had a positive attitude toward implementing the new technology. Research suggests that creating a positive, supportive atmosphere is instrumental to the sustainability of technology use [ 36 ]. Other studies describe that caregiver engagement is important for the everyday use of technology among people with dementia [ 33 , 37 ].

Although in recent years several technologies have been developed for people with dementia and their caregivers to support self-management, in our study none of the participants knew or used an assistive technology comparable to Anne4Care. All were unfamiliar with the existence of these types of technologies. Globally, there is an increasing aging population and more people staying longer in their own homes which has an impact on society and health care [ 38 ]. Although evidence shows that technology for people with dementia seems to stimulate cognitive function and communication skills and reduce loneliness [ 14 , 15 , 39 ], the implementation of technology can also contribute to the burden of health care professionals and informal caregivers. In our study, participants needed the assistance of health care professionals or families, which increased the demand for health care professionals and families. However, after this initial effort, most health care professionals and families experienced that the tablet facilitated their caregiving roles.

Immigrant populations typically have limited involvement in the development, refinement, and implementation of health care technology. This may be reflected in lower levels of adoption of health care technology. The citizens’ science approach within this study was important for this specific target group. A citizen science approach calls for the optimal involvement of the target group as co-researchers. This extra time and dedication was positively experienced by the older adult immigrant group. It was mentioned that it felt like having a real purpose and gave a sense of fulfillment. This collaboration resulted in an alignment of the technology with the needs and practices of the participants. In future studies, the citizen science approach could also be applied in the development of new technologies as this study focused on the refinement of a technology for a specific target population. Citizen science for health and well-being could provide an effective way to involve vulnerable groups within society to participate in research.

Recommendations for Future Research

Future research could examine ways to increase the implementation of technology among older adult immigrants living with dementia and how to develop the technology competencies of clients, caregivers, and health care professionals. Furthermore, for future research conducting mixed method research using both qualitative and quantitative research methods is recommended to provide more insight into the added value of these kinds of assistive technologies for end users and professionals or family members.

Strengths and Limitations

Although we included only 13 older adults, they were involved in the entire process and collaborated with the researchers as well as with the other participants and their health care professionals. All older adults of the 2 organizations with whom the company Anne4Care started collaboration in the Twente region were invited for this study. The 13 participants who were interested in collaborating were all involved in this study. Another strength of our study was the quadruple collaboration. In our citizen science approach, there was active collaboration between the researchers, older adults, health care professionals, and the company that developed Anne4Care. However, we only involved older adults with an early-stage form of dementia, and 5 older adults were not able to join the second interview, due to COVID-19 illness. In addition, assessing exact levels of health literacy would have provided additional information about the influence of these kinds of assistive technologies on health literacy levels. Finally, a care professional was present and served as an interpreter. This may have impacted the quality of the data collected and nuances in the conversations may have been missed. On the other hand, the presence of the care professional ensured a safe and trustworthy environment.

In this study, a qualitative descriptive research design with a naturalistic inquiry has been used. Four themes were found to be related to acceptance of Anne4Care: (1) use of Anne4Care, (2) positive aspects of Anne4Care, (3) challenges with Anne4Care, and (4) expectations. Data saturation regarding the acceptance of Anne4Care was reached. During the data analysis, similar and confirmation of all findings appeared when analyzing and coding the transcripts. However, besides these 4 themes, there might be other factors relevant to the acceptance of digital personal assistant technology for older persons to stay safe in their homes and be able to age in place.

Conclusions

Although older adult immigrants living with dementia had no experience with digital assistive technology specifically, the acceptance of the digital personal assistant, called Anne4Care, by older adult immigrants living with dementia was rather high. In our study, older adult immigrants living with dementia learned and used Anne4Care with the help of family caregivers. Most older adults accepted Anne4Care into their lives in which Anne4Care offered companionship and helped them to perform daily activities. Older adults provided suggestions for the continued development of Anne4Care.

Acknowledgments

The authors thank the company Anne4Care, which made the device available for the research, and the health care professionals and participants for collaborating with us in every research phase and giving valuable insight. This study was powered by the Twente Regional Deal and received financial support from the Central Government’s Regional Budget, the Province of Overijssel, the Region of Twente, and the Twente Board. The funders had no role in study design, data collection and analysis, the decision to publish, or the preparation of the manuscript.

Authors' Contributions

MB, CMvL, TJJO, ES, and ZM conducted the interviews. MB, CMvL, and TJJO performed the analysis of 2 transcripts and compared codes. Peer debriefing took place at weekly meetings with the project team when scientific and organizational aspects were discussed. All authors contributed to writing the paper and have approved the latest version of the paper.

Conflicts of Interest

None declared.

Interview guide for first and second interviews with older adults with an immigration background.

Interview guide for interviews with health care professionals.

Coding tree.

Visual information about Anne4Care.

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Edited by M O'Connell; submitted 23.06.23; peer-reviewed by S Snipes, G Goodall; comments to author 21.11.23; revised version received 15.01.24; accepted 21.02.24; published 19.04.24.

©Marloes Bults, Catharina Margaretha van Leersum, Theodorus Johannes Josef Olthuis, Egbert Siebrand, Zohrah Malik, Lili Liu, Antonio Miguel-Cruz, Jan Seerp Jukema, Marjolein Elisabeth Maria den Ouden. Originally published in JMIR Aging (https://aging.jmir.org), 19.04.2024.

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