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Significance of the Study – Examples and Writing Guide

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Significance of the Study

Definition:

Significance of the study in research refers to the potential importance, relevance, or impact of the research findings. It outlines how the research contributes to the existing body of knowledge, what gaps it fills, or what new understanding it brings to a particular field of study.

In general, the significance of a study can be assessed based on several factors, including:

Originality : The extent to which the study advances existing knowledge or introduces new ideas and perspectives.
Practical relevance: The potential implications of the study for real-world situations, such as improving policy or practice.
Theoretical contribution: The extent to which the study provides new insights or perspectives on theoretical concepts or frameworks.
Methodological rigor : The extent to which the study employs appropriate and robust methods and techniques to generate reliable and valid data.
Social or cultural impact : The potential impact of the study on society, culture, or public perception of a particular issue.

Types of Significance of the Study

The significance of the Study can be divided into the following types:

Theoretical Significance

Theoretical significance refers to the contribution that a study makes to the existing body of theories in a specific field. This could be by confirming, refuting, or adding nuance to a currently accepted theory, or by proposing an entirely new theory.

Practical Significance

Practical significance refers to the direct applicability and usefulness of the research findings in real-world contexts. Studies with practical significance often address real-life problems and offer potential solutions or strategies. For example, a study in the field of public health might identify a new intervention that significantly reduces the spread of a certain disease.

Significance for Future Research

This pertains to the potential of a study to inspire further research. A study might open up new areas of investigation, provide new research methodologies, or propose new hypotheses that need to be tested.

How to Write Significance of the Study

Here’s a guide to writing an effective “Significance of the Study” section in research paper, thesis, or dissertation:

Background : Begin by giving some context about your study. This could include a brief introduction to your subject area, the current state of research in the field, and the specific problem or question your study addresses.
Identify the Gap : Demonstrate that there’s a gap in the existing literature or knowledge that needs to be filled, which is where your study comes in. The gap could be a lack of research on a particular topic, differing results in existing studies, or a new problem that has arisen and hasn’t yet been studied.
State the Purpose of Your Study : Clearly state the main objective of your research. You may want to state the purpose as a solution to the problem or gap you’ve previously identified.
Contributes to the existing body of knowledge.
Addresses a significant research gap.
Offers a new or better solution to a problem.
Impacts policy or practice.
Leads to improvements in a particular field or sector.
Identify Beneficiaries : Identify who will benefit from your study. This could include other researchers, practitioners in your field, policy-makers, communities, businesses, or others. Explain how your findings could be used and by whom.
Future Implications : Discuss the implications of your study for future research. This could involve questions that are left open, new questions that have been raised, or potential future methodologies suggested by your study.

Significance of the Study in Research Paper

The Significance of the Study in a research paper refers to the importance or relevance of the research topic being investigated. It answers the question “Why is this research important?” and highlights the potential contributions and impacts of the study.

The significance of the study can be presented in the introduction or background section of a research paper. It typically includes the following components:

Importance of the research problem: This describes why the research problem is worth investigating and how it relates to existing knowledge and theories.
Potential benefits and implications: This explains the potential contributions and impacts of the research on theory, practice, policy, or society.
Originality and novelty: This highlights how the research adds new insights, approaches, or methods to the existing body of knowledge.
Scope and limitations: This outlines the boundaries and constraints of the research and clarifies what the study will and will not address.

Suppose a researcher is conducting a study on the “Effects of social media use on the mental health of adolescents”.

The significance of the study may be:

“The present study is significant because it addresses a pressing public health issue of the negative impact of social media use on adolescent mental health. Given the widespread use of social media among this age group, understanding the effects of social media on mental health is critical for developing effective prevention and intervention strategies. This study will contribute to the existing literature by examining the moderating factors that may affect the relationship between social media use and mental health outcomes. It will also shed light on the potential benefits and risks of social media use for adolescents and inform the development of evidence-based guidelines for promoting healthy social media use among this population. The limitations of this study include the use of self-reported measures and the cross-sectional design, which precludes causal inference.”

Significance of the Study In Thesis

The significance of the study in a thesis refers to the importance or relevance of the research topic and the potential impact of the study on the field of study or society as a whole. It explains why the research is worth doing and what contribution it will make to existing knowledge.

For example, the significance of a thesis on “Artificial Intelligence in Healthcare” could be:

With the increasing availability of healthcare data and the development of advanced machine learning algorithms, AI has the potential to revolutionize the healthcare industry by improving diagnosis, treatment, and patient outcomes. Therefore, this thesis can contribute to the understanding of how AI can be applied in healthcare and how it can benefit patients and healthcare providers.
AI in healthcare also raises ethical and social issues, such as privacy concerns, bias in algorithms, and the impact on healthcare jobs. By exploring these issues in the thesis, it can provide insights into the potential risks and benefits of AI in healthcare and inform policy decisions.
Finally, the thesis can also advance the field of computer science by developing new AI algorithms or techniques that can be applied to healthcare data, which can have broader applications in other industries or fields of research.

Significance of the Study in Research Proposal

The significance of a study in a research proposal refers to the importance or relevance of the research question, problem, or objective that the study aims to address. It explains why the research is valuable, relevant, and important to the academic or scientific community, policymakers, or society at large. A strong statement of significance can help to persuade the reviewers or funders of the research proposal that the study is worth funding and conducting.

Here is an example of a significance statement in a research proposal:

Title : The Effects of Gamification on Learning Programming: A Comparative Study

Significance Statement:

This proposed study aims to investigate the effects of gamification on learning programming. With the increasing demand for computer science professionals, programming has become a fundamental skill in the computer field. However, learning programming can be challenging, and students may struggle with motivation and engagement. Gamification has emerged as a promising approach to improve students’ engagement and motivation in learning, but its effects on programming education are not yet fully understood. This study is significant because it can provide valuable insights into the potential benefits of gamification in programming education and inform the development of effective teaching strategies to enhance students’ learning outcomes and interest in programming.

Examples of Significance of the Study

Here are some examples of the significance of a study that indicates how you can write this into your research paper according to your research topic:

Research on an Improved Water Filtration System : This study has the potential to impact millions of people living in water-scarce regions or those with limited access to clean water. A more efficient and affordable water filtration system can reduce water-borne diseases and improve the overall health of communities, enabling them to lead healthier, more productive lives.

Study on the Impact of Remote Work on Employee Productivity : Given the shift towards remote work due to recent events such as the COVID-19 pandemic, this study is of considerable significance. Findings could help organizations better structure their remote work policies and offer insights on how to maximize employee productivity, wellbeing, and job satisfaction.

Investigation into the Use of Solar Power in Developing Countries : With the world increasingly moving towards renewable energy, this study could provide important data on the feasibility and benefits of implementing solar power solutions in developing countries. This could potentially stimulate economic growth, reduce reliance on non-renewable resources, and contribute to global efforts to combat climate change.

Research on New Learning Strategies in Special Education : This study has the potential to greatly impact the field of special education. By understanding the effectiveness of new learning strategies, educators can improve their curriculum to provide better support for students with learning disabilities, fostering their academic growth and social development.

Examination of Mental Health Support in the Workplace : This study could highlight the impact of mental health initiatives on employee wellbeing and productivity. It could influence organizational policies across industries, promoting the implementation of mental health programs in the workplace, ultimately leading to healthier work environments.

Evaluation of a New Cancer Treatment Method : The significance of this study could be lifesaving. The research could lead to the development of more effective cancer treatments, increasing the survival rate and quality of life for patients worldwide.

When to Write Significance of the Study

The Significance of the Study section is an integral part of a research proposal or a thesis. This section is typically written after the introduction and the literature review. In the research process, the structure typically follows this order:

Title – The name of your research.
Abstract – A brief summary of the entire research.
Introduction – A presentation of the problem your research aims to solve.
Literature Review – A review of existing research on the topic to establish what is already known and where gaps exist.
Significance of the Study – An explanation of why the research matters and its potential impact.

In the Significance of the Study section, you will discuss why your study is important, who it benefits, and how it adds to existing knowledge or practice in your field. This section is your opportunity to convince readers, and potentially funders or supervisors, that your research is valuable and worth undertaking.

Advantages of Significance of the Study

The Significance of the Study section in a research paper has multiple advantages:

Establishes Relevance: This section helps to articulate the importance of your research to your field of study, as well as the wider society, by explicitly stating its relevance. This makes it easier for other researchers, funders, and policymakers to understand why your work is necessary and worth supporting.
Guides the Research: Writing the significance can help you refine your research questions and objectives. This happens as you critically think about why your research is important and how it contributes to your field.
Attracts Funding: If you are seeking funding or support for your research, having a well-written significance of the study section can be key. It helps to convince potential funders of the value of your work.
Opens up Further Research: By stating the significance of the study, you’re also indicating what further research could be carried out in the future, based on your work. This helps to pave the way for future studies and demonstrates that your research is a valuable addition to the field.
Provides Practical Applications: The significance of the study section often outlines how the research can be applied in real-world situations. This can be particularly important in applied sciences, where the practical implications of research are crucial.
Enhances Understanding: This section can help readers understand how your study fits into the broader context of your field, adding value to the existing literature and contributing new knowledge or insights.

Limitations of Significance of the Study

The Significance of the Study section plays an essential role in any research. However, it is not without potential limitations. Here are some that you should be aware of:

Subjectivity: The importance and implications of a study can be subjective and may vary from person to person. What one researcher considers significant might be seen as less critical by others. The assessment of significance often depends on personal judgement, biases, and perspectives.
Predictability of Impact: While you can outline the potential implications of your research in the Significance of the Study section, the actual impact can be unpredictable. Research doesn’t always yield the expected results or have the predicted impact on the field or society.
Difficulty in Measuring: The significance of a study is often qualitative and can be challenging to measure or quantify. You can explain how you think your research will contribute to your field or society, but measuring these outcomes can be complex.
Possibility of Overstatement: Researchers may feel pressured to amplify the potential significance of their study to attract funding or interest. This can lead to overstating the potential benefits or implications, which can harm the credibility of the study if these results are not achieved.
Overshadowing of Limitations: Sometimes, the significance of the study may overshadow the limitations of the research. It is important to balance the potential significance with a thorough discussion of the study’s limitations.
Dependence on Successful Implementation: The significance of the study relies on the successful implementation of the research. If the research process has flaws or unexpected issues arise, the anticipated significance might not be realized.

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How To Write a Significance Statement for Your Research

A significance statement is an essential part of a research paper. It explains the importance and relevance of the study to the academic community and the world at large. To write a compelling significance statement, identify the research problem, explain why it is significant, provide evidence of its importance, and highlight its potential impact on future research, policy, or practice. A well-crafted significance statement should effectively communicate the value of the research to readers and help them understand why it matters.

Updated on May 4, 2023

a life sciences researcher writing a significance statement for her researcher

A significance statement is a clearly stated, non-technical paragraph that explains why your research matters. It’s central in making the public aware of and gaining support for your research.

Write it in jargon-free language that a reader from any field can understand. Well-crafted, easily readable significance statements can improve your chances for citation and impact and make it easier for readers outside your field to find and understand your work.

Read on for more details on what a significance statement is, how it can enhance the impact of your research, and, of course, how to write one.

What is a significance statement in research?

A significance statement answers the question: How will your research advance scientific knowledge and impact society at large (as well as specific populations)?

You might also see it called a “Significance of the study” statement. Some professional organizations in the STEM sciences and social sciences now recommended that journals in their disciplines make such statements a standard feature of each published article. Funding agencies also consider “significance” a key criterion for their awards.

Read some examples of significance statements from the Proceedings of the National Academy of Sciences (PNAS) here .

Depending upon the specific journal or funding agency’s requirements, your statement may be around 100 words and answer these questions:

1. What’s the purpose of this research?

2. What are its key findings?

3. Why do they matter?

4. Who benefits from the research results?

Readers will want to know: “What is interesting or important about this research?” Keep asking yourself that question.

Where to place the significance statement in your manuscript

Most journals ask you to place the significance statement before or after the abstract, so check with each journal’s guide.

This article is focused on the formal significance statement, even though you’ll naturally highlight your project’s significance elsewhere in your manuscript. (In the introduction, you’ll set out your research aims, and in the conclusion, you’ll explain the potential applications of your research and recommend areas for future research. You’re building an overall case for the value of your work.)

Developing the significance statement

The main steps in planning and developing your statement are to assess the gaps to which your study contributes, and then define your work’s implications and impact.

Identify what gaps your study fills and what it contributes

Your literature review was a big part of how you planned your study. To develop your research aims and objectives, you identified gaps or unanswered questions in the preceding research and designed your study to address them.

Go back to that lit review and look at those gaps again. Review your research proposal to refresh your memory. Ask:

How have my research findings advanced knowledge or provided notable new insights?
How has my research helped to prove (or disprove) a hypothesis or answer a research question?
Why are those results important?

Consider your study’s potential impact at two levels:

What contribution does my research make to my field?
How does it specifically contribute to knowledge; that is, who will benefit the most from it?

Define the implications and potential impact

As you make notes, keep the reasons in mind for why you are writing this statement. Whom will it impact, and why?

The first audience for your significance statement will be journal reviewers when you submit your article for publishing. Many journals require one for manuscript submissions. Study the author’s guide of your desired journal to see its criteria ( here’s an example ). Peer reviewers who can clearly understand the value of your research will be more likely to recommend publication.

Second, when you apply for funding, your significance statement will help justify why your research deserves a grant from a funding agency . The U.S. National Institutes of Health (NIH), for example, wants to see that a project will “exert a sustained, powerful influence on the research field(s) involved.” Clear, simple language is always valuable because not all reviewers will be specialists in your field.

Third, this concise statement about your study’s importance can affect how potential readers engage with your work. Science journalists and interested readers can promote and spread your work, enhancing your reputation and influence. Help them understand your work.

You’re now ready to express the importance of your research clearly and concisely. Time to start writing.

How to write a significance statement: Key elements

When drafting your statement, focus on both the content and writing style.

In terms of content, emphasize the importance, timeliness, and relevance of your research results.
Write the statement in plain, clear language rather than scientific or technical jargon. Your audience will include not just your fellow scientists but also non-specialists like journalists, funding reviewers, and members of the public.

Follow the process we outline below to build a solid, well-crafted, and informative statement.

Get started

Some suggested opening lines to help you get started might be:

The implications of this study are…
Building upon previous contributions, our study moves the field forward because…
Our study furthers previous understanding about…

Alternatively, you may start with a statement about the phenomenon you’re studying, leading to the problem statement.

Include these components

Next, draft some sentences that include the following elements. A good example, which we’ll use here, is a significance statement by Rogers et al. (2022) published in the Journal of Climate .

1. Briefly situate your research study in its larger context . Start by introducing the topic, leading to a problem statement. Here’s an example:

‘Heatwaves pose a major threat to human health, ecosystems, and human systems.”

2. State the research problem.

“Simultaneous heatwaves affecting multiple regions can exacerbate such threats. For example, multiple food-producing regions simultaneously undergoing heat-related crop damage could drive global food shortages.”

3. Tell what your study does to address it.

“We assess recent changes in the occurrence of simultaneous large heatwaves.”

4. Provide brief but powerful evidence to support the claims your statement is making , Use quantifiable terms rather than vague ones (e.g., instead of “This phenomenon is happening now more than ever,” see below how Rogers et al. (2022) explained it). This evidence intensifies and illustrates the problem more vividly:

“Such simultaneous heatwaves are 7 times more likely now than 40 years ago. They are also hotter and affect a larger area. Their increasing occurrence is mainly driven by warming baseline temperatures due to global heating, but changes in weather patterns contribute to disproportionate increases over parts of Europe, the eastern United States, and Asia.

5. Relate your study’s impact to the broader context , starting with its general significance to society—then, when possible, move to the particular as you name specific applications of your research findings. (Our example lacks this second level of application.)

“Better understanding the drivers of weather pattern changes is therefore important for understanding future concurrent heatwave characteristics and their impacts.”

Refine your English

Don’t understate or overstate your findings – just make clear what your study contributes. When you have all the elements in place, review your draft to simplify and polish your language. Even better, get an expert AJE edit . Be sure to use “plain” language rather than academic jargon.

Avoid acronyms, scientific jargon, and technical terms
Use active verbs in your sentence structure rather than passive voice (e.g., instead of “It was found that...”, use “We found...”)
Make sentence structures short, easy to understand – readable
Try to address only one idea in each sentence and keep sentences within 25 words (15 words is even better)
Eliminate nonessential words and phrases (“fluff” and wordiness)

Enhance your significance statement’s impact

Always take time to review your draft multiple times. Make sure that you:

Keep your language focused
Provide evidence to support your claims
Relate the significance to the broader research context in your field

After revising your significance statement, request feedback from a reading mentor about how to make it even clearer. If you’re not a native English speaker, seek help from a native-English-speaking colleague or use an editing service like AJE to make sure your work is at a native level.

Understanding the significance of your study

Your readers may have much less interest than you do in the specific details of your research methods and measures. Many readers will scan your article to learn how your findings might apply to them and their own research.

Different types of significance

Your findings may have different types of significance, relevant to different populations or fields of study for different reasons. You can emphasize your work’s statistical, clinical, or practical significance. Editors or reviewers in the social sciences might also evaluate your work’s social or political significance.

Statistical significance means that the results are unlikely to have occurred randomly. Instead, it implies a true cause-and-effect relationship.

Clinical significance means that your findings are applicable for treating patients and improving quality of life.

Practical significance is when your research outcomes are meaningful to society at large, in the “real world.” Practical significance is usually measured by the study’s effect size . Similarly, evaluators may attribute social or political significance to research that addresses “real and immediate” social problems.

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What is the Significance of the Study?

By DiscoverPhDs
August 25, 2020

what the significance of the study means,
why it’s important to include in your research work,
where you would include it in your paper, thesis or dissertation,
how you write one
and finally an example of a well written section about the significance of the study.

What does Significance of the Study mean?

The significance of the study is a written statement that explains why your research was needed. It’s a justification of the importance of your work and impact it has on your research field, it’s contribution to new knowledge and how others will benefit from it.

Why is the Significance of the Study important?

The significance of the study, also known as the rationale of the study, is important to convey to the reader why the research work was important. This may be an academic reviewer assessing your manuscript under peer-review, an examiner reading your PhD thesis, a funder reading your grant application or another research group reading your published journal paper. Your academic writing should make clear to the reader what the significance of the research that you performed was, the contribution you made and the benefits of it.

How do you write the Significance of the Study?

When writing this section, first think about where the gaps in knowledge are in your research field. What are the areas that are poorly understood with little or no previously published literature? Or what topics have others previously published on that still require further work. This is often referred to as the problem statement.

The introduction section within the significance of the study should include you writing the problem statement and explaining to the reader where the gap in literature is.

Then think about the significance of your research and thesis study from two perspectives: (1) what is the general contribution of your research on your field and (2) what specific contribution have you made to the knowledge and who does this benefit the most.

For example, the gap in knowledge may be that the benefits of dumbbell exercises for patients recovering from a broken arm are not fully understood. You may have performed a study investigating the impact of dumbbell training in patients with fractures versus those that did not perform dumbbell exercises and shown there to be a benefit in their use. The broad significance of the study would be the improvement in the understanding of effective physiotherapy methods. Your specific contribution has been to show a significant improvement in the rate of recovery in patients with broken arms when performing certain dumbbell exercise routines.

This statement should be no more than 500 words in length when written for a thesis. Within a research paper, the statement should be shorter and around 200 words at most.

Significance of the Study: An example

Building on the above hypothetical academic study, the following is an example of a full statement of the significance of the study for you to consider when writing your own. Keep in mind though that there’s no single way of writing the perfect significance statement and it may well depend on the subject area and the study content.

Here’s another example to help demonstrate how a significance of the study can also be applied to non-technical fields:

The significance of this research lies in its potential to inform clinical practices and patient counseling. By understanding the psychological outcomes associated with non-surgical facial aesthetics, practitioners can better guide their patients in making informed decisions about their treatment plans. Additionally, this study contributes to the body of academic knowledge by providing empirical evidence on the effects of these cosmetic procedures, which have been largely anecdotal up to this point.

The statement of the significance of the study is used by students and researchers in academic writing to convey the importance of the research performed; this section is written at the end of the introduction and should describe the specific contribution made and who it benefits.

In the UK, a dissertation, usually around 20,000 words is written by undergraduate and Master’s students, whilst a thesis, around 80,000 words, is written as part of a PhD.

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Qualitative Study

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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 intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypothenar to 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 standalone study, purely relying on qualitative data, or part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and applications of qualitative research.

Qualitative research, at its core, asks 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, qualitative research design is often not linear like quantitative design. 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 complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular 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 essential 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 other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. While qualitative and quantitative approaches are different, they are not necessarily opposites and 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 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.

Introduction
Issues of Concern
Clinical Significance
Enhancing Healthcare Team Outcomes
Review Questions

Publication types

Study Guide

The purpose of qualitative research

Cite this chapter.

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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The Oxford Handbook of Qualitative Research (2nd edn)

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31 Interpretation In Qualitative Research: What, Why, How

Allen Trent, College of Education, University of Wyoming

Jeasik Cho, Department of Educational Studies, University of Wyoming

Published: 02 September 2020
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This chapter addresses a wide range of concepts related to interpretation in qualitative research, 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 and 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?

“ All human knowledge takes the form of interpretation.” In this seemingly simple statement, the late German philosopher Walter Benjamin asserted that all knowledge is mediated and constructed. In doing so, he situates himself as an interpretivist, one who believes that human subjectivity, individuals’ characteristics, feelings, opinions, and experiential backgrounds impact observations, analysis of these observations, and resultant knowledge/truth constructions. Hammersley ( 2013 ) noted,

People—unlike atoms … actively interpret or make sense of their environment and of themselves; the ways in which they do this are shaped by the particular cultures in which they live; and these distinctive cultural orientations will strongly influence not only what they believe but also what they do. (p. 26)

Contrast this perspective with positivist claims that knowledge is based exclusively on external facts, objectively observed and recorded. Interpretivists, then, acknowledge that if positivistic notions of knowledge and truth are inadequate to explain social phenomena, then positivist, hard science approaches to research (i.e., the scientific method and its variants) are also inadequate and can even have a detrimental impact. According to Polyani (1967), “The ideal of exact science would turn out to be fundamentally misleading and possibly a source of devastating fallacies” (as cited in Packer, 2018 , p. 71). So, although the literature often contrasts quantitative and qualitative research as largely a difference in kinds of data employed (numerical vs. linguistic), instead, the primary differentiation is in the foundational, paradigmatic assumptions about truth, knowledge, and objectivity.

This chapter is about interpretation and the strategies that qualitative researchers use to interpret a wide variety of “texts.” Knowledge, we assert, is constructed, both individually (constructivism) and socially (constructionism). We accept this as our starting point. Our aim here is to share our perspective on a broad set of concepts associated with the interpretive, or meaning-making, process. Although it may happen at different times and in different ways, interpretation is part of almost all qualitative research.

Qualitative research is an umbrella term that encompasses a wide array of paradigmatic views, goals, and methods. Still, there are key unifying elements that include a generally constructionist epistemological standpoint, attention to primarily linguistic data, and generally accepted protocols or syntax for conducting research. Typically, qualitative researchers begin with a starting point—a curiosity, a problem in need of solutions, a research question, and/or a desire to better understand a situation from the “native” perspectives of the individuals who inhabit that context. This is what anthropologists call the emic , or insider’s, perspective. Olivier de Sardan ( 2015 ) wrote, “It evokes the meaning that social facts have for the actors concerned. It is opposed to the term etic , which, at times, designates more external or ‘objective’ data, and, at others, the researcher’s interpretive analysis” (p. 65).

From this starting point, researchers determine the appropriate kinds of data to collect, engage in fieldwork as participant observers to gather these data, organize the data, look for patterns, and attempt to understand the emic perspectives while integrating their own emergent interpretations. Researchers construct meaning from data by synthesizing research “findings,” “assertions,” or “theories” that can be shared so that others may also gain insights from the conducted inquiry. This interpretive process has a long history; hermeneutics, the theory of interpretation, blossomed in the 17th century in the form of biblical exegesis (Packer, 2018 ).

Although there are commonalities that cut across most forms of qualitative research, this is not to say that there is an accepted, linear, standardized approach. To be sure, there are an infinite number of variations and nuances in the qualitative research process. For example, some forms of inquiry begin with a firm research question; others start without even a clear focus for study. Grounded theorists begin data analysis and interpretation very early in the research process, whereas some case study researchers, for example, may collect data in the field for a period of time before seriously considering the data and its implications. Some ethnographers may be a part of the context (e.g., observing in classrooms), but they may assume more observer-like roles, as opposed to actively participating in the context. Alternatively, action researchers, in studying issues related to their own practice, are necessarily situated toward the participant end of the participant–observer continuum.

Our focus here is on one integrated part of the qualitative research process, interpretation, the hermeneutic process of collective and individual “meaning making.” Like Willig ( 2017 ), we believe “interpretation is at the heart of qualitative research because qualitative research is concerned with meaning and the process of meaning-making … qualitative data … needs to be given meaning by the researcher” (p. 276). As we discuss throughout this chapter, researchers take a variety of approaches to interpretation in qualitative work. Four general questions guide our explorations:

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?

In what ways can a framework for interpretation strategies support qualitative researchers across multiple methodological and paradigmatic views?

We address each of these guiding questions in our attempt to explicate our interpretation of “interpretation” and, as educational researchers, we include examples from our own work to illustrate some key concepts.

What Is Interpretation, and Why Are Interpretive Strategies Important in Qualitative Research?

Qualitative researchers and those writing about qualitative methods often intertwine the terms analysis and interpretation . For example, Hubbard and Power ( 2003 ) described data analysis as “bringing order, structure, and meaning to the data” (p. 88). To us, this description combines analysis with interpretation. Although there is nothing wrong with this construction, our understanding aligns more closely with Mills’s ( 2018 ) claim that, “put simply, analysis involves summarizing what’s in the data, whereas interpretation involves making sense of—finding meaning in—that data” (p. 176). Hesse-Biber ( 2017 ) also separated out the essential process of interpretation. She described the steps in qualitative analysis and interpretation as data preparation, data exploration, and data reduction (all part of Mills’s “analysis” processes), followed by interpretation (pp. 307–328). Willig ( 2017 ) elaborated: analysis, she claims, is “sober and systematic,” whereas interpretation is associated with “creativity and the imagination … interpretation is seen as stimulating, it is interesting and it can be illuminating” (p. 276). For the purpose of this chapter, we will adhere to Mills’s distinction, understanding analysis as summarizing and organizing and interpretation as meaning making. Unavoidably, these closely related processes overlap and interact, but our focus will be primarily on the more complex of these endeavors, interpretation. Interpretation, in this sense, is in part translation, but translation is not an objective act. Instead, translation necessarily involves selectivity and the ascribing of meaning. Qualitative researchers “aim beneath manifest behavior to the meaning events have for those who experience them” (Eisner, 1991 , p. 35). The presentation of these insider/emic perspectives, coupled with researchers’ own interpretations, is a hallmark of qualitative research.

Qualitative researchers have long borrowed from extant models for fieldwork and interpretation. Approaches from anthropology and the arts have become especially prominent. For example, Eisner’s ( 1991 ) form of qualitative inquiry, educational criticism , draws heavily on accepted models of art criticism. T. Barrett ( 2011 ), an authority on art criticism, described interpretation as a complex set of processes based on a set of principles. We believe many of these principles apply as readily to qualitative research as they do to critique. The following principles, adapted from T. Barrett’s principles of interpretation (2011), inform our examination:

Qualitative phenomena have “aboutness” : All social phenomena have meaning, but meanings in this context can be multiple, even contradictory.

Interpretations are persuasive arguments : All interpretations are arguments, and qualitative researchers, like critics, strive to build strong arguments grounded in the information, or data, available.

Some interpretations are better than others : Barrett noted that “some interpretations are better argued, better grounded with evidence, and therefore more reasonable, more certain, and more acceptable than others.” This contradicts the argument that “all interpretations are equal,” heard in the common refrain, “Well, that’s just your interpretation.”

There can be different, competing, and contradictory interpretations of the same phenomena : As noted at the beginning of this chapter, we acknowledge that subjectivity matters, and, unavoidably, it impacts one’s interpretations. As Barrett noted, “Interpretations are often based on a worldview.”

Interpretations are not (and cannot be) “right,” but instead, they can be more or less reasonable, convincing, and informative : There is never one “true” interpretation, but some interpretations are more compelling than others.

Interpretations can be judged by coherence, correspondence, and inclusiveness : Does the argument/interpretation make sense (coherence)? Does the interpretation fit the data (correspondence)? Have all data been attended to, including outlier data that do not necessarily support identified themes (inclusiveness)?

Interpretation is ultimately a communal endeavor : Initial interpretations may be incomplete, nearsighted, and/or narrow, but eventually these interpretations become richer, broader, and more inclusive. Feminist revisionist history projects are an exemplary case. Over time, the writing, art, and cultural contributions of countless women, previously ignored, diminished, or distorted, have come to be accepted as prominent contributions given serious consideration.

So, meaning is conferred; interpretations are socially constructed arguments; multiple interpretations are to be expected; and some interpretations are better than others. As we discuss later in this chapter, what makes an interpretation “better” often hinges on the purpose/goals of the research in question. Interpretations designed to generate theory, or generalizable rules, will be better for responding to research questions aligned with the aims of more traditional quantitative/positivist research, whereas interpretations designed to construct meanings through social interaction, to generate multiple perspectives, and to represent the context-specific perspectives of the research participants are better for researchers constructing thick, contextually rich descriptions, stories, or narratives. The former relies on more atomistic interpretive strategies, whereas the latter adheres to a more holistic approach (Willis, 2007 ). Both approaches to analysis/interpretation are addressed in more detail later in this chapter.

At this point, readers might ask, Why does interpretation matter, anyway? Our response to this question involves the distinctive nature of interpretation and the ability of the interpretive process to put unique fingerprints on an otherwise relatively static set of data. Once interview data are collected and transcribed (and we realize that even the process of transcription is, in part, interpretive), documents are collected, and observations are recorded, qualitative researchers could just, in good faith and with fidelity, represent the data in as straightforward ways as possible, allowing readers to “see for themselves” by sharing as much actual data (e.g., the transcribed words of the research participants) as possible. This approach, however, includes analysis, what we have defined as summarizing and organizing data for presentation, but it falls short of what we reference and define as interpretation—attempting to explain the meaning of others’ words and actions. According to Lichtman ( 2013 ),

While early efforts at qualitative research might have stopped at description, it is now more generally accepted that a qualitative researcher goes beyond pure description.… Many believe that it is the role of the researcher to bring understanding, interpretation, and meaning. (p. 17)

Because we are fond of the arts and arts-based approaches to qualitative research, an example from the late jazz drummer, Buddy Rich, seems fitting. Rich explains the importance of having the flexibility to interpret: “I don’t think any arranger should ever write a drum part for a drummer, because if a drummer can’t create his own interpretation of the chart, and he plays everything that’s written, he becomes mechanical; he has no freedom.” The same is true for qualitative researchers: without the freedom to interpret, the researcher merely regurgitates, attempting to share with readers/reviewers exactly what the research subjects shared with him or her. It is only through interpretation that the researcher, as collaborator with unavoidable subjectivities, is able to construct unique, contextualized meaning. Interpretation, then, in this sense, is knowledge construction.

In closing this section, we will illustrate the analysis-versus-interpretation distinction with the following transcript excerpt. In this study, the authors (Trent & Zorko, 2006 ) were studying student teaching from the perspective of K–12 students. This quote comes from a high school student in a focus group interview. She is describing a student teacher she had:

The right-hand column contains codes or labels applied to parts of the transcript text. Coding will be discussed in more depth later in this chapter, but for now, note that the codes are mostly summarizing the main ideas of the text, sometimes using the exact words of the research participant. This type of coding is a part of what we have called analysis—organizing and summarizing the data. It is a way of beginning to say “what is” there. As noted, though, most qualitative researchers go deeper. They want to know more than what is; they also ask, What does it mean? This is a question of interpretation.

Specific to the transcript excerpt, researchers might next begin to cluster the early codes into like groups. For example, the teacher “felt targeted,” “assumed kids were going to behave inappropriately,” and appeared to be “overwhelmed.” A researcher might cluster this group of codes in a category called “teacher feelings and perceptions” and may then cluster the codes “could not control class” and “students off task” into a category called “classroom management.” The researcher then, in taking a fresh look at these categories and the included codes, may begin to conclude that what is going on in this situation is that the student teacher does not have sufficient training in classroom management models and strategies and may also be lacking the skills she needs to build relationships with her students. These then would be interpretations, persuasive arguments connected to the study’s data. In this specific example, the researchers might proceed to write a memo about these emerging interpretations. In this memo, they might more clearly define their early categories and may also look through other data to see if there are other codes or categories that align with or overlap this initial analysis. They may write further about their emergent interpretations and, in doing so, may inform future data collection in ways that will allow them to either support or refute their early interpretations. These researchers will also likely find that the processes of analysis and interpretation are inextricably intertwined. Good interpretations very often depend on thorough and thoughtful analyses.

How Do Methodology, Data, and the Researcher/Self Impact Interpretation in Qualitative Research?

Methodological conventions guide interpretation and the use of interpretive strategies. For example, in grounded theory and in similar methodological traditions, “formal analysis begins early in the study and is nearly completed by the end of data collection” (Bogdan & Biklen, 2007 , p. 73). Alternatively, for researchers from other traditions, for example, case study researchers, “formal analysis and theory development [interpretation] do not occur until after the data collection is near complete” (p. 73).

Researchers subscribing to methodologies that prescribe early data analysis and interpretation may employ methods like analytic induction or the constant comparison method. In using analytic induction, researchers develop a rough definition of the phenomena under study; collect data to compare to this rough definition; modify the definition as needed, based on cases that both fit and do not fit the definition; and, finally, establish a clear, universal definition (theory) of the phenomena (Robinson, 1951, cited in Bogdan & Biklen, 2007 , p. 73). Generally, those using a constant comparison approach begin data collection immediately; identify key issues, events, and activities related to the study that then become categories of focus; collect data that provide incidents of these categories; write about and describe the categories, accounting for specific incidents and seeking others; discover basic processes and relationships; and, finally, code and write about the categories as theory, “grounded” in the data (Glaser, 1965 ). Although processes like analytic induction and constant comparison can be listed as steps to follow, in actuality, these are more typically recursive processes in which the researcher repeatedly goes back and forth between the data and emerging analyses and interpretations.

In addition to methodological conventions that prescribe data analysis early (e.g., grounded theory) or later (e.g., case study) in the inquiry process, methodological approaches also impact the general approach to analysis and interpretation. Ellingson ( 2011 ) situated qualitative research methodologies on a continuum spanning “science”-like approaches on one end juxtaposed with “art”-like approaches on the other.

Researchers pursuing a more science-oriented approach seek valid, reliable, generalizable knowledge; believe in neutral, objective researchers; and ultimately claim single, authoritative interpretations. Researchers adhering to these science-focused, postpositivistic approaches may count frequencies, emphasize the validity of the employed coding system, and point to intercoder reliability and random sampling as criteria that bolster the research credibility. Researchers at or near the science end of the continuum might employ analysis and interpretation strategies that include “paired comparisons,” “pile sorts,” “word counts,” identifying “key words in context,” and “triad tests” (Bernard, Wutich, & Ryan, 2017 , pp. 112, 381, 113, 170). These researchers may ultimately seek to develop taxonomies or other authoritative final products that organize and explain the collected data.

For example, in a study we conducted about preservice teachers’ experiences learning to teach second-language learners, the researchers collected larger data sets and used a statistical analysis package to analyze survey data, and the resultant findings included descriptive statistics. These survey results were supported with open-ended, qualitative data. For example, one of the study’s findings was that “a strong majority of candidates (96%) agreed that an immersion approach alone will not guarantee academic or linguistic success for second language learners.” In narrative explanations, one preservice teacher, representative of many others, remarked, “There has to be extra instructional efforts to help their students learn English … they won’t learn English by merely sitting in the classrooms” (Cho, Rios, Trent, & Mayfield, 2012 , p. 75).

Methodologies on the art side of Ellingson’s ( 2011 ) continuum, alternatively, “value humanistic, openly subjective knowledge, such as that embodied in stories, poetry, photography, and painting” (p. 599). Analysis and interpretation in these (often more contemporary) methodological approaches do not strive for “social scientific truth,” but instead are formulated to “enable us to learn about ourselves, each other, and the world through encountering the unique lens of a person’s (or a group’s) passionate rendering of a reality into a moving, aesthetic expression of meaning” (p. 599). For these “artistic/interpretivists, truths are multiple, fluctuating and ambiguous” (p. 599). Methodologies taking more subjective approaches to analysis and interpretation include autoethnography, testimonio, performance studies, feminist theorists/researchers, and others from related critical methodological forms of qualitative practice. More specifically arts-based approaches include poetic inquiry, fiction-based research, music as method, and dance and movement as inquiry (Leavy, 2017 ). Interpretation in these approaches is inherent. For example, “ interpretive poetry is understood as a method of merging the participant’s words with the researcher’s perspective” (Leavy, 2017 , p. 82).

As an example, one of us engaged in an artistic inquiry with a group of students in an art class for elementary teachers. We called it “Dreams as Data” and, among the project aims, we wanted to gather participants’ “dreams for education in the future” and display these dreams in an accessible, interactive, artistic display (see Trent, 2002 ). The intent was not to statistically analyze the dreams/data; instead, it was more universal. We wanted, as Ellingson ( 2011 , p. 599) noted, to use participant responses in ways that “enable us to learn about ourselves, each other, and the world.” The decision was made to leave responses intact and to share the whole/raw data set in the artistic display in ways that allowed the viewers to holistically analyze and interpret for themselves. Additionally, the researcher (Trent, 2002 ) collaborated with his students to construct their own contextually situated interpretations of the data. The following text is an excerpt from one participant’s response:

Almost a century ago, John Dewey eloquently wrote about the need to imagine and create the education that ALL children deserve, not just the richest, the Whitest, or the easiest to teach. At the dawn of this new century, on some mornings, I wake up fearful that we are further away from this ideal than ever.… Collective action, in a critical, hopeful, joyful, anti-racist and pro-justice spirit, is foremost in my mind as I reflect on and act in my daily work.… Although I realize the constraints on teachers and schools in the current political arena, I do believe in the power of teachers to stand next to, encourage, and believe in the students they teach—in short, to change lives. (Trent, 2002 , p. 49)

In sum, researchers whom Ellingson ( 2011 ) characterized as being on the science end of the continuum typically use more detailed or atomistic strategies to analyze and interpret qualitative data, whereas those toward the artistic end most often employ more holistic strategies. Both general approaches to qualitative data analysis and interpretation, atomistic and holistic, will be addressed later in this chapter.

As noted, qualitative researchers attend to data in a wide variety of ways depending on paradigmatic and epistemological beliefs, methodological conventions, and the purpose/aims of the research. These factors impact the kinds of data collected and the ways these data are ultimately analyzed and interpreted. For example, life history or testimonio researchers conduct extensive individual interviews, ethnographers record detailed observational notes, critical theorists may examine documents from pop culture, and ethnomethodologists may collect videotapes of interaction for analysis and interpretation.

In addition to the wide range of data types that are collected by qualitative researchers (and most qualitative researchers collect multiple forms of data), qualitative researchers, again influenced by the factors noted earlier, employ a variety of approaches to analyzing and interpreting data. As mentioned earlier in this chapter, some advocate for a detailed/atomistic, fine-grained approach to data (see, e.g., Bernard et al., 2017 ); others prefer a more broad-based, holistic, “eyeballing” of the data. According to Willis ( 2007 ), “Eyeballers reject the more structured approaches to analysis that break down the data into small units and, from the perspective of the eyeballers, destroy the wholeness and some of the meaningfulness of the data” (p. 298).

Regardless, we assert, as illustrated in Figure 31.1 , that as the process evolves, data collection becomes less prominent later in the process, as interpretation and making sense/meaning of the data becomes more prominent. It is through this emphasis on interpretation that qualitative researchers put their individual imprints on the data, allowing for the emergence of multiple, rich perspectives. This space for interpretation allows researchers the freedom Buddy Rich alluded to in his quote about interpreting musical charts. Without this freedom, Rich noted that the process would simply be “mechanical.” Furthermore, allowing space for multiple interpretations nourishes the perspectives of many others in the community. Writer and theorist Meg Wheatley explained, “Everyone in a complex system has a slightly different interpretation. The more interpretations we gather, the easier it becomes to gain a sense of the whole.” In qualitative research, “there is no ‘getting it right’ because there could be many ‘rights’ ” (as cited in Lichtman, 2013 ).

Increasing Role of Interpretation in Data Analysis

In addition to the roles methodology and data play in the interpretive process, perhaps the most important is the role of the self/the researcher in the interpretive process. According to Lichtman ( 2013 ), “Data are collected, information is gathered, settings are viewed, and realities are constructed through his or her eyes and ears … the qualitative researcher interprets and makes sense of the data” (p. 21). Eisner ( 1991 ) supported the notion of the researcher “self as instrument,” noting that expert researchers know not simply what to attend to, but also what to neglect. He describes the researcher’s role in the interpretive process as combining sensibility , the ability to observe and ascertain nuances, with schema , a deep understanding or cognitive framework of the phenomena under study.

J. Barrett ( 2007 ) described self/researcher roles as “transformations” (p. 418) at multiple points throughout the inquiry process: early in the process, researchers create representations through data generation, conducting observations and interviews and collecting documents and artifacts. Then,

transformation occurs when the “raw” data generated in the field are shaped into data records by the researcher. These data records are produced through organizing and reconstructing the researcher’s notes and transcribing audio and video recordings in the form of permanent records that serve as the “evidentiary warrants” of the generated data. The researcher strives to capture aspects of the phenomenal world with fidelity by selecting salient aspects to incorporate into the data record. (J. Barrett, 2007 , p. 418)

Transformation continues when the researcher codes, categorizes, and explores patterns in the data (the process we call analysis).

Transformations also involve interpreting what the data mean and relating these interpretations to other sources of insight about the phenomena, including findings from related research, conceptual literature, and common experience.… Data analysis and interpretation are often intertwined and rely upon the researcher’s logic, artistry, imagination, clarity, and knowledge of the field under study. (J. Barrett, 2007 , p. 418)

We mentioned the often-blended roles of participation and observation earlier in this chapter. The role(s) of the self/researcher are often described as points along a participant–observer continuum (see, e.g., Bogdan & Biklen, 2007 ). On the far observer end of this continuum, the researcher situates as detached, tries to be inconspicuous (so as not to impact/disrupt the phenomena under study), and approaches the studied context as if viewing it from behind a one-way mirror. On the opposite, participant end, the researcher is completely immersed and involved in the context. It would be difficult for an outsider to distinguish between researcher and subjects. For example, “some feminist researchers and postmodernists take a political stance and have an agenda that places the researcher in an activist posture. These researchers often become quite involved with the individuals they study and try to improve their human condition” (Lichtman, 2013 , p. 17).

We assert that most researchers fall somewhere between these poles. We believe that complete detachment is both impossible and misguided. In doing so, we, along with many others, acknowledge (and honor) the role of subjectivity, the researcher’s beliefs, opinions, biases, and predispositions. Positivist researchers seeking objective data and accounts either ignore the impact of subjectivity or attempt to drastically diminish/eliminate its impact. Even qualitative researchers have developed methods to avoid researcher subjectivity affecting research data collection, analysis, and interpretation. For example, foundational phenomenologist Husserl ( 1913/1962 ) developed the concept of bracketing , what Lichtman describes as “trying to identify your views on the topic and then putting them aside” (2013, p. 22). Like Slotnick and Janesick ( 2011 ), we ultimately claim “it is impossible to bracket yourself” (p. 1358). Instead, we take a balanced approach, like Eisner, understanding that subjectivity allows researchers to produce the rich, idiosyncratic, insightful, and yet data-based interpretations and accounts of lived experience that accomplish the primary purposes of qualitative inquiry. Eisner ( 1991 ) wrote, “Rather than regarding uniformity and standardization as the summum bonum, educational criticism [Eisner’s form of qualitative research] views unique insight as the higher good” (p. 35). That said, we also claim that, just because we acknowledge and value the role of researcher subjectivity, researchers are still obligated to ground their findings in reasonable interpretations of the data. Eisner ( 1991 ) explained:

This appreciation for personal insight as a source of meaning does not provide a license for freedom. Educational critics must provide evidence and reasons. But they reject the assumption that unique interpretation is a conceptual liability in understanding, and they see the insights secured from multiple views as more attractive than the comforts provided by a single right one. (p. 35)

Connected to this participant–observer continuum is the way the researcher positions him- or herself in relation to the “subjects” of the study. Traditionally, researchers, including early qualitative researchers, anthropologists, and ethnographers, referenced those studied as subjects . More recently, qualitative researchers better understand that research should be a reciprocal process in which both researcher and the foci of the research should derive meaningful benefit. Researchers aligned with this thinking frequently use the term participants to describe those groups and individuals included in a study. Going a step further, some researchers view research participants as experts on the studied topic and as equal collaborators in the meaning-making process. In these instances, researchers often use the terms co-researchers or co-investigators .

The qualitative researcher, then, plays significant roles throughout the inquiry process. These roles include transforming data, collaborating with research participants or co-researchers, determining appropriate points to situate along the participant–observer continuum, and ascribing personal insights, meanings, and interpretations that are both unique and justified with data exemplars. Performing these roles unavoidably impacts and changes the researcher. Slotnick and Janesick ( 2011 ) noted, “Since, in qualitative research the individual is the research instrument through which all data are passed, interpreted, and reported, the scholar’s role is constantly evolving as self evolves” (p. 1358).

As we note later, key in all this is for researchers to be transparent about the topics discussed in the preceding section: What methodological conventions have been employed and why? How have data been treated throughout the inquiry to arrive at assertions and findings that may or may not be transferable to other idiosyncratic contexts? And, finally, in what ways has the researcher/self been situated in and impacted the inquiry? Unavoidably, we assert, the self lies at the critical intersection of data and theory, and, as such, two legs of this stool, data and researcher, interact to create the third, theory.

How Do Qualitative Researchers Engage in the Process of Interpretation?

Theorists seem to have a propensity to dichotomize concepts, pulling them apart and placing binary opposites on the far ends of conceptual continuums. Qualitative research theorists are no different, and we have already mentioned some of these continua in this chapter. For example, in the previous section, we discussed the participant–observer continuum. Earlier, we referenced both Willis’s ( 2007 ) conceptualization of atomistic versus holistic approaches to qualitative analysis and interpretation and Ellingson’s ( 2011 ) science–art continuum. Each of these latter two conceptualizations inform how qualitative researchers engage in the process of interpretation.

Willis ( 2007 ) shared that the purpose of a qualitative project might be explained as “what we expect to gain from research” (p. 288). The purpose, or what we expect to gain, then guides and informs the approaches researchers might take to interpretation. Some researchers, typically positivist/postpositivist, conduct studies that aim to test theories about how the world works and/or how people behave. These researchers attempt to discover general laws, truths, or relationships that can be generalized. Others, less confident in the ability of research to attain a single, generalizable law or truth, might seek “local theory.” These researchers still seek truths, but “instead of generalizable laws or rules, they search for truths about the local context … to understand what is really happening and then to communicate the essence of this to others” (Willis, 2007 , p. 291). In both these purposes, researchers employ atomistic strategies in an inductive process in which researchers “break the data down into small units and then build broader and broader generalizations as the data analysis proceeds” (p. 317). The earlier mentioned processes of analytic induction, constant comparison, and grounded theory fit within this conceptualization of atomistic approaches to interpretation. For example, a line-by-line coding of a transcript might begin an atomistic approach to data analysis.

Alternatively, other researchers pursue distinctly different aims. Researchers with an objective description purpose focus on accurately describing the people and context under study. These researchers adhere to standards and practices designed to achieve objectivity, and their approach to interpretation falls within the binary atomistic/holistic distinction.

The purpose of hermeneutic approaches to research is to “understand the perspectives of humans. And because understanding is situational, hermeneutic research tends to look at the details of the context in which the study occurred. The result is generally rich data reports that include multiple perspectives” (Willis, 2007 , p. 293).

Still other researchers see their purpose as the creation of stories or narratives that utilize “a social process that constructs meaning through interaction … it is an effort to represent in detail the perspectives of participants … whereas description produces one truth about the topic of study, storytelling may generate multiple perspectives, interpretations, and analyses by the researcher and participants” (Willis, 2007 , p. 295).

In these latter purposes (hermeneutic, storytelling, narrative production), researchers typically employ more holistic strategies. According to Willis ( 2007 ), “Holistic approaches tend to leave the data intact and to emphasize that meaning must be derived for a contextual reading of the data rather than the extraction of data segments for detailed analysis” (p. 297). This was the case with the Dreams as Data project mentioned earlier.

We understand the propensity to dichotomize, situate concepts as binary opposites, and create neat continua between these polar descriptors. These sorts of reduction and deconstruction support our understandings and, hopefully, enable us to eventually reconstruct these ideas in meaningful ways. Still, in reality, we realize most of us will, and should, work in the middle of these conceptualizations in fluid ways that allow us to pursue strategies, processes, and theories most appropriate for the research task at hand. As noted, Ellingson ( 2011 ) set up another conceptual continuum, but, like ours, her advice was to “straddle multiple points across the field of qualitative methods” (p. 595). She explained, “I make the case for qualitative methods to be conceptualized as a continuum anchored by art and science, with vast middle spaces that embody infinite possibilities for blending artistic, expository, and social scientific ways of analysis and representation” (p. 595).

We explained at the beginning of this chapter that we view analysis as organizing and summarizing qualitative data and interpretation as constructing meaning. In this sense, analysis allows us to describe the phenomena under study. It enables us to succinctly answer what and how questions and ensures that our descriptions are grounded in the data collected. Descriptions, however, rarely respond to questions of why . Why questions are the domain of interpretation, and, as noted throughout this text, interpretation is complex. Gubrium and Holstein ( 2000 ) noted, “Traditionally, qualitative inquiry has concerned itself with what and how questions … qualitative researchers typically approach why questions cautiously, explanation is tricky business” (p. 502). Eisner ( 1991 ) described this distinctive nature of interpretation: “It means that inquirers try to account for [interpretation] what they have given account of ” (p. 35).

Our focus here is on interpretation, but interpretation requires analysis, because without clear understandings of the data and its characteristics, derived through systematic examination and organization (e.g., coding, memoing, categorizing), “interpretations” resulting from inquiry will likely be incomplete, uninformed, and inconsistent with the constructed perspectives of the study participants. Fortunately for qualitative researchers, we have many sources that lead us through analytic processes. We earlier mentioned the accepted processes of analytic induction and the constant comparison method. These detailed processes (see, e.g., Bogdan & Biklen, 2007 ) combine the inextricably linked activities of analysis and interpretation, with analysis more typically appearing as earlier steps in the process and meaning construction—interpretation—happening later.

A wide variety of resources support researchers engaged in the processes of analysis and interpretation. Saldaña ( 2011 ), for example, provided a detailed description of coding types and processes. He showed researchers how to use process coding (uses gerunds, “-ing” words to capture action), in vivo coding (uses the actual words of the research participants/ subjects), descriptive coding (uses nouns to summarize the data topics), versus coding (uses “vs” to identify conflicts and power issues), and values coding (identifies participants’ values, attitudes, and/or beliefs). To exemplify some of these coding strategies, we include an excerpt from a transcript of a meeting of a school improvement committee. In this study, the collaborators were focused on building “school community.” This excerpt illustrates the application of a variety of codes described by Saldaña to this text:

To connect and elaborate the ideas developed in coding, Saldaña ( 2011 ) suggested researchers categorize the applied codes, write memos to deepen understandings and illuminate additional questions, and identify emergent themes. To begin the categorization process, Saldaña recommended all codes be “classified into similar clusters … once the codes have been classified, a category label is applied to them” (p. 97). So, in continuing with the study of school community example coded here, the researcher might create a cluster/category called “Value of Collaboration” and in this category might include the codes “relationships,” “building community,” and “effective strategies.”

Having coded and categorized a study’s various data forms, a typical next step for researchers is to write memos or analytic memos . Writing analytic memos allows the researcher(s) to

set in words your interpretation of the data … an analytic memo further articulates your … thinking processes on what things may mean … as the study proceeds, however, initial and substantive analytic memos can be revisited and revised for eventual integration into the report itself. (Saldaña, 2011 , p. 98)

In the study of student teaching from K–12 students’ perspectives (Trent & Zorko, 2006 ), we noticed throughout our analysis a series of focus group interview quotes coded “names.” The following quote from a high school student is representative of many others:

I think that, ah, they [student teachers] should like know your face and your name because, uh, I don’t like it if they don’t and they’ll just like … cause they’ll blow you off a lot easier if they don’t know, like our new principal is here … he is, like, he always, like, tries to make sure to say hi even to the, like, not popular people if you can call it that, you know, and I mean, yah, and the people that don’t usually socialize a lot, I mean he makes an effort to know them and know their name like so they will cooperate better with him.

Although we did not ask the focus groups a specific question about whether student teachers knew the K–12 students’ names, the topic came up in every focus group interview. We coded the above excerpt and the others “knowing names,” and these data were grouped with others under the category “relationships.” In an initial analytic memo about this, the researchers wrote,

STUDENT TEACHING STUDY—MEMO #3 “Knowing Names as Relationship Building” Most groups made unsolicited mentions of student teachers knowing, or not knowing, their names. We haven’t asked students about this, but it must be important to them because it always seems to come up. Students expected student teachers to know their names. When they did, students noticed and seemed pleased. When they didn’t, students seemed disappointed, even annoyed. An elementary student told us that early in the semester, “she knew our names … cause when we rose [sic] our hands, she didn’t have to come and look at our name tags … it made me feel very happy.” A high schooler, expressing displeasure that his student teacher didn’t know students’ names, told us, “They should like know your name because it shows they care about you as a person. I mean, we know their names, so they should take the time to learn ours too.” Another high school student said that even after 3 months, she wasn’t sure the student teacher knew her name. Another student echoed, “Same here.” Each of these students asserted that this (knowing students’ names) had impacted their relationship with the student teacher. This high school student focus group stressed that a good relationship, built early, directly impacts classroom interaction and student learning. A student explained it like this: “If you get to know each other, you can have fun with them … they seem to understand you more, you’re more relaxed, and learning seems easier.”

As noted in these brief examples, coding, categorizing, and writing memos about a study’s data are all accepted processes for data analysis and allow researchers to begin constructing new understandings and forming interpretations of the studied phenomena. We find the qualitative research literature to be particularly strong in offering support and guidance for researchers engaged in these analytic practices. In addition to those already noted in this chapter, we have found the following resources provide practical, yet theoretically grounded approaches to qualitative data analysis. For more detailed, procedural, or atomistic approaches to data analysis, we direct researchers to Miles and Huberman’s classic 1994 text, Qualitative Data Analysis , and Bernard et al.’s 2017 book Analyzing Qualitative Data: Systematic Approaches. For analysis and interpretation strategies falling somewhere between the atomistic and holistic poles, we suggest Hesse-Biber and Leavy’s ( 2011 ) chapter, “Analysis and Interpretation of Qualitative Data,” in their book, The Practice of Qualitative Research (second edition); Lichtman’s chapter, “Making Meaning From Your Data,” in her 2013 book Qualitative Research in Education: A User’s Guide (third edition); and “Processing Fieldnotes: Coding and Memoing,” a chapter in Emerson, Fretz, and Shaw’s ( 1995 ) book, Writing Ethnographic Fieldwork . Each of these sources succinctly describes the processes of data preparation, data reduction, coding and categorizing data, and writing memos about emergent ideas and findings. For more holistic approaches, we have found Denzin and Lincoln’s ( 2007 ) Collecting and Interpreting Qualitative Materials and Ellis and Bochner’s ( 2000 ) chapter “Autoethnography, Personal Narrative, Reflexivity” to both be very informative. Finally, Leavy’s 2017 book, Method Meets Art: Arts-Based Research Practice , provides support and guidance to researchers engaged in arts-based research.

Even after reviewing the multiple resources for treating data included here, qualitative researchers might still be wondering, But exactly how do we interpret? In the remainder of this section and in the concluding section of this chapter, we more concretely provide responses to this question and, in closing, we propose a framework for researchers to utilize as they engage in the complex, ambiguous, and yet exciting process of constructing meanings and new understandings from qualitative sources.

These meanings and understandings are often presented as theory, but theories in this sense should be viewed more as “guides to perception” as opposed to “devices that lead to the tight control or precise prediction of events” (Eisner, 1991 , p. 95). Perhaps Erickson’s ( 1986 ) concept of assertions is a more appropriate aim for qualitative researchers. He claimed that assertions are declarative statements; they include a summary of the new understandings, and they are supported by evidence/data. These assertions are open to revision and are revised when disconfirming evidence requires modification. Assertions, theories, or other explanations resulting from interpretation in research are typically presented as “findings” in written research reports. Belgrave and Smith ( 2002 ) emphasized the importance of these interpretations (as opposed to descriptions): “The core of the report is not the events reported by the respondent, but rather the subjective meaning of the reported events for the respondent” (p. 248).

Mills ( 2018 ) viewed interpretation as responding to the question, So what? He provided researchers a series of concrete strategies for both analysis and interpretation. Specific to interpretation, Mills (pp. 204–207) suggested a variety of techniques, including the following:

“ Extend the analysis ”: In doing so, researchers ask additional questions about the research. The data appear to say X , but could it be otherwise? In what ways do the data support emergent finding X ? And, in what ways do they not?

“ Connect findings with personal experience ”: Using this technique, researchers share interpretations based on their intimate knowledge of the context, the observed actions of the individuals in the studied context, and the data points that support emerging interpretations, as well as their awareness of discrepant events or outlier data. In a sense, the researcher is saying, “Based on my experiences in conducting this study, this is what I make of it all.”

“ Seek the advice of ‘critical’ friends ”: In doing so, researchers utilize trusted colleagues, fellow researchers, experts in the field of study, and others to offer insights, alternative interpretations, and the application of their own unique lenses to a researcher’s initial findings. We especially like this strategy because we acknowledge that, too often, qualitative interpretation is a “solo” affair.

“ Contextualize findings in the literature ”: This allows researchers to compare their interpretations to those of others writing about and studying the same/similar phenomena. The results of this contextualization may be that the current study’s findings correspond with the findings of other researchers. The results might, alternatively, differ from the findings of other researchers. In either instance, the researcher can highlight his or her unique contributions to our understanding of the topic under study.

“ Turn to theory ”: Mills defined theory as “an analytical and interpretive framework that helps the researcher make sense of ‘what is going on’ in the social setting being studied.” In turning to theory, researchers search for increasing levels of abstraction and move beyond purely descriptive accounts. Connecting to extant or generating new theory enables researchers to link their work to the broader contemporary issues in the field.

Other theorists offer additional advice for researchers engaged in the act of interpretation. Richardson ( 1995 ) reminded us to account for the power dynamics in the researcher–researched relationship and notes that, in doing so, we can allow for oppressed and marginalized voices to be heard in context. Bogdan and Biklen ( 2007 ) suggested that researchers engaged in interpretation revisit foundational writing about qualitative research, read studies related to the current research, ask evaluative questions (e.g., Is what I’m seeing here good or bad?), ask about implications of particular findings/interpretations, think about the audience for interpretations, look for stories and incidents that illustrate a specific finding/interpretation, and attempt to summarize key interpretations in a succinct paragraph. All these suggestions can be pertinent in certain situations and with particular methodological approaches. In the next and closing section of this chapter, we present a framework for interpretive strategies we believe will support, guide, and be applicable to qualitative researchers across multiple methodologies and paradigms.

In What Ways Can a Framework for Interpretation Strategies Support Qualitative Researchers across Multiple Methodological and Paradigmatic Views?

The process of qualitative research is often compared to a journey, one without a detailed itinerary and ending, but with general direction and aims and yet an open-endedness that adds excitement and thrives on curiosity. Qualitative researchers are travelers. They travel physically to field sites; they travel mentally through various epistemological, theoretical, and methodological grounds; they travel through a series of problem-finding, access, data collection, and data analysis processes; and, finally—the topic of this chapter—they travel through the process of making meaning of all this physical and cognitive travel via interpretation.

Although travel is an appropriate metaphor to describe the journey of qualitative researchers, we will also use “travel” to symbolize a framework for qualitative research interpretation strategies. By design, this framework applies across multiple paradigmatic, epistemological, and methodological traditions. The application of this framework is not formulaic or highly prescriptive; it is also not an anything-goes approach. It falls, and is applicable, between these poles, giving concrete (suggested) direction to qualitative researchers wanting to make the most of the interpretations that result from their research and yet allowing the necessary flexibility for researchers to employ the methods, theories, and approaches they deem most appropriate to the research problem(s) under study.

TRAVEL, a Comprehensive Approach to Qualitative Interpretation

In using the word TRAVEL as a mnemonic device, our aim is to highlight six essential concepts we argue all qualitative researchers should attend to in the interpretive process: transparency, reflexivity, analysis, validity, evidence, and literature. The importance of each is addressed here.

Transparency , as a research concept seems, well, transparent. But, too often, we read qualitative research reports and are left with many questions: How were research participants and the topic of study selected/excluded? How were the data collected, when, and for how long? Who analyzed and interpreted these data? A single researcher? Multiple? What interpretive strategies were employed? Are there data points that substantiate these interpretations/findings? What analytic procedures were used to organize the data prior to making the presented interpretations? In being transparent about data collection, analysis, and interpretation processes, researchers allow reviewers/readers insight into the research endeavor, and this transparency leads to credibility for both researcher and researcher’s claims. Altheide and Johnson ( 2011 ) explained,

There is great diversity of qualitative research.… While these approaches differ, they also share an ethical obligation to make public their claims, to show the reader, audience, or consumer why they should be trusted as faithful accounts of some phenomenon. (p. 584)

This includes, they noted, articulating

what the different sources of data were, how they were interwoven, and … how subsequent interpretations and conclusions are more or less closely tied to the various data … the main concern is that the connection be apparent, and to the extent possible, transparent. (p. 590)

In the Dreams as Data art and research project noted earlier, transparency was addressed in multiple ways. Readers of the project write-up were informed that interpretations resulting from the study, framed as themes , were a result of collaborative analysis that included insights from both students and instructor. Viewers of the art installation/data display had the rare opportunity to see all participant responses. In other words, viewers had access to the entire raw data set (see Trent, 2002 ). More frequently, we encounter only research “findings” already distilled, analyzed, and interpreted in research accounts, often by a single researcher. Allowing research consumers access to the data to interpret for themselves in the Dreams project was an intentional attempt at transparency.

Reflexivity , the second of our concepts for interpretive researcher consideration, has garnered a great deal of attention in qualitative research literature. Some have called this increased attention the reflexive turn (see, e.g., Denzin & Lincoln, 2004 ).

Although you can find many meanings for the term reflexivity, it is usually associated with a critical reflection on the practice and process of research and the role of the researcher. It concerns itself with the impact of the researcher on the system and the system on the researcher. It acknowledges the mutual relationships between the researcher and who and what is studied … by acknowledging the role of the self in qualitative research, the researcher is able to sort through biases and think about how they affect various aspects of the research, especially interpretation of meanings. (Lichtman, 2013 , p. 165)

As with transparency, attending to reflexivity allows researchers to attach credibility to presented findings. Providing a reflexive account of researcher subjectivity and the interactions of this subjectivity within the research process is a way for researchers to communicate openly with their audience. Instead of trying to exhume inherent bias from the process, qualitative researchers share with readers the value of having a specific, idiosyncratic positionality. As a result, situated, contextualized interpretations are viewed as an asset, as opposed to a liability.

LaBanca ( 2011 ), acknowledging the often solitary nature of qualitative research, called for researchers to engage others in the reflexive process. Like many other researchers, LaBanca utilized a researcher journal to chronicle reflexive thoughts, explorations, and understandings, but he took it a step farther. Realizing the value of others’ input, LaBanca posts his reflexive journal entries on a blog (what he calls an online reflexivity blog ) and invites critical friends, other researchers, and interested members of the community to audit his reflexive moves, providing insights, questions, and critique that inform his research and study interpretations.

We agree this is a novel approach worth considering. We, too, understand that multiple interpreters will undoubtedly produce multiple interpretations, a richness of qualitative research. So, we suggest researchers consider bringing others in before the production of the report. This could be fruitful in multiple stages of the inquiry process, but especially in the complex, idiosyncratic processes of reflexivity and interpretation. We are both educators and educational researchers. Historically, each of these roles has tended to be constructed as an isolated endeavor, the solitary teacher, the solo researcher/fieldworker. As noted earlier and in the analysis section that follows, introducing collaborative processes to what has often been a solitary activity offers much promise for generating rich interpretations that benefit from multiple perspectives.

Being consciously reflexive throughout our practice as researchers has benefitted us in many ways. In a study of teacher education curricula designed to prepare preservice teachers to support second-language learners, we realized hard truths that caused us to reflect on and adapt our own practices as teacher educators. Reflexivity can inform a researcher at all parts of the inquiry, even in early stages. For example, one of us was beginning a study of instructional practices in an elementary school. The communicated methods of the study indicated that the researcher would be largely an observer. Early fieldwork revealed that the researcher became much more involved as a participant than anticipated. Deep reflection and writing about the classroom interactions allowed the researcher to realize that the initial purpose of the research was not being accomplished, and the researcher believed he was having a negative impact on the classroom culture. Reflexivity in this instance prompted the researcher to leave the field and abandon the project as it was just beginning. Researchers should plan to openly engage in reflexive activities, including writing about their ongoing reflections and subjectivities. Including excerpts of this writing in research account supports our earlier recommendation of transparency.

Early in this chapter, for the purposes of discussion and examination, we defined analysis as “summarizing and organizing” data in a qualitative study and interpretation as “meaning making.” Although our focus has been on interpretation as the primary topic, the importance of good analysis cannot be underestimated, because without it, resultant interpretations are likely incomplete and potentially uninformed. Comprehensive analysis puts researchers in a position to be deeply familiar with collected data and to organize these data into forms that lead to rich, unique interpretations, and yet interpretations that are clearly connected to data exemplars. Although we find it advantageous to examine analysis and interpretation as different but related practices, in reality, the lines blur as qualitative researchers engage in these recursive processes.

We earlier noted our affinity for a variety of approaches to analysis (see, e.g., Hesse-Biber & Leavy, 2011 ; Lichtman, 2013 ; or Saldaña, 2011 ). Emerson et al. ( 1995 ) presented a grounded approach to qualitative data analysis: In early stages, researchers engage in a close, line-by-line reading of data/collected text and accompany this reading with open coding , a process of categorizing and labeling the inquiry data. Next, researchers write initial memos to describe and organize the data under analysis. These analytic phases allow the researcher(s) to prepare, organize, summarize, and understand the data, in preparation for the more interpretive processes of focused coding and the writing up of interpretations and themes in the form of integrative memos .

Similarly, Mills ( 2018 ) provided guidance on the process of analysis for qualitative action researchers. His suggestions for organizing and summarizing data include coding (labeling data and looking for patterns); identifying themes by considering the big picture while looking for recurrent phrases, descriptions, or topics; asking key questions about the study data (who, what, where, when, why, and how); developing concept maps (graphic organizers that show initial organization and relationships in the data); and stating what’s missing by articulating what data are not present (pp. 179–189).

Many theorists, like Emerson et al. ( 1995 ) and Mills ( 2018 ) noted here, provide guidance for individual researchers engaged in individual data collection, analysis, and interpretation; others, however, invite us to consider the benefits of collaboratively engaging in these processes through the use of collaborative research and analysis teams. Paulus, Woodside, and Ziegler ( 2008 ) wrote about their experiences in collaborative qualitative research: “Collaborative research often refers to collaboration among the researcher and the participants. Few studies investigate the collaborative process among researchers themselves” (p. 226).

Paulus et al. ( 2008 ) claimed that the collaborative process “challenged and transformed our assumptions about qualitative research” (p. 226). Engaging in reflexivity, analysis, and interpretation as a collaborative enabled these researchers to reframe their views about the research process, finding that the process was much more recursive, as opposed to following a linear progression. They also found that cooperatively analyzing and interpreting data yielded “collaboratively constructed meanings” as opposed to “individual discoveries.” And finally, instead of the traditional “individual products” resulting from solo research, collaborative interpretation allowed researchers to participate in an “ongoing conversation” (p. 226).

These researchers explained that engaging in collaborative analysis and interpretation of qualitative data challenged their previously held assumptions. They noted,

through collaboration, procedures are likely to be transparent to the group and can, therefore, be made public. Data analysis benefits from an iterative, dialogic, and collaborative process because thinking is made explicit in a way that is difficult to replicate as a single researcher. (Paulus et al., 2008 , p. 236)

They shared that, during the collaborative process, “we constantly checked our interpretation against the text, the context, prior interpretations, and each other’s interpretations” (p. 234).

We, too, have engaged in analysis similar to these described processes, including working on research teams. We encourage other researchers to find processes that fit with the methodology and data of a particular study, use the techniques and strategies most appropriate, and then cite the utilized authority to justify the selected path. We urge traditionally solo researchers to consider trying a collaborative approach. Generally, we suggest researchers be familiar with a wide repertoire of practices. In doing so, they will be in better positions to select and use strategies most appropriate for their studies and data. Succinctly preparing, organizing, categorizing, and summarizing data sets the researcher(s) up to construct meaningful interpretations in the forms of assertions, findings, themes, and theories.

Researchers want their findings to be sound, backed by evidence, and justifiable and to accurately represent the phenomena under study. In short, researchers seek validity for their work. We assert that qualitative researchers should attend to validity concepts as a part of their interpretive practices. We have previously written and theorized about validity, and, in doing so, we have highlighted and labeled what we consider two distinctly different approaches, transactional and transformational (Cho & Trent, 2006 ). We define transactional validity in qualitative research as an interactive process occurring among the researcher, the researched, and the collected data, one that is aimed at achieving a relatively higher level of accuracy. Techniques, methods, and/or strategies are employed during the conduct of the inquiry. These techniques, such as member checking and triangulation, are seen as a medium with which to ensure an accurate reflection of reality (or, at least, participants’ constructions of reality). Lincoln and Guba’s ( 1985 ) widely known notion of trustworthiness in “naturalistic inquiry” is grounded in this approach. In seeking trustworthiness, researchers attend to research credibility, transferability, dependability, and confirmability. Validity approaches described by Maxwell ( 1992 ) as “descriptive” and “interpretive” also proceed in the usage of transactional processes.

For example, in the write-up of a study on the facilitation of teacher research, one of us (Trent, 2012 ) wrote about the use of transactional processes:

“Member checking is asking the members of the population being studied for their reaction to the findings” (Sagor, 2000 , p. 136). Interpretations and findings of this research, in draft form, were shared with teachers (for member checking) on multiple occasions throughout the study. Additionally, teachers reviewed and provided feedback on the final draft of this article. (p. 44)

This member checking led to changes in some resultant interpretations (called findings in this particular study) and to adaptations of others that shaped these findings in ways that made them both richer and more contextualized.

Alternatively, in transformational approaches, validity is not so much something that can be achieved solely by employing certain techniques. Transformationalists assert that because traditional or positivist inquiry is no longer seen as an absolute means to truth in the realm of human science, alternative notions of validity should be considered to achieve social justice, deeper understandings, broader visions, and other legitimate aims of qualitative research. In this sense, it is the ameliorative aspects of the research that achieve (or do not achieve) its validity. Validity is determined by the resultant actions prompted by the research endeavor.

Lather ( 1993 ), Richardson ( 1997 ), and others (e.g., Lenzo, 1995 ; Scheurich, 1996 ) proposed a transgressive approach to validity that emphasized a higher degree of self-reflexivity. For example, Lather proposed a “catalytic validity” described as “the degree to which the research empowers and emancipates the research subjects” (Scheurich, 1996 , p. 4). Beverley ( 2000 , p. 556) proposed testimonio as a qualitative research strategy. These first-person narratives find their validity in their ability to raise consciousness and thus provoke political action to remedy problems of oppressed peoples (e.g., poverty, marginality, exploitation).

We, too, have pursued research with transformational aims. In the earlier mentioned study of preservice teachers’ experiences learning to teach second-language learners (Cho et al., 2012 ), our aims were to empower faculty members, evolve the curriculum, and, ultimately, better serve preservice teachers so that they might better serve English-language learners in their classrooms. As program curricula and activities have changed as a result, we claim a degree of transformational validity for this research.

Important, then, for qualitative researchers throughout the inquiry, but especially when engaged in the process of interpretation, is to determine the type(s) of validity applicable to the study. What are the aims of the study? Providing an “accurate” account of studied phenomena? Empowering participants to take action for themselves and others? The determination of this purpose will, in turn, inform researchers’ analysis and interpretation of data. Understanding and attending to the appropriate validity criteria will bolster researcher claims to meaningful findings and assertions.

Regardless of purpose or chosen validity considerations, qualitative research depends on evidence . Researchers in different qualitative methodologies rely on different types of evidence to support their claims. Qualitative researchers typically utilize a variety of forms of evidence including texts (written notes, transcripts, images, etc.), audio and video recordings, cultural artifacts, documents related to the inquiry, journal entries, and field notes taken during observations of social contexts and interactions. Schwandt ( 2001 ) wrote,

Evidence is essential to justification, and justification takes the form of an argument about the merit(s) of a given claim. It is generally accepted that no evidence is conclusive or unassailable (and hence, no argument is foolproof). Thus, evidence must often be judged for its credibility, and that typically means examining its source and the procedures by which it was produced [thus the need for transparency discussed earlier]. (p. 82)

Altheide and Johnson ( 2011 ) drew a distinction between evidence and facts:

Qualitative researchers distinguish evidence from facts. Evidence and facts are similar but not identical. We can often agree on facts, e.g., there is a rock, it is harder than cotton candy. Evidence involves an assertion that some facts are relevant to an argument or claim about a relationship. Since a position in an argument is likely tied to an ideological or even epistemological position, evidence is not completely bound by facts, but it is more problematic and subject to disagreement. (p. 586)

Inquirers should make every attempt to link evidence to claims (or findings, interpretations, assertions, conclusions, etc.). There are many strategies for making these connections. Induction involves accumulating multiple data points to infer a general conclusion. Confirmation entails directly linking evidence to resultant interpretations. Testability/falsifiability means illustrating that evidence does not necessarily contradict the claim/interpretation and so increases the credibility of the claim (Schwandt, 2001 ). In the study about learning to teach second-language learners, for example, a study finding (Cho et al., 2012 ) was that “as a moral claim , candidates increasingly [in higher levels of the teacher education program] feel more responsible and committed to … [English language learners]” (p. 77). We supported this finding with a series of data points that included the following preservice teacher response: “It is as much the responsibility of the teacher to help teach second-language learners the English language as it is our responsibility to teach traditional English speakers to read or correctly perform math functions.” Claims supported by evidence allow readers to see for themselves and to both examine researcher assertions in tandem with evidence and form further interpretations of their own.

Some postmodernists reject the notion that qualitative interpretations are arguments based on evidence. Instead, they argue that qualitative accounts are not intended to faithfully represent that experience, but instead are designed to evoke some feelings or reactions in the reader of the account (Schwandt, 2001 ). We argue that, even in these instances where transformational validity concerns take priority over transactional processes, evidence still matters. Did the assertions accomplish the evocative aims? What evidence/arguments were used to evoke these reactions? Does the presented claim correspond with the study’s evidence? Is the account inclusive? In other words, does it attend to all evidence or selectively compartmentalize some data while capitalizing on other evidentiary forms?

Researchers, we argue, should be both transparent and reflexive about these questions and, regardless of research methodology or purpose, should share with readers of the account their evidentiary moves and aims. Altheide and Johnson ( 2011 ) called this an evidentiary narrative and explain:

Ultimately, evidence is bound up with our identity in a situation.… An “evidentiary narrative” emerges from a reconsideration of how knowledge and belief systems in everyday life are tied to epistemic communities that provide perspectives, scenarios, and scripts that reflect symbolic and social moral orders. An “evidentiary narrative” symbolically joins an actor, an audience, a point of view (definition of a situation), assumptions, and a claim about a relationship between two or more phenomena. If any of these factors are not part of the context of meaning for a claim, it will not be honored, and thus, not seen as evidence. (p. 686)

In sum, readers/consumers of a research account deserve to know how evidence was treated and viewed in an inquiry. They want and should be aware of accounts that aim to evoke versus represent, and then they can apply their own criteria (including the potential transferability to their situated context). Renowned ethnographer and qualitative research theorist Harry Wolcott ( 1990 ) urged researchers to “let readers ‘see’ for themselves” by providing more detail rather than less and by sharing primary data/evidence to support interpretations. In the end, readers do not expect perfection. Writer Eric Liu ( 2010 ) explained, “We don’t expect flawless interpretation. We expect good faith. We demand honesty.”

Last, in this journey through concepts we assert are pertinent to researchers engaged in interpretive processes, we include attention to the literature . In discussing literature, qualitative researchers typically mean publications about the prior research conducted on topics aligned with or related to a study. Most often, this research/literature is reviewed and compiled by researchers in a section of the research report titled “Literature Review.” It is here we find others’ studies, methods, and theories related to our topics of study, and it is here we hope the assertions and theories that result from our studies will someday reside.

We acknowledge the value of being familiar with research related to topics of study. This familiarity can inform multiple phases of the inquiry process. Understanding the extant knowledge base can inform research questions and topic selection, data collection and analysis plans, and the interpretive process. In what ways do the interpretations from this study correspond with other research conducted on this topic? Do findings/interpretations corroborate, expand, or contradict other researchers’ interpretations of similar phenomena? In any of these scenarios (correspondence, expansion, contradiction), new findings and interpretations from a study add to and deepen the knowledge base, or literature, on a topic of investigation.

For example, in our literature review for the study of student teaching, we quickly determined that the knowledge base and extant theories related to the student teaching experience were immense, but also quickly realized that few, if any, studies had examined student teaching from the perspective of the K–12 students who had the student teachers. This focus on the literature related to our topic of student teaching prompted us to embark on a study that would fill a gap in this literature: Most of the knowledge base focused on the experiences and learning of the student teachers themselves. Our study, then, by focusing on the K–12 students’ perspectives, added literature/theories/assertions to a previously untapped area. The “literature” in this area (at least we would like to think) is now more robust as a result.

In another example, a research team (Trent et al., 2003 ) focused on institutional diversity efforts, mined the literature, found an appropriate existing (a priori) set of theories/assertions, and then used the existing theoretical framework from the literature as a framework to analyze data, in this case, a variety of institutional activities related to diversity.

Conducting a literature review to explore extant theories on a topic of study can serve a variety of purposes. As evidenced in these examples, consulting the literature/extant theory can reveal gaps in the literature. A literature review might also lead researchers to existing theoretical frameworks that support analysis and interpretation of their data (as in the use of the a priori framework example). Finally, a review of current theories related to a topic of inquiry might confirm that much theory already exists, but that further study may add to, bolster, and/or elaborate on the current knowledge base.

Guidance for researchers conducting literature reviews is plentiful. Lichtman ( 2013 ) suggested researchers conduct a brief literature review, begin research, and then update and modify the literature review as the inquiry unfolds. She suggested reviewing a wide range of related materials (not just scholarly journals) and additionally suggested that researchers attend to literature on methodology, not just the topic of study. She also encouraged researchers to bracket and write down thoughts on the research topic as they review the literature, and, important for this chapter, that researchers “integrate your literature review throughout your writing rather than using a traditional approach of placing it in a separate chapter” (p. 173).

We agree that the power of a literature review to provide context for a study can be maximized when this information is not compartmentalized apart from a study’s findings. Integrating (or at least revisiting) reviewed literature juxtaposed alongside findings can illustrate how new interpretations add to an evolving story. Eisenhart ( 1998 ) expanded the traditional conception of the literature review and discussed the concept of an interpretive review . By taking this interpretive approach, Eisenhart claimed that reviews, alongside related interpretations/findings on a specific topic, have the potential to allow readers to see the studied phenomena in entirely new ways, through new lenses, revealing heretofore unconsidered perspectives. Reviews that offer surprising and enriching perspectives on meanings and circumstances “shake things up, break down boundaries, and cause things (or thinking) to expand” (p. 394). Coupling reviews of this sort with current interpretations will “give us stories that startle us with what we have failed to notice” (p. 395).

In reviews of research studies, it can certainly be important to evaluate the findings in light of established theories and methods [the sorts of things typically included in literature reviews]. However, it also seems important to ask how well the studies disrupt conventional assumptions and help us to reconfigure new, more inclusive, and more promising perspectives on human views and actions. From an interpretivist perspective, it would be most important to review how well methods and findings permit readers to grasp the sense of unfamiliar perspectives and actions. (Eisenhart, 1998 , p. 397)

Though our interpretation-related journey in this chapter nears an end, we are hopeful it is just the beginning of multiple new conversations among ourselves and in concert with other qualitative researchers. Our aims have been to circumscribe interpretation in qualitative research; emphasize the importance of interpretation in achieving the aims of the qualitative project; discuss the interactions of methodology, data, and the researcher/self as these concepts and theories intertwine with interpretive processes; describe some concrete ways that qualitative inquirers engage the process of interpretation; and, finally, provide a framework of interpretive strategies that may serve as a guide for ourselves and other researchers.

In closing, we note that the TRAVEL framework, construed as a journey to be undertaken by researchers engaged in interpretive processes, is not designed to be rigid or prescriptive, but instead is designed to be a flexible set of concepts that will inform researchers across multiple epistemological, methodological, and theoretical paradigms. We chose the concepts of transparency, reflexivity, analysis, validity, evidence, and literature (TRAVEL) because they are applicable to the infinite journeys undertaken by qualitative researchers who have come before and to those who will come after us. As we journeyed through our interpretations of interpretation, we have discovered new things about ourselves and our work. We hope readers also garner insights that enrich their interpretive excursions. Happy travels!

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Published: 23 May 2024

30 years of youth system of care lessons learned – a qualitative study of Hawaiʻi’s partnership with the Substance Abuse and Mental Health Services Administration

Kelsie H. Okamura 1 , 2 ,
David Jackson 2 , 4 ,
Danielle L. Carreira Ching 1 ,
Da Eun Suh 2 ,
Tia L. R. Hartsock 3 ,
Puanani J. Hee 4 &
Scott K. Shimabukuro 4

BMC Health Services Research volume 24 , Article number: 658 ( 2024 ) Cite this article

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The Hawaiʻi State Department of Health, Child and Adolescent Mental Health Division (CAMHD) has maintained a longstanding partnership with Substance Abuse and Mental Health Services Administration (SAMHSA) to enhance capacity and quality of community-based mental health services. The current study explored CAMHD’s history of SAMHSA system of care (SOC) awards and identified common themes, lessons learned, and recommendations for future funding.

Employing a two-phase qualitative approach, the study first conducted content analysis on seven final project reports, identifying themes and lessons learned based on SOC values and principles. Subsequently, interviews were conducted with 11 system leaders in grant projects and SOC award projects within the state. All data from project reports and interview transcripts were independently coded and analyzed using rapid qualitative analysis techniques.

Content validation and interview coding unveiled two content themes, interagency collaboration and youth and family voice, as areas that required long-term and consistent efforts across multiple projects. In addition, two general process themes, connection and continuity, emerged as essential approaches to system improvement work. The first emphasizes the importance of fostering connections in family, community, and culture, as well as within workforce members and child-serving agencies. The second highlights the importance of nurturing continuity throughout the system, from interagency collaboration to individual treatment.

Conclusions

The study provides deeper understanding of system of care evaluations, offering guidance to enhance and innovate youth mental health systems. The findings suggest that aligning state policies with federal guidelines and implementing longer funding mechanisms may alleviate administrative burdens.

Peer Review reports

Youth are disproportionately impacted by mental health disorders with average rates higher than adults in the United States [ 1 ]. This begins early on with one in six children aged two to eight years diagnosed with a mental, behavioral, or developmental disorder and persists over time with one in five youth having experiences with a severe mental health disorder at some point in their life [ 1 , 2 , 3 ]. At the end of 2021, the U.S. Surgeon General declared a youth mental health crisis noting that rates of emergency room visits for suspected suicide attempts had increased in some demographics by more than 50% compared to the same time period in 2019 [ 4 ]. Despite the large and increasing need for services, alarming gaps have been found in access to care and it is estimated that half of youth will not receive adequate treatment, which is detrimental to healthy growth and development into adulthood [ 5 ]. Large barriers to youth mental health care occur at the organizational and community levels where differing priorities across child-serving agencies may contribute to lower rates of youth access to services [ 6 ].

The system of care (SOC) approach was developed in the 1980s as a strategy to address siloed child-serving agencies through an integrated and principle-driven approach to tiered services for youth with social, emotional, and behavioral difficulties [ 7 ]. The SOC core values, informed by the Child and Adolescent Service System Program principles [ 8 ], are that services should be: (a) family and youth driven, (b) community-based, and (c) culturally and linguistically competent. These values are operationalized through guiding principles such as interagency collaboration, care coordination, and partnerships with families and youth [ 7 ]. The SOC approach applies principles to help guide coordinated efforts to support youth whose services intersect multiple child-service agencies (e.g., mental health, judiciary, education, child welfare). Several cross-site studies have evaluated youth SOC efforts over time with differential operational definitions of SOC values and principles [ 7 , 8 , 9 , 10 , 11 ]. Each study indicated the importance of sustainability planning at the outset and aligning infrastructure and service development to meet local system requirements. For example, Brashears and colleagues noted that having interagency involvement in developing and implementing shared administrative processes was a common challenge [ 9 ]. Moreover, fiscal crises, leadership turnover, and methodological concerns for assessing long-term sustainment were noted as barriers in the SOC approach. Indeed, the SOC approach requires commitment and financial resources to succeed.

In 1992, the United States federal government signed into public law the establishment of the Substance Abuse and Mental Health Services Administration (SAMHSA; cf. Congressional public law 102–321) given the disconnect between youth and families’ need for services, the SOC approach, and the variable federal financial priorities. The SAMHSA goal was to support substance abuse and mental health prevention and intervention in the United States through the establishment of a federal funding authority operated under the Department of Health and Human Services. Within SAMHSA, there are three major centers that currently fund prevention and intervention services. The Center for Mental Health Services supports the development of services for adults with serious mental illnesses and youth with serious emotional disturbances through the administration and oversight of SOC expansion awards, cooperative agreements, and mental health services block grant programs (i.e., a discretionary fund to help prevent and treat mental health disorders). The Center for Substance Abuse Prevention develops comprehensive prevention systems through national leadership in policy and programs through promoting effective prevention practices and applying prevention knowledge. Their goals are to build supportive workplaces, schools, and communities, drug-free and crime-free neighborhoods, and positive connections with friends and family. Similarly, the Center for Substance Abuse Treatment seeks to improve and expand existing substance abuse treatment and recovery services. This center administers the Substance Abuse Prevention and Treatment Block Grant Program and supports the free treatment referral service to link clients to community-based substance use disorder treatment. The SAMHSA operates an over ten billion a year budget with $225 million dedicated to children’s mental health and SOC initiatives in 2024 [ 12 ].

The Hawaiʻi State Department of Health Child and Adolescent Mental Health Division (CAMHD) is the state’s Medicaid behavioral health carveout and the primary agency responsible for developing and administering clinical services for approximately 2,000 youth each year. The CAMHD provides care coordination and clinical oversight at seven regional Family Guidance Centers statewide and delivers in-home (e.g., intensive in-home, Multisystemic therapy) and out-of-home (e.g., transitional family home, community-based residential, hospital-based residential) services through 17 community-based contracted agencies. A centralized state office oversees all administrative, clinical, and performance functions including annual reporting of youth served and clinical outcomes (see https://health.hawaii.gov/camhd/annual-reports/ ). The CAMHD has a longstanding history of SAMHSA SOC expansion awards beginning in 1994 and continuing to the present in an almost unbroken succession [ 13 ]. These developments began shortly after a class-action lawsuit was brought against the state (Felix v. Waihee, 1993), when Hawaiʻi was ranked among the lowest in the nation for youth mental health services [ 14 ]. The settlement, referred to as the Felix Consent Decree, resulted in federal oversight that lasted from 1994 to 2004 [ 15 , 16 ]. The federal decree mandated and oversaw the development of a statewide SOC, and in many ways complemented the goals of SAMHSA SOC expansion awards that overlapped with federal oversight and continued for two more decades. The various SOC awards operationalized SOC principles and ranged from filling in gaps within the service continuum to enhancing existing services through trauma-informed care, wraparound care coordination, and improved knowledge management systems.

The purpose of this study is to examine the Hawaiʻi State CAMHD system’s SAMHSA SOC award history to identify common themes, lessons learned, and recommendations for future funding. The first goal was to understand the development and evolution of SOC values and principles (e.g., youth and family voice) within and across each grant. The second goal was to describe and reflect on common themes and lessons learned through the 30 years and seven CAMHD SOC expansion awards. This is the first study to date that examines themes across previous SAMHSA SOC awards from one state’s perspective. There were no a prior hypotheses given the exploratory nature of this study. The intention was to contribute to research and improved practices around effective SOC grant implementation at the federal and state system levels.

This study used a two-phase qualitative approach with (a) content analysis on seven final project reports and (b) key informant interviews with 11 system leaders. Initially, for the final project reports, a matrix template was utilized to summarize data by domains consistent with SAMHSA’s Center for Mental Health Services Infrastructure Development, Prevention, and Mental Health Promotion indicators (e.g., Policy Development, Workforce Development) which would have allowed comparisons across multiple projects and domains. However, after multiple trials to code past project reports into the indicators, the two lead investigators (Okamura, Jackson) opted to use a grounded approach to identifying themes and lessons learned based on SOC values and principles. Initial results from project reports guided the information collected in interviews, which iteratively guided subsequent interviews until saturation and consensus was reached on the final themes.

For the interviews, a purposive sampling strategy was utilized to obtain feedback from system leaders who have had extensive experience within individual grant projects and/or across multiple SOC award projects within the state [ 17 ]. Interview participants included four previous grant project directors and seven system leaders whose roles included regional center chiefs (one who, at the time of data collection, was acting as the statewide chief administrator), clinical supervisors, training specialists, and a performance manager. All interviews were recorded and transcribed, except for one participant who declined to be recorded but whose responses were paraphrased in notes. The lead investigators conducted all interviews. A semi-structured interview was developed and used (see Supplemental File), which evolved during the study to further probe more specific themes that were emerging. Initial interview questions asked participants about what they remembered, lessons learned, and what recommendations they had based on the project. Additional probes were used to obtain their perspectives on areas including the project’s impact on the state’s mental health division and larger system of care, its impact on the specific project’s focus areas, and its impact on the division’s relationship with SAMHSA. In addition, participants were asked about their overall reflections on the SOC awards, thoughts on how they have impacted the system over multiple years, and how they could be best utilized in the future.

All data from project reports and interview transcripts were independently coded by the two lead investigators, who each reviewed every report and transcript. Data were analyzed using rapid qualitative analysis techniques [ 18 ]. Rapid qualitative analysis is well-suited for projects that aim to be completed in one year or less that do not rely on traditional transcription coding [ 19 ]. For this project, main points from interviews were summarized to provide a quick and accessible “sketch” of the data as data were organized and collected. These sketches were organized into a matrix to allow for quick identification of similarities, differences, and trends in responses [ 20 ]. Therefore, reliability calculations such as kappa or intraclass correlations were not appropriate for this method. This study was deemed exempt and non-human subjects research by the Hawaiʻi State Department of Health Institutional Review Board.

System of care principle development and application

The Hawaiʻi State CAMHD has operated seven SAMHSA SOC awards from 1994 to present day (2024) as detailed in Table 1 . Several project directors served multiple SOC awards which provided continuity. Specifically, Kealahou, Kaeru, and Data to Wisdom projects had the same project director, which helped to infuse trauma-informed care and bridge previous work in youth and parent partner services. There was variation in the project foci with some projects focused on developing SOC infrastructure (e.g., care coordination model) and others also focused on developing services (e.g., adaptive behavioral intervention) within the service array. The ʻOhana Project and Hoʻomohala both set foundations for the CAMHD SOC by establishing care coordination, contracted provider agencies, and building the service array. Kealahou, Laulima, and Kaeru projects continued to build the CAMHD SOC while focusing on targeted populations and specialty services. The Cultures of Engagement in Residential Care focused primarily on residential treatment settings and eliminating the use of seclusion and restraint. The Data to Wisdom grant focused on SOC development to infuse data driven decision making, knowledge management, and trauma-informed systems. Project geographic locations also changed over time from specific areas (e.g., urban Honolulu) to the broader overall statewide system.

System of care award themes

Content validation and interview coding revealed two content and two general process themes across the seven projects. Content themes were defined as areas that required long-term and consistent efforts across multiple projects and grants to develop. Content themes included (a) interagency collaboration and (b) youth and family voice. Process themes were defined as essential approaches to system improvement work. The general process themes reflected various aspects of (c) connection and (d) continuity, with more specific sub-themes within those.

Interagency collaboration

The first topic theme reflected the need for continual building of interagency collaboration across every project (see Fig. 1 ). From the first CAMHD SAMHSA award, the ʻOhana project, CAMHD coordinated interagency agreements with other child serving systems such as the Department of Education and Child Welfare Services. These child-serving system partners served as governing and advisory groups for the SOC awards, alongside consistent integration with other direct service provider agencies and academic partnerships to support the SOC. During Kealahou and Laulima, there was an effort to formalize the interagency collaboration through the execution of memoranda of agreements between agencies and targeted strategies to improve system collaboration, such as the multi-agency consent form. The formation of the Hawaiʻi Interagency State Youth Network of Care through revised statute furthered the commitment to interagency collaboration, which CAMHD and project directors have co-chaired. The development of interagency collaboration followed an advisory (e.g., members from other child-serving agencies contributing feedback to project goals and implementation), integration (e.g., formal advisory council and committee established), and leadership (e.g., chairing advisory council, and leading task forces and special projects) pathway for CAMHD. This theme is consistent with SOC values and principles and align with the priorities across funding announcements to build and enhance SOCs. Perceptions of key informants also reinforced the idea that interagency collaboration was a critical aspect of SOC development; however, successful collaboration is challenging to achieve (see Table 2 ).

Hawaiʻi state CAMHD interagency collaboration development

CAMHD = Hawaiʻi State Child and Adolescent Mental Health Division; CERC = Cultures of Engagement in Residential Care; D2W = Data to Wisdom

Youth and family voice

The second topic theme was youth and family voice, which represents the long road to fully integrating family voice from the system to the client treatment level (see Fig. 2 ). Parent and youth integration into governing councils and advisory boards to help guide grant activities began from the first award, the ʻOhana project. Eventually, parent and youth peer partner services became integrated into the treatment team level. There were several community-based organizations, like Hawaiʻi Youth Helping Youth, that supported youth and family voice through identifying and training advocates. These advisory activities continued, with more applied support to individual families and youth occurring in Project Kealahou. During this project, the priority to develop a sustainable infrastructure for youth and parent peer partners supporting individual families began. Medicaid reimbursement was pursued for the first time for youth and parent peer partner services, which continued in negotiations to amend the state plan for approximately 12 years. This reimbursement effort continued into the current SOC award, the Data to Wisdom project, with a focus on developing youth peer partner certification as a step toward successful Medicaid reimbursement. Similar to interagency collaboration, the youth and family voice theme progressed from an advisory role (e.g., having youth and families advise grant activities and goals) to informing service (e.g., hiring youth and parent advocates) to pursuing a standalone service (e.g., full integration of youth and parent peer services).

Informant interviews also shed light on the nuances of increasing family voice. New challenges and opportunities emerged alongside greater incorporation of and respect for youth and parent perspectives. One such challenge with youth and family voice is in building trust across different levels within a treatment team and system of care. Language remains a key moderator of trust building (see Table 2 ). Indeed, the SOC value of youth and family driven and principle of partnership with youth and families were applied differently as youth and parent voice became stronger within the treatment team with the support of peer partners.

Hawaiʻi state CAMHD youth and family voice development

Complementing the content themes were process themes related to how systems work should be accomplished to be successful, based on the experiences and recommendations of key informants. The first general process theme was encapsulated in the concept of “connection,” as it relates to (1) how services should connect youth to their family, community, and culture, (2) how workforce members should be connected to each other, and (3) how child-serving agencies should be connected to each other. Fostering these connections often goes beyond day-to-day roles and responsibilities and requires additional focused and sustained efforts.

Regarding the connection of youth to their family, community, and culture, one staff member noted a need for community-based interventions (see Table 2 ). Additionally, connection through communication and relationship building among workforce members and creating the structures to maintain relationships was described as important. One informant noted the importance of learning collaboratives in the project which created a shared place to connect and learn.

Finally, similar to the content theme of interagency collaboration being a continual endeavor, informants relayed many thoughts about how the system could connect agencies together to be more successful in the goal of system improvement. One leadership member noted the need for venues where legislators and other leaders from organizations to come together regularly to discuss issues (see Table 2 ). The connection not only built trust and clarified roles, but created shared responsibility within the SOC so that not one organization or body was making decisions independently of another.

The second general process theme was summarized in the concept of “continuity.” This theme emerged from comments about the importance of efforts such as (1) ensuring the continuity (sustaining) of interagency collaboration, (2) ensuring the continuity of new initiatives, (3) ensuring greater continuity (increased length) of award time periods, (4) ensuring continuity in the CAMHD model of care, (5) ensuring continuity in trauma-informed care, and (6) ensuring continuity in staffing. Overall, it was conveyed that better care for youth requires continuity throughout the system, from interagency collaboration to individual treatment.

First, ensuring continuity of interagency collaboration refers to the maintenance of the formal structures and relationships beyond a single project. For example, the establishment of Hawaiʻi Interagency State Youth Network of Care secured a platform for tackling issues that crossed agencies and could function independently from the restraints of single award periods (see Table 2 ).

More broadly, informants expressed difficulty in achieving sustainability and the need to ensure the continuity of new initiatives instead of them being a “one-off” or pilot projects. Some informants noted that typical award periods are not long enough to develop and sustain successful initiatives. As seen with the youth and family voice topic domain, it does take longer than a single grant to see any sort of transformational or long-term change.

The CAMHD model of care also emerged as a consistent topic throughout the final reports and interviews. The model of care was perceived as a pendulum swinging from a more intensive care coordination model, aligned with system of care values and care coordination principles, to a more “medical model” and managed care. As one person stated “we need to figure out what is our model…” and another informant noted some history related to care coordination to a medical model (see Table 2 ).

Trauma-informed care was a consistent thread in all SOC awards, and the importance of continuity emerged in interviews. Continuity was critical both at the system level, where consistent efforts needed to be made over multiple grant periods to build a more trauma-informed system, as well as the client level, where addressing a youth’s trauma requires time, patience, and consistency of support from the treatment team. As one person noted:

“it takes time to do trauma-informed care” and “you can only move as fast as the individual is able to move.”

Finally, a consistent challenge was in ensuring continuity in staffing. With limited award periods, staff begin to find other opportunities when funding nears the end and positions have not become permanent. Moreover, the start of new awards is typically delayed because of the challenges in establishing new positions and hiring new staff. A leadership informant noted that transitioning grant staff to new grants or from existing grants can cause disruptions to the system and staff morale.

The current study was a review on 30 years and seven awards given to the Hawaiʻi State Child and Adolescent Mental Health Division by the Substance Abuse and Mental Health Services Administration to expand the system of care. Two major topic themes of interagency collaboration and youth and family voice were identified that aligned with SOC values and principles. Two process themes of connection and continuity weaved throughout other SOC principles such as trauma-informed care. The Hawaiʻi State CAMHD continues to be a leader in SOC expansion despite ongoing administrative and fiscal challenges that common with other SOC expansion efforts [ 9 , 10 ]. Their dedication to SOC values and principles is evident in the investment of resources to start and close multiple awards, build interagency collaboration, and innovate within and across the child-serving system and its agencies.

Building interagency collaboration is one of the most difficult aspects of system improvement [ 9 ]. The CAMHD has needed to constantly invest resources (e.g., funding, personnel, legislation) to meet its goals. Lessons learned from interagency collaboration range from developments in coordinated interagency agreements with other child serving agencies (e.g., Department of Education, Child Welfare Services) which provided inbuilt advisory groups for SOC expansion, to consistent integration with other direct service provider agencies and academic partnerships to support that expansion, and finally through to formalization and strengthening of interagency collaboration through formal agreements and targeted strategies like the universal and multi-agency consent form. Networking within and between child-serving agencies was noted as an important aspect in building interagency collaboration. However, turnover can impact continuity and momentum. Legislation and policies have the potential to sustain collaboration and must be implemented with intention and proper funding to ensure high quality facilitation informed by equitable methods [ 21 ].

Partnering with youth and families has been a consistent theme in successful efforts to expand systems of care in other states, and the CAMHD has sought to continue developing this area through multiple grants despite ongoing challenges [ 9 , 10 ]. Lessons learned from youth and family voice range from the integration of parent and youth into governing councils and advisory boards, identification and training of advocates, and applied support to individual families and youth including the long and continuing work toward Medicaid reimbursement. It is interesting that the progression from youth and family voice informing service to a standalone service is representative of almost two decades of systems work. Systems change is truly a long-game and there have been many efforts to support these changes, including federal legislation and funding priorities (e.g., SAMHSA Office of Behavioral Equity and new funding priorities around marginalized communities). Moreover, updated SAMHSA funding announcements have explicitly called for language around culturally and linguistically appropriate, evidence-informed, recovery-oriented, trauma-informed care that highlights the commitment around SOC values and principles.

From these lessons, several areas for future attention emerged. These included considerations of the state and federal policies that often seem at odds with each other. As one informant noted: “we need to look at how the contracts and procurement is done.” This is particularly pertinent to state procurement laws which make it difficult to initially collaborate with and contract providers without a suitable means of paying them for their time, further complicating and delaying the work. A key leader noted:

I think the state system could really benefit from looking at how to support grants better and how to handle rules maybe differently, and procurement differently, and just be, provide more support…I think the state needs a grant office like a, you know, a university would have and they need to help us.

Moreover, establishing new funding accounts, job descriptions, and personnel management policies intersects divisional, departmental, state, and federal bureaucracies that often contribute to lengthy stalls in completing work and spending funds. For example, for the current SOC award, the project director was hired approximately six months after the notice of award, because the position needed to be established and associated with a new award and account code, despite the person already being in the previous SOC award project director position. Landscaping current federal and state policies on spending, procurement, and community collaboration may help to identify better pathways and strategies to executing federal grants within state infrastructure.

Furthermore, mental and behavioral health payment structures require ongoing attention. Stroul and Manteuffel noted that while award sites reported using a range of financing strategies, increasing Medicaid reimbursement was the most frequent strategy [ 11 ]. However, most strategies were not seen as very effective, and the highest effectiveness ratings were for increasing Medicaid funding, increasing state mental health funding, obtaining and coordinating funds with other systems, and redeploying funds to lower cost service alternatives [ 11 ]. Certification and credentialing processes that are needed for reimbursement are often time-intensive to develop and requirements may not align with health equity and lived experience. For example, in Project Hoʻomohala, a bachelor’s degree was required to hire a peer specialist. However, this requirement excluded many transitioned-age youth with lived experience who were more closely related in age which may have brokered trust and rapport more quickly. Initiatives that compare funding and certification rates and examine empirically the extent to which financing strategies improve service reach are necessary evaluation activities that should be included in SOC awards [ 22 , 23 ].

Programs for targeted populations and complex cases, which allow for flexible scheduling and funding, are also needed. Co-occurring mental health, disabilities, and substance use programs provide holistic care for youth and families. Special populations like racial, ethnic, sexual orientation, and gender/sex minorities that require adapted interventions should be a federal and state funding priority. As one interviewee noted:

Girls matter. Treatment for girls needs to be individualized more so than just, I don’t know, some of the EBS [evidence-based services] stuff you know, and I’m not knocking the EBS stuff, that is important. We need more research about girls. And that is a recommendation…The basic need is huge, so I think the lessons learned, we really do need more flexible funding to be able to support girls in their treatment, girls in their homes.

Improving integration into existing structures like home-based care, primary care, and school-based services, as well as integration of informal supports (e.g., youth peer support), requires continued effort to evolve with the changing managed care landscape. Payment and reimbursement strategies to incentivize practice use and improved clinical outcomes should also be considered.

Several recommendations emerged from the current study for operating future SAMHSA SOC awards in CAMHD and other state systems. First, there was enthusiasm for the focus of SOC awards to include more goals around infrastructure development and sustainment and to avoid “stand-alone” services. For example, one informant noted that “ It’s kind of a problem if you have a stand-alone service with its own team and it’s going to go away when the grant money is gone. ” Indeed, sustainability planning should begin prior to an infrastructure grant application being written to ensure there is a clear sustainable financial plan or objectives to continue pursuing funding for specific initiatives. Integrating procurement and administrative activities as specific and targeted award objectives, while unconventional, will emphasize the disconnect between federal and state procedures and spending priorities. Both state and federal legislators should be aware of funding mechanisms that have the potential to operate well in state government and to champion legislation that would create less bureaucracy in favor of the community. For example, including procurement clauses within federal funding announcements that allow for the federal government to supersede state laws may aid in timely execution of contracts using federal funds. Moreover, creating grants management, contracting, and fiscal positions that sit within procurement and administrative offices at the highest department level will be crucial to more timely execution of grant activities. Second, reliance on within-system historical knowledge is fraught with error. Future SOC awards should include evaluation objectives, like this project, to memorialize previous accomplishments, reflect on shared understanding and inconsistencies, and to archive important SOC activities in legacy documents. The third recommendation is related to communication within and between SOC awards by maintaining staff from one project to another. It is helpful to have ongoing role and responsibility clarification meetings internally and with child-serving system partners to avoid confusion and miscommunication. Learning collaboratives and protected time for project directors to share lessons learned and recommendations would aid in knowledge consolidation between projects. It would also be beneficial to allow for multi-year overlap of federal SOC awards to create continuity and retain employees. As one informant noted:

“And we recruited and hired a lot of really great people, and I think that the challenge becomes, as the grant starts to come to a close, or is nearing its end, that you recognize that people may leave because the positions are time limited. So, to the extent that it’s possible to think about positions for those folks, I feel like that is important.

Trauma-informed care principles are a necessary component of ensuring continuity of care. Trauma-informed care requires active responses in the form of integrating knowledge related to trauma into policies, procedures, and practices as well as careful attention to avoiding re-traumatization and secondary trauma of those involved in systems [ 24 ]. Lessons learned include making changes at the individual and organizational level to ensure that all aspects of care would be both transparent and trauma-informed. As one informant noted:

For example, in meetings, there were things that were being said in, in care coordination meetings, things that were being said that were offensive to the youth peers. And so there was a lot of work to prepare and debrief the youth peers after they were in meetings. We had peers that had previously been in care and saw their, their, their staff that they had worked with in some of our meetings. I mean, and had really negative experiences with them. And so the debriefing and you know, the secondary traumatic stress and the triggering even at the peers was intense. And so there was a lot of work with that that had to be addressed and done.

Guiding principles of trauma-informed care include creating a safety net instilled with trustworthiness and transparency, among others, to build confidence toward motivation for continued engagement [ 25 ]. Moreover, and consistent with interagency collaboration, a trauma-informed child-serving system should create a shared lexicon that speaks within and between agencies to improve navigation for youth and families. One informant noted:

And thinking about the needs of children as complex and they may have needs that span the way government agencies are organized. And so, recognizing that it is on the onus of government or organizations to be set up to better serve families rather than the onus on families to try to navigate really burdensome infrastructure to get the services that they need.

Limitations

The current study is not without limitations. First, the study relied on retrospective accounts of past project final reports and informant interviews. Both sources of information included objective and subjective accounts of previous SAMHSA SOC awards that represent a limited perspective. Moreover, key informants were identified via purposive sampling which may affect generalizability to other systems. Future research may wish to focus on convergence with multiple sources of objective data including financial reports, progress indicators, and any other technical assistance data available. Second, the information sources rely heavily on leadership and a small subgroup of CAMHD staff perspectives. It is unclear the extent to which some of these themes and lessons learned are uniformly understood throughout the various levels and roles within CAMHD and the child serving system. Additionally, the initial content coding design intended to rely on SAMHSA Infrastructure Development, Prevention, and Mental Health Promotion indicators (e.g., Policy Development, Workforce Development) to aid in generalizability to other systems. However, the indicator definitions were difficult to operationalize. For example, the Workforce Development categories contain five indicators that measure the number of organizations, communities, people, changes, and consumer or family members that are trained in, are credentialed or certified, implemented, and/or delivered mental health services. However, these metrics were almost never reported on within final reports and it was unclear how meaningful these metrics were to the system and aligned with SOC values and principles. While this study ultimately chose to use a grounded approach, future studies may wish to carefully think through key indicators to compare within and across systems over time. Despite these limitations, examining SAMHSA SOC awards within one system has the potential to inform how state and federal governments operate funds to support mental health innovation. Additional methods like landscape analysis and policy development could help to address the financial and administrative bureaucracy of operating federal funds in a state government association.

Federal funding is critical to addressing the youth mental health crisis [ 4 ]. The current study examined system of care expansion trends that represented multimillion-dollar investments and decades of work around interagency collaboration and youth and family voice, as well as attempts to build connection and continuity. It is hoped that the lessons learned will aid other systems and future work in being more evidence-informed. Similar delays in award progress and spending stemming from incongruencies between state and federal policies are consistent with previous SOC research and anecdotal reports from others involved in SAMHSA and SOC efforts. Targeted state alignment with federal policies and longer funding mechanisms may aid in ameliorating administrative burden on systems. That said, SAMHSA SOC expansion awards have the potential to fund innovative work that create legacy cultures around SOC values and principles.

Data availability

The dataset used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Child and Adolescent Mental Health Division

Cultures of Engagement in Residential Care

Data to Wisdom

Hawaiʻi Interagency State Youth Network of Care

Substance Abuse and Mental Health Services Administration
System of Care

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This work was supported by the Substance Abuse and Mental Health Services Administration (H79 SM082961). Okamura is also supported by the National Institute on Drug Abuse (L60 DA059132) and the National Institute of General Medical Sciences (U54 GM138062).

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KHO and DJ contributed to the design and analysis of the study as well as interpretation of the results. DS and DLCC reviewed project final reports for discrepancies in themes identified in analyses. KHO drafted the first version of the manuscript. TH and PH provided writing support. DLCC created figures for the manuscript. DS reviewed and edited the manuscript. All authors made a significant contribution to the research and the development of the manuscript and approved the final version for publication. SKS supervised the study.

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Okamura, K.H., Jackson, D., Ching, D.L.C. et al. 30 years of youth system of care lessons learned – a qualitative study of Hawaiʻi’s partnership with the Substance Abuse and Mental Health Services Administration. BMC Health Serv Res 24 , 658 (2024). https://doi.org/10.1186/s12913-024-11114-9

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Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium

Monica Verhofstadt 1 ,
Loïc Moureau 2 ,
Koen Pardon 1 &
Axel Liégeois 2 , 3

BMC Medical Ethics volume 25 , Article number: 60 ( 2024 ) Cite this article

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Introduction

Previous research has explored euthanasia’s ethical dimensions, primarily focusing on general practice and, to a lesser extent, psychiatry, mainly from the viewpoints of physicians and nurses. However, a gap exists in understanding the comprehensive value-based perspectives of other professionals involved in both somatic and psychiatric euthanasia. This paper aims to analyze the interplay among legal, medical, and ethical factors to clarify how foundational values shape the ethical discourse surrounding euthanasia in both somatic and psychiatric contexts. It seeks to explore these dynamics among all healthcare professionals and volunteers in Belgium.

Semi-structured interviews were conducted with 30 Dutch-speaking healthcare workers who had encountered patients requesting euthanasia for psychiatric conditions, in Belgium, from August 2019 to August 2020. Qualitative thematic analysis was applied to the interview transcripts.

Participants identified three pivotal values and virtues: religious values, professional values, and fundamental medical values encompassing autonomy, beneficence, and non-maleficence, linked to compassion, quality care, and justice. These values interwove across four tiers: the patient, the patient’s inner circle, the medical realm, and society at large. Irrespective of their euthanasia stance, participants generally displayed a blend of ethical values across these tiers. Their euthanasia perspective was primarily shaped by value interpretation, significance allocation to key components, and tier weighting. Explicit mention of varying ethical values, potentially indicating distinct stances in favor of or against euthanasia, was infrequent.

The study underscores ethical discourse’s central role in navigating euthanasia’s intricate landscape. Fostering inclusive dialogue, bridging diverse values, supports informed decision-making, nurturing justice, and empathy. Tailored end-of-life healthcare in psychiatry is essential, acknowledging all involved actors’ needs. The study calls for interdisciplinary research to comprehensively grasp euthanasia’s multifaceted dimensions, and guiding policy evolution. While contextualized in Belgium, the implications extend to the broader euthanasia discourse, suggesting avenues for further inquiry and cross-cultural exploration.

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Medical assistance in dying is allowed in 27 jurisdictions in the world and if so, it is mainly restricted to the terminally ill (see BOX 1 in OSF) [ 1 ]. Medical assistance in dying entails that a patient’s death request can be granted via euthanasia , defined as the intentional termination of life by a physician at the patient’s explicit request, which is currently decriminalised in Australia, Belgium, Canada, Colombia, Luxembourg, the Netherlands, Spain, and New Zealand. In addition, it can be granted by means of assisted suicide , also defined as the intentional termination of life by a physician at the patient’s explicit request, but in these cases, the lethal drugs are provided by a physician and self-administered by the patient at a time of the latter’s own choosing (e.g., Australia, Austria, Switzerland, United States). In some countries, not only a physician, but also a nurse practitioner can be involved in the procedure (e.g., Canada, New Zealand).

Euthanasia has been legal in Belgium since 2002, positioning the country as a pioneer in this field with two decades of euthanasia practice [ 2 ]. According to Belgian legislation, individuals can be deemed eligible for euthanasia when they are, among other criteria, in a medically futile state characterized by constant and unbearable physical or psychological suffering resulting from a serious and incurable disorder caused by accident or illness [ 2 ]. Belgium is one of the few countries that does not exclude people from assisted dying who suffer predominantly from irremediable psychiatric conditions (see BOX 2 in OSF for all legal criteria in Belgium). As regards prevalence, euthanasia accounted for up to 3.1% of all registered deaths in 2023 in Belgium [ 3 ]. Whereas most registered euthanasia deaths concerned the terminally ill (approximately 84%), predominantly suffering from cancer, only 48 or 1.4% of euthanasia deaths concerned non-terminally ill adults predominantly suffering from psychiatric conditions. Since euthanasia was legalised, in total 457 such euthanasia cases have been reported, less than 1.5% of all registered euthanasia cases in Belgium [ 3 , 4 , 5 , 6 , 7 , 8 , 9 ].

However, this is only the tip of the iceberg, as there is reason to believe that the total number of requests for euthanasia in Belgium (regardless of outcome), is at least 10 times higher. For instance, recent annual reports from Vonkel, an end-of-life consultation centre in Belgium, revealed around 100 unique patients per year applying for euthanasia for psychiatric reasons. Less than 10% of those euthanasia requests were reported to be carried out [ 10 , 11 , 12 ]. Moreover, a recent survey among psychiatrists working in Flanders, Belgium, revealed that 8 out of 10 respondents had been confronted at least once throughout their career with patients requesting euthanasia for psychiatric reasons [ 13 ]. The survey also showed that, although three-quarters are supportive of not excluding the option of euthanasia for this specific patient group [ 14 ], the majority is hesitant to be actively engaged in a euthanasia procedure [ 13 , 14 ]. The literature ascribed the reluctance to the complexity of euthanasia assessment in this patient group, inherently high in professional and emotional demands [ 15 , 16 , 17 , 18 , 19 ]. The complexity was for a large part described in terms of the practical considerations surrounding euthanasia requests and assessment, e.g., whether and when these patients can meet the legal criteria.

There is thus reason to believe that healthcare workers’ overarching ethical considerations influence their attitudes on euthanasia in general and in the context of psychiatry specifically, and their practice. As empirical in-depth studies are lacking, this area is largely understudied. To date, only two recent qualitative studies among Dutch physicians emphasised the value-based reasons for euthanasia decision-making, but did not [ 20 ] or only summarily [ 21 ] scratch the specific context of psychiatry. Another recent qualitative study among Dutch physicians, including psychiatrists, emphasized the value-based reasons for supportive attitudes towards euthanasia, e.g. the value of self-determination, compassion, fairness, and suicide prevention, versus the value-based reasons for not supporting euthanasia, e.g. the mission of medicine of hope and healing [ 22 ]. Furthermore, a recent systematic review described the main ethical challenges surrounding the euthanasia practice in the context of psychiatry [ 23 ]. However, this ethical debate was mainly concentrated on the permissibility and implementation of euthanasia from a practical-clinical point of view, e.g. whether euthanasia in the context of psychiatry should be permitted, and why the legal requirements can (not) be adequately embedded in the field of psychiatric medicine. How practically and juridically relevant these considerations may be, they remain the outcome of ethical values being weighed up, which means that no single consideration can be considered ethically irrelevant, neutral, or value-free. Moreover, the review was based on articles that have been selected in a timeframe in which sound empirical data regarding euthanasia in the context of psychiatry were largely lacking.

Also, the overarching value-based views of other professionals involved in psychiatric euthanasia practice have not yet been studied. This is striking, as a recent Belgian survey study revealed that that half of the psychiatric nurses (53%) are frequently and directly confronted with such euthanasia requests [ 24 ], but in-depth insights into their value-based views are lacking. Furthermore, there are many more formal caregivers, other than psychiatric nurses, involved in euthanasia assessment procedures. End-of-life centres employ e.g., paramedical personnel such as psychologists, psychiatric nurses for intake and registration purposes, and well-trained volunteer personnel such as buddies, entrusted with the task to help these patients to cope with the euthanasia procedure. In addition, rehabilitation-oriented support groups (REAKIRO) were established to help these patients (and their relatives) in walking the tightrope of life and death [ 25 ]. All of these caregivers may also have an unacknowledged but influential role in these euthanasia assessment procedures, and therefore, an interesting perspective to reflect on euthanasia legislation and practice. Gaining insight into healthcare workers’ ethical considerations related to euthanasia in psychiatry will lay bare the ethical foundations underlying current practice and is important to inform and spark further debate around this extremely thorny issue, and to promote sound ethical analysis.

Hence, the purpose of this research is to explore healthcare workers’ ethical considerations regarding euthanasia in general and euthanasia concerning adults suffering predominantly from psychiatric conditions in particular.

Theoretical research framework

Our research was guided by the framework of ‘critical social constructionism’ [ 26 ], providing a nuanced perspective that diverges from the acknowledgment of an objective reality. This approach intricately examines the interplay of personal, social, and societal dimensions within the phenomena under study. It necessitates an acknowledgment of the layered complexities influencing our understanding of phenomena such as euthanasia, a notion supported by both our prior research [ 27 ] and additional studies [ 23 , 28 ].

Our interpretation of the data was informed by social constructionism, which recognizes the role of internalized societal norms in shaping individuals’ perceptions of reality over time. Furthermore, we embraced a contextualist epistemology [ 29 ], acknowledging the contextual influence on knowledge formation among both researchers and participants. This methodological approach aimed to capture diverse lived experiences (e.g., diversity in clinical and euthanasia trajectories) and perspectives, including varied attitudes toward euthanasia based on specific relationships (e.g., professional healthcare worker or volunteer). Consequently, we maintained a reflexive stance regarding the potential impact of our individual experiences and identities on our analyses and interpretations, as elaborated in the Ethical Considerations section.

Study design

The qualitative research design consisted of semi-structured face-to-face interviews with healthcare workers in Flanders and Brussels, Belgium.

Participants

All participants were Dutch-speaking and had at least one concrete experience with euthanasia requests and procedures concerning adults with psychiatric conditions in the period 2016–2020, either as professional or volunteer healthcare workers. We adopted a broad recruitment approach, with a particular focus on all healthcare providers directly involved in medical practice rather than in managerial or policy-making roles. No further exclusion criteria were employed.

Recruitment and interview procedure

Purposive sampling was used to ensure diversity and heterogeneity in terms of: participants’ affiliation with institutions holding different stances on ‘euthanasia and psychiatry’; being to a different extent confronted with these euthanasia procedures as regards the amount of experiences (sporadically versus regularly); the nature of the experiences (e.g. confronted with or engaged in euthanasia procedures that were still under review or that had been rejected, granted, performed or withdrawn); and their specific role as professional or volunteer healthcare worker.

Participants were recruited via assistance of our contact persons at: (1) the end-of-life consultation centre Vonkel; (2) the Brothers of Charity; (3) the rehabilitation-oriented centre REAKIRO in Louvain; and (4) the Review Belgian Euthanasia Law for psychological suffering (REBEL) group, a group of Belgian physicians (e.g. psychiatrists), therapists (e.g. psychologists) as well as academics who express their concern on euthanasia in the context of psychiatry via the media. Participants were also recruited via a notice on the sites, newsflashes and/or in the online newsletters of LEIF (Life End Information Forum), Recht op Waardig Sterven (the Flemish Right to Die with Dignity Society) and Vlaamse Vereniging voor Psychiatrie (Flemish Psychiatric Association).

Potential participants contacted MV or a study assistant by phone or mail. The patients were then given an information letter and informed consent form that consisted of 2 main parts. All interviews were conducted by MV or a study assistant, who both have experience in conducting interviews on end-of-life topics. Interviews were held at the participant’s location of choice, except for five interviews which were held online via video call by Whereby 14 due to the Covid-19 crisis lockdown regulations. Interviews lasted between 55 min and 2 h, and were audio recorded (the online video interviews were recorded by Whereby’s software and immediately transferred in an mp.3 format).

Measurements

The interview guide (see OSF) contained the following consecutive questions of importance to the present report: (1) What is your personal stance regarding euthanasia as a legalised medical end-of-life option? and (2) What is your personal stance regarding euthanasia in the context of psychiatry?

Data management and analysis

We used a model of sampling-based saturation, namely inductive thematic saturation, that relates to the emergence of new themes (defined as 7 consecutive interviews without new themes) [ 30 ]. We continued to recruit and conduct interviews so that the sample would be heterogenous in terms of socio-demographics, clinical profile, and clinical setting. In particular, our focus was on recruiting individuals with the following profiles: psychologists, male psychiatric nurses and moral consultants/spiritual caregivers employed in residential psychiatric settings ( n = 5).

All interviews were then transcribed verbatim and de-identified by the interviewers.

We made use of hybrid inductive and deductive coding and theme development by means of a 2-staged process. Stage 1 consisted of an inductive data-driven thematic coding procedure.

We made use of these four phases; (1) identification and coding of all transcripts; (2) the placing of the codes in subthemes, i.e., arguments in favour versus critical concerns; (3) the placing of these subthemes in overarching main themes, i.e., different stakeholders (patient/medicine/society); (4) the comparison and discussion of the findings (with all co-authors). In addition to the inductive approach, we also used a deductive, theory-driven template approach during stage 2. We made use of these four phases; 1) the development of an ethical interpretation framework (see OSF). The framework consists of four key concepts, each involving a multitude of ethical concepts: (a) ethical theories and methodologies, (b) ethical values, (c) basic ethical virtues, and (d) dialogue/decision making ethics; 2) the identification of codes that fit the ethical framework and the theory-driven renaming of these codes; 3) the placing of some of the subthemes in an additional main theme; and 4) the comparison and discussion of the findings (with all co-authors).

Ethical considerations

The research team comprised two experienced clinical psychologists, one specializing in euthanasia within the cancer patient population and the other skilled in conducting interviews on this sensitive topic within the adult psychiatric context. Additionally, two ethicists with expertise in assisted dying, including euthanasia, were part of the team. Some authors also have backgrounds in psychiatric practice, including outpatient and residential settings, while others bring expertise through personal experiences. Furthermore, all contributing authors have personal and/or professional connections with individuals navigating death ideation, offering diverse perspectives on euthanasia. Additionally, some authors hold religious beliefs, while others maintain a more agnostic stance. These perspectives vary depending on the predominant viewpoints adopted—whether that of the patient, a close relation, a clinician, an ethicist, or policy stances. To mitigate potential undue influence on data interpretation, three team assemblies were convened. These sessions served to share firsthand encounters from interviews and their outcomes, fostering reflection and deliberation among team members. This proactive measure was implemented to prevent both personal and professional biases from affecting the interpretation of the data.

The main characteristics of the 30 participants are listed in Table 1 . The sample consisted of 16 physicians, 7 other care professionals (ranging from psychiatric nurses to mobile support teams), and 7 volunteers, all of whom were engaged in one or more euthanasia procedures predominantly based on psychiatric conditions.

The participating physicians held various roles regarding the handling of euthanasia requests:

1 physician refused to discuss the request with the patient on principle grounds.

7 physicians managed the clarification of euthanasia requests from their own patients or referred them to colleagues for further clarification.

10 physicians provided one of the two legally required formal advices or an additional advice on the euthanasia request.

5 physicians performed the act of euthanasia.

3 physicians held a more normative, dissuasive stance against euthanasia in the context of psychiatry but were willing to explore and discuss the euthanasia request with the patient.

The sample further included 14 non-physicians, among them members holding one or more roles:

2 members were part of mobile teams providing psychiatric care and support in the patient’s home setting.

3 were psychiatric nurses working either in a general hospital or in a psychiatric residential setting.

2 were Experts by Experience, individuals with a history of mental distress trained to provide support for individuals new to the euthanasia procedure and/or rehabilitation approaches.

3 were buddies, individuals entrusted with assisting and supporting the patient throughout the euthanasia procedure.

3 were moral consultants/spiritual caregiver, tasked with offering various forms of existential guidance and support to patients considering euthanasia, including religious, moral, and/or other perspectives.

5 were consultants at end-of-life information and/or consultation centers responsible for patient intake.

Participants’ ethical considerations regarding euthanasia, in the broadest context of medicine

As can be seen from the coding structure in Table 2 , we ordered coding categories on the level of 1) the individual patient, 2) the patient’s social inner circle, 3) the (para)medical field, and 4) the society. Note that words used verbatim by the interviewees (often interview fragments instead of quotes, as to better illuminate the complexities and nuances of interviewees’ first-hand lived experiences) from the transcribed interviews are incorporated that provide both additional insightful details and reveal the at times interwoven nature of the analysed codes.”

The level of the individual patient

On the level of the individual patient, the following five ethical considerations were distinguished: (1) autonomy, (2) dignity, (3) quality of life, (4) compassion, and (5) the meaning and transformative value of suffering.

First, Autonomy was a recurrent theme in all the interviews. Some participants expressly valued individual autonomy , and more specifically its following two underpinning characteristics: (1) self-determination in terms of the fundamental right for each individual to direct the course of one’s own life, which also includes ‘taking control over the timing and circumstances of one’s end-of-life’, and (2) freedom of choice , as they strongly believed that individuals are free to choose what meaning and purpose they assign to their lives. According to them, as each individual should be enabled ‘to live according to one’s own value system’, so should the ending of one’s life also be congruent with one’s own value system. Hence, in their opinion, euthanasia should remain ‘one of the many options to die’.

Other participants called this individualistic approach of autonomy ‘unrealistic’ or even ‘delusional’, as it shies away from: (1) the relational account of autonomy, in which a true autonomous decision was seen as the outcome of a decision-making process which is shaped by individual, social and contextual components, and (2) the internalised downside of autonomy, as the feeling underpinning many euthanasia requests, namely ‘not wanting to be a burden to others’ may lead to ‘self-sacrifice’ and ‘the duty to die’ under the false pretence of autonomy. In addition, some pointed to the power of susceptibility and subliminality, as human beings are subliminal creatures whose behaviour is continuously influenced on both a subconscious and even conscious level. Consequently, internalised pressure cannot be excluded when a patient requests euthanasia. One psychiatrist even stated that ‘ there exists no such thing as a free will, as human beings are always manipulated in many areas of human life and functioning’ .

“I believe that that there should still be places in society where you could die without considering euthanasia. While many people today are facing dementia, and you almost must…. Interviewer: Yes. “Yes, like how should I deal with it? Should I exit life before it becomes inevitable dementia or something similar? Because I think that in a neo-liberal society, many people internalize the idea that at some point, it becomes a moral duty to step aside. They feel obliged to eliminate themselves. Self-elimination. In a neo-liberal model, as long as you can keep up and contribute, everything is fine. But if you can’t keep up, well, if you cannot fully exercise autonomy, then… Essentially, you should hold your honour and step aside.” (spiritual caregiver)

Second, participants mentioned euthanasia as an option to die with dignity . For those in favour of the Law, euthanasia is considered (1) a ‘dignified way of dying’ when everything that leads up to death, including individual, medical, and social needs and expectations, is consistent with one’s own sense of integrity, belief-system and lifestyle, and (2) a ‘good death’, when referring to the literal meaning of the concept ‘euthanasia’, namely ‘a soft and gentle passing’. Other participants raised concerns on the reference to euthanasia and dignified dying in the same breath, as if “ other ways of dying are not or less dignified ”.

Third, the value of quality of life underpinned the arguments made in favour of the Law on Euthanasia, as (1) life itself should not be prolonged unnecessarily, (2) meaningless suffering should be prevented, and (3) a good life should pertain to all stages in life, from the very beginning until the very end, which is feasible if quality of dying circumstances can be guaranteed. As one buddy stated: “ Living a full and good life implies dying a good death ”. Other participants made use of this value underpinning their argument against euthanasia, based on (1) the “protect-worthiness” of life itself and (2) the suffering that must be considered an inherent feature of the human condition.

Fourth, and seamlessly fitting with the former value, divergent courses also emerged regarding the aspect of how to deal with suffering . Some participants were in favour of euthanasia out of compassion in terms of (1) bringing a kind of relief to the patient when providing her the prospect of an end to the suffering and (2) ending the suffering once it has become ‘useless and meaningless’ and ‘disclosing the limits of the carrying capacity of the self’. Some participants referred to the insufficient degree of quality of life in some patients and valued euthanasia as sort of ‘ compensation for a life gone wrong’.

Others considered the option of euthanasia as compromising patients’ ability to accept, bear and cope with suffering experiences by offering the opportunity ‘to quickly resign from it’.

Some participants referred to the dynamic features and hence, the potential enriching value of suffering. They believed that one can and must revolt against the perception of pointless suffering, as suffering may offer unique opportunities to achieve personal growth through the realisation of self-actualising tendencies amidst the suffering and though all kinds of hardship and adversity in life. Therefore, the real challenge is to support the sufferer to (re)gain the ability to transform the suffering by means of redefining, accepting, and making sense of it. One psychiatrist referred to the Myth of Sisyphus and stated:

A rock that must be pushed up the mountain, which is terrible, and then Sisyphus lets the rock fall back down, and he must start all over again. And what is the purpose of that suffering? Pushing the rock up? It’s absurd, really, but still. I find it so vital, human, uh, yes. That is something that inspires me enormously and often makes me, well, yes, vitality and suffering, suffering is inherent to being, of course, and one can suffer, of course, that is very serious suffering, terrible suffering. I know that. But well, accept suffering, right? I’m not glorifying suffering, no, I don’t belong to that category. Some Catholics do that; the suffering of Christ, we must… No, not at all. Suffering is inherent to life. Interviewer: It’s just more bearable for some than for others. Interviewee: Then it’s our task to make it more bearable. Yes. (…) Look, that sets a dynamic in motion. By dynamic, I also mean movement. A euthanasia request is often rigid. I am for movement. That’s what Eastern philosophy teaches us too, that everything moves, and we must keep that movement and that the question may change or that people may also discover things. Or indeed, a suffering that is even more exposed, but on which one can then work. There is still much to do, yes, before the ultimate and final act of euthanasia, by a doctor for all sakes, should be considered. (psychiatrist)

The level of the patient’s inner circle

On the level of the social inner circle, the following three ethical considerations were distinguished: (1) involvement, (2) connectedness, and (3) attentiveness.

Some participants stressed that euthanasia can only be a soft and thus ‘good’ way of dying, if the patient’s social inner circle can be involved in the euthanasia procedure and if sufficient support to them can be provided. All participants in favour of the legal framework on euthanasia echoed the importance of the social circle being involved in an early stage of the euthanasia procedure, as the prospect of the end of life may challenge a patient’s ability of staying and feeling connected . If the euthanasia request is to be carried out, it offers a unique opportunity for both the patient and her social inner circle of consciously being present and sharing goodbyes. Other participants considered this reasoning as potentially deceiving, as concern was raised regarding the trap of false assumptions, in terms of words being left unspoken and the bottling up of one’s own needs for the sake of the other.

As the third doctor, I was asked to provide advice about someone, and the [adult child] was present, a charming [adult child]. The [adult child] was also very friendly but didn’t say much. The man explained why he himself wanted euthanasia and so on. To be honest, at first, I thought, “Well, this won’t take long,” because there were many arguments and reports I had received, but as the conversation went on, I started to feel something different. It turned into a very long conversation, during which the [adult child] also had their say. In short, the father believed that he couldn’t burden his children. He was a kind man who knew what he wanted, and his children were inclined to follow his idea, to follow his vision. However, the children thought, “Yes, we are actually going to agree with our father, and we’ll allow it,” but deep down, they still wanted to take good care of him. The father didn’t want them to take care of him, and there were many other things, but after that long conversation with the [adult child] and the father, and everything else, like, “We’ll still celebrate Christmas together,” there was a complete turnaround. The other physicians involved accepted this very well, and they said, “Okay, for us, it wasn’t clear. (physician)

In addition, concern was raised regarding the inner circle’s respect of individual patient autonomy and freedom of choice outweighing their r esponsibility and accountabilit y to take care for one another and to act according to all these subjects’ best interest.

Consequently, divergent discourses on the virtue of attentiveness emerged. Whereas for some, the euthanasia procedure may offer a unique opportunity for both the patient and her relatives to be better prepared for death and for the bereaved to better cope with grief, others pointed to the inner circle’s continued grappling with unresolved feelings and perceived helplessness after such a fast-track to death.

Yes, and sometimes I also see people, family members after such euthanasia, yeah, I’ve experienced it several times. They say things like, “Yes, I supported it, but I didn’t know it would affect me like this,” you know? They try to convince themselves, saying, “It was good, it was good, and I stand behind it.” Yeah, you are hardly allowed to do otherwise, but you feel that inner struggle in them, you know? Like, “Was it really okay?” But you can’t question it because you think, “Poor them,” but you still feel it, like, “How sad, how sad. (psychiatrist)

The level of medicine

The following five ethical considerations were distinguished: (1) professional duties, (2) responsibility to alleviate suffering, (3) subsidiarity, (4) professional integrity, and (5) monologic versus dialogic approaches.

First and as regards professional duties, it was (only) reported by some physicians that the physician’s duty is “ to provide good care, which includes good end-of-life care ”. Hence, physicians are the ones who should have euthanasia “as a tool in their end-of-life toolbox”. Others held a different stance and referred to Hippocrates’ Oath when stating that the physician’s duty is to save life at all costs.

Second, all the participants agreed that clinicians have the responsibility to alleviate the patient’s suffering . Whereas some welcomed the option of euthanasia due to the experienced limits of palliative care, that in some cases is deemed an insufficient response to intractable suffering, others stated that euthanasia is not needed as physicians have proper palliative care in their toolbox to alleviate all kinds and degrees of suffering.

Third and as regards the subsidiarity principle , opinions differed on the use of a palliative filter, i.e., whether a consultation with specialist palliative care units should precede euthanasia.

Fourth and as regards professional integrity , some participants relativized the physicians’ executive autonomy. As one psychiatrist stated “because in the end, we do not decide whether someone might die or not. We only decide whether we want to be of help and assist in it.” All the ones in favour of the current legal framework echoed that as physicians are the ones that have better access to the lethal drugs and the technical expertise to end the patient’s life in more efficacious ways than non-physicians, they should remain entrusted with euthanasia assessment procedures. Others (only physicians) criticized the Belgian legislator for placing too much power in the physicians’ hands so that the latter “ can play for God instead of using their pharmacological and technical know-how to save lives ”.

Fifth, and as regards the decision-making process, most participants valued the ethical principle of shared decision-making between the patient and her physicians, and some even preferred a triadic dialogue in which the patient, her relevant health carers and her social inner circle is involved in euthanasia assessment procedures. For most of them, this type of extended or relational autonomy is considered as best clinical euthanasia practice, especially when death is not foreseeable. According to some non-physicians, a strict dyadic patient-physician approach is to be preferred when death is reasonably foreseeable in a patient with sufficient mental competence. In this event, no intermediary should be tolerated as the medical secret is considered ‘sacred’. One participant elaborated further on this strict dyadic approach and said:

“ But actually, in my opinion, the request for euthanasia is something between two people. So…. Interviewer: The singular dialogue? “So, a relationship between the patient and the doctor, yes. That’s what I think. And I do understand that the legislation exists, primarily to protect the doctor against misuse or accusations, because euthanasia used to happen before too, but in secret. But for me as a doctor, it would be enough if a patient whom I’ve known for years, followed for years, maybe 20 years, 30 years, 40 years, and who is terminally ill, asks me in private, ‘I want it.’ For me, it doesn’t need to be more than that for me to say, ‘yes.’ So, there’s no need for a whole set of legislation, except of course to protect myself, maybe from the heirs who might have a different idea about it, yes, but I find it beautiful. And they say, you know, our legislation is such that you can write your euthanasia request on the back of a beer coaster and that’s enough, you know? But how it used to be, euthanasia happened just as well, that’s what I heard from my older colleagues. But it was done in private. Actually, that is the most beautiful sign of trust between a doctor and a patient. ” (Physician and consultant)

Others, all physicians without a favourable stance on euthanasia, considered medical paternalism morally justified in the end-of-life context, as (1) physicians have more intimate knowledge of the patient and are thus best placed to act in the patient’s best interests, (2) only the independent evaluation from well-trained and experienced physicians may rule out external or internalized pressure from the patient’s social inner circle, and (3) some patients may show impaired decision-making capacity when confronted with the end of life.

The level of society

As regards the origins and impact of euthanasia legislation on the level of society, the following four ethical themes emerged: (1) protection, (2) dignified dying, (3) solidarity, and (4) distributive justice.

First and as regards protection , some participants valued the existence of a legal framework for an ‘underground’ practice before 2002. According to them, this framework was highly needed to protect the patient against malicious practices and the physician against being charged for murder when ensuring herself that all the legal requirements are met.

So, I believe that it should be well-regulated in a state. In a country, it should be well-regulated. You can either be in favour of it, have reservations, or question it, but when it happens and many people want it or think it’s okay, then it should be regulated. And those, like me, who may be against it, have doubts about it, or wonder, “Is this really necessary?” I would say, or “Does it align with our purpose?” the existential comments that you can make about it, we must accept it because it would be terrible if it, well, it would be even worse if it happened in the underground, like before those laws were established, that’s, yeah. So, I think the laws should exist. Whether I would have made those laws is a different question, or whether I would vote for the parties in parliament that, you know, that support it, that’s another question, but apparently, here in North-western Europe, the need for those practices exists, and it should be regulated properly. And yes, it shouldn’t be left to amateurs or something like that, that’s not the intention. Yes, well, it serves to protect, both in terms of health and to ensure that it doesn’t become a business, of course. I’d prefer it to be integrated into the healthcare system rather than turning it into a profit-driven and exploitative affair for some others. So, that’s…. (psychiatric nurse)

Critical concerns were raised on the lack of protection of the most vulnerable people, i.e., the mentally ill and the elderly. Some of them referred to the amended Law in 2014, that also allowed minors to die by means of euthanasia – be it under more strict circumstances, inter alia, when based on unbearable physical suffering resulting from a medically terminal condition – and feared that the Law will be amended again, so it would no longer exclude the people suffering from dementia or for groups without serious incurable illness, e.g., the elderly with a perceived ‘completed life’.

Second, a major societal shift in thoughts regarding what constitutes dignified dying was reported. For some, the Law on Euthanasia reflects a nascent movement of death revivalism, in terms of people reclaiming control over their dying process. In this respect, euthanasia is deemed a counterreaction to the former dominant paternalistic attitude in Western society to systematically marginalise conversations on death and dying, e.g., due to the mechanisms of denial, avoidance, and postponement, and with the line between life and death increasingly held in physician’s hands, which has left many people ill-equipped to deal with dying and death. The current broad public support for euthanasia is seen as the individual patient taking back the decision-making process of dying and death in her own hands. They further considered euthanasia as a logical consequence of living an artificially prolonged life due to e.g., advances in medicine, that have not necessarily enhanced the quality of life.

“ One thing I also consider is that a part of our lives is artificially prolonged, you know. We don’t live longer because we are healthier, but because we have good pills or better surgical procedures, so we can afford to buy our health. So that part of life is still valuable to me, it’s not less valuable, but it’s artificially extended. So, I think we should keep that in mind, that we can prolong something artificially and maybe even go beyond a point where it no longer works. Interviewer: Beyond the expiration date? That’s what I was looking for (laughs). So, in that sense, I believe we should keep in mind that we can artificially extend something and then maybe, even if it’s just that artificial part, stop or be allowed to stop when the person no longer wants to, I think that makes perfect sense. ” (psychiatrist)

Others provided arguments against the increased death revivalism, referring to euthanasia as a ‘fast-track to death’ resulting in ‘the trivialisation of death’ in the face of formerly known and experienced Art of Dying. For instance, the current societal tendency to avoid suffering and the fear of dying may lead to patients (too quickly) resigning from a slow track to death, in which there is time to e.g., hold a wake.

But I won’t just grab a syringe, fill it up, and administer a lethal injection, you know? I follow the symptoms. And if they become uncomfortable, then I’ll increase the dosage so they can rest peacefully and not have to suffer. That’s what I call a dignified death. And if the family can be present, sometimes it takes a while for them to arrive, and they’ll say, “Come on, even a dog is not allowed to suffer that long.” Meanwhile, the person is just lying peacefully. But that too. Everything should, even that, should progress, and there isn’t much time left for vigil and, yes, I don’t want to romanticize it, but sometimes you see so much happening between families. There’re all kinds of things happening in those rooms, with the family, reconciliations being made. Memories being shared. “Oh, I didn’t know that about our father.“, an aunt walking in and telling a story. Well, so much still happens. I don’t want to romanticize it, but to say that all that time is useless, that’s not true either. And at the farewell, there’s always, the time, you think there’s time for it, but people are still taken aback when an infusion is given, that it can happen within a minute, even if they’re behind it and have been informed beforehand. Just a minute… and it’s done. The banality of death, it’s almost like that. (psychiatrist)

These and other participants also criticised ‘the romanticised image of euthanasia’, that masks the economics of the death system, taking financial advantage of ‘patients not wanting to be a burden to society’.

Third and consequently, divergent discourses on the value of solidarity emerged. For some, decades of civic engagement pointed to the need of death revivalism and patient empowerment, that resulted in the current legal framework. Others strongly criticised the lack of solidarity underpinning the legal framework on the following three counts: 1) the emphasis on patient autonomy is deemed a ’societal negligence in disguise’, as citizens are no longer urged to take care of others, 2) equating autonomy and dignity in euthanasia debates leads to the trap of viewing the ill or the elderly as having ‘undignified’ lives, and 3) wealth over health has become the credo of the current neoliberal society, as the Law on Euthanasia discourages further investments in health care but settles on the ‘commodification’ of health care.

“ I believe that we should take care of each other and especially care for the most vulnerable in our society. We shouldn’t just leave them to fend for themselves. I don’t think the motto should be all about autonomy, autonomy, and then the flip side, saying, “figure it out on your own.” That’s not acceptable. We have a responsibility to take care of each other. We are meant to care for one another. In biblical terms, we are each other’s keeper, right? “Am I my brother’s keeper?” Yes, I am my brother’s keeper. I must take care of each other, take care of others. So, I think in the long term, speaking maybe 100 years from now, people might say, “Sorry, that was a real mistake in the way they approached things.” I don’t know, but that’s looking at it from a meta-level, as historians call it, “longue durée,” and combining it with a neoliberal model, right? Neoliberalism and euthanasia thinking, it would be interesting to do a doctoral thesis on how they fit together perfectly. How they fit together perfectly… They are no longer patients, they are no longer clients, and I also don’t like the word ‘clients.’ They have become ‘users’. Sorry, but that’s our Dutch translation of the English word ‘consumers’ right? It’s like buying Dash detergent or a car; you buy care, just like the Personal Budget for people with disabilities. You buy your care, sorry, this goes against the very essence of what care fundamentally is. Care is a relationship between people; it’s not something you buy. It’s not something you say, “It’s a contract, and I want that.” It doesn’t work like that. [raising voice] The burden is on society. [end of raising voice] And when the money runs out, you have nothing left. If you can’t buy it, then it doesn’t come. “Here’s your little package,” that’s how it’s translated, and it’s always a hidden cost-cutting operation, let’s be very honest about it, a nice story, but it’s always a hidden cost-saving measure. I see right through that story, but well, big stories are always told, and they are always about saving money. [raising voice] It doesn’t bring anything, right? [end of raising voice] People’s self-reliance, they must stay at home, etc. How many people would benefit from going to a care centre, not at the end of their lives, but just because they feel totally lonely at home, but they can’t get in because nobody wants them there, as they don’t bring any profit. ” (spiritual caregiver)

Fourth, critical concerns were expressed concerning the lack of (distributive) justice due to the many existing misperceptions and misconceptions regarding medical end-of-life options that need to be uncovered. For instance, many people would be unaware of euthanasia and palliative sedation can both be dignified ways of dying, with euthanasia functioning as a fast-track and palliative sedation functioning as slow track to death. Also, the evolution of death literacy was contested: there was a sense that patients did not become more death literate, as many of them have insufficient knowledge of the content of the many end-of-life documents in circulation.

Yeah, I mean, you see, and I hear many people saying, “My papers are in order.” I won’t say every day, but I hear it almost every day, “My papers are in order.” That’s also something. It’s an illusion of control, right? Because what papers are they talking about? “My papers are in order.” When you ask them about it, they themselves don’t really know what that means, some kind of ‘living will’, ‘an advance care plan’, but yeah, with all… A living will or advance care plan is not that simple either, and then they think, “Oh, if I get dementia and I don’t recognize anyone anymore, they will give me an injection.” Ah yes, but then we are in a different domain, and that’s a whole other… But yeah, people are not well-informed, I find. They have totally wrong ideas and sometimes fear the wrong things, don’t know what is possible and what is not, and they also let themselves believe all kinds of things. Well, there are many misconceptions out there. (psychiatrist)

Participants’ ethical considerations regarding the additional procedural criteria for people with a non-terminal illness

As can be seen from the coding structure in Table 3 , participants made use of the principle justice to motivate their stance on additional (procedural) criteria that people with a non-terminal illness must meet before euthanasia can be carried out, in comparison with people with terminal illness. Those in favour of the additional procedural criteria referred to the differences between the terminally ill and the non-terminally ill regarding the aspect of content (i.e., the difference between general life expectancy and healthy life expectancy) and the aspect of time (i.e., the probability verging on certainty concerning the terminally ill versus the rough estimation concerning the non-terminally ill). Some of them also referred to the legal proceedings and stated that the Law was meant only for people with terminal illnesses to die by means of euthanasia. Others were of the opinion that it concerns only an arbitrary difference due to 1) the vagueness of the concept ‘naturally foreseeable’, i.e., suffering from a terminal illness, and the subjectivity of the calculated course and prognosis of e.g., degenerative somatic illnesses and dementia. A few participants said that this is beside the question, as one’s individual carrying capacity trumps the course and prognosis of an illness.

Participants’ ethical considerations regarding adults with psychiatric conditions

As can be seen from the coding structure in Table 4 , when asked about participants’ stances on euthanasia in the context of psychiatry, we distinguished value-based themes at the level of (1) the patient, (2) the field of psychiatry, and (3) society in general.

The level of the patient

Justice was the main value-based principle that emerged at the level of the patient. Participants in favour of not legally amending additional procedural criteria in the context of psychiatry stated that every patient with a non-terminal illness should receive equal end-of-life care options. The main counterargument given concerned the differences in patient profile, as some questioned whether the mentally ill can meet the legal criteria or stated that extreme caution is needed and thus additional criteria are in place due to the factor of e.g., ambiguity, impulsivity, and manipulation in the mentally ill.

“I find, the way the procedure is conducted for psychiatric suffering, I find it only natural that they handle it more cautiously because it’s indeed less… It’s not so easy to determine everything, is there really no other option left? And then I understand somewhere that time must be taken to investigate all of that. Because some of these people can be very impulsive, and that impulsivity needs to be addressed somewhere, of course. You also have people who can use their setbacks in the sense of, ‘I’ve been through all that, so I deserve euthanasia.’ And those are the people you need to single out because that’s just… I think those are also people who, with the necessary guidance, can still get out of it. Do you understand? It’s a form of self-pity, in a way. I think there might be resilience there, but they haven’t tapped into it themselves yet; it’s a kind of deflection or something. People with a history of, who say ‘I’ve experienced this and that, so I don’t need it anymore, just give me euthanasia, I deserve that. I’ve been through all that.’ While maybe, if they see, that’s still worth something to me, who knows, maybe that can still happen. They’re people who give up a little too quickly.” (Moral consultant)

Regarding the field of medicine, the following four value-based considerations emerged: (1) justice, (2) responsiveness to suffering, (3) protection, and (4) proportionality.

First, and as regards the principle of justice , participants in favour of equal procedural criteria for all non-terminally ill pointed to the indissociable unity of soma and psyche. A few physicians went one step further and reported that some psychiatric conditions can be considered terminal, e.g., suicidality, or predominantly of somatic nature, e.g., anorexia. The main counterarguments in this respect were (1) the firm belief in the inexistence of irremediableness in psychiatry (only mentioned by some physicians) or (2) that more caution is needed due to the higher level of subjectivity in terms of diagnostics, prognosis, and outcome.

Second, arguments against the distinction between the somatically versus the mentally ill were based on the attitude of responsiveness to the extreme extent and duration of mental suffering that can also render the mentally ill in a medically futile situation and the field of psychiatry empty-handed.

And many of the psychiatric patients I see suffer more than the average ALS patient who has to endure it for three years. In my experience, we’re less advanced in psychiatry compared to most other medical fields. You can easily say “we don’t know” in other areas of medicine and people will understand, but when it comes to psychiatric conditions, it’s different. Doctors might admit “it’s not working” or “there’s no trust,” and they might refer patients elsewhere or even refuse further appointments. I’ve even told a judge during a forced admission, “There’s simply no treatment available.” Yes, sometimes it’s just over and society must accept that there’s no solution. I’m not saying euthanasia is the solution for everyone, but I think it can be an option for some people. (Psychiatrist)

Other participants were not blind to the deep suffering, but strongly believed in the ground principle and core strength of psychiatry, namely the beneficial effect of hope. In addition, they pointed to the differences in the nature and course of somatic versus psychiatric illnesses when stating that considerably more time is needed in psychiatry, with inclusion of the therapeutic effect of hope to become effective.

“And I also believe that collectively, within psychiatry, we can and must provide additional support to endure profound despair. So, even in the face of seemingly endless hopelessness, we must maintain hope, look towards the future with trust, and continuously offer encouragement to those who feel hopeless. Our unwavering optimism and support convey the message that together, we can overcome. Because individuals who suffer from severe mental illness are treatable, I consider myself to be a genuinely optimistic psychiatrist. I have witnessed individuals who have harbored feelings of hopelessness and despair for extended periods, sometimes even decades, undergo profound transformations and experience significant improvement, and in some cases, complete recovery.” (Psychiatrist)

Third, participants in favour of the current legal framework reported that allowing euthanasia for the mentally ill was needed in the light of protection , as it might protect the patient against brutal suicides and also against therapeutic tenacity that more often occurs in psychiatry. Other participants in favour of, as well as participants against the current framework held a different stance on the following two counts: (1) allowing euthanasia conflicts with the aim of psychiatry to prevent suicide at all costs, and (2) the mentally ill are insufficiently protected by the Law as there are insufficient built-in safeguards against therapeutic negligence.

But usually with a psychiatric condition, death isn’t imminent. That’s the tricky part, you know? How many suicides do we have here? But anyway, I have an issue with that, using euthanasia as a kind of antidote against, well, against suicide, that’s a completely different matter. But death and psychiatry, why do we have all those government programs against suicide then? Isn’t that dying as a result of a psychiatric condition? (Psychiatrist, supportive of maintaining euthanasia option in psychiatric settings)

Fourth and as regards proportionality , a few participants with a normative stance against euthanasia in the context of psychiatry argued that psychiatric patients may not be allowed to die by means of euthanasia for as long as the field of psychiatry is under-resourced. They pointed to e.g., the lack of sufficient crisis shelters with a 24/7 availability and the lack of palliative approaches in the field of psychiatry. Instead of allowing euthanasia, they argue ‘to jolt the Belgian government’s conscience on mental health policies’. As a revolution to defeat the built-up inequalities in the field of medicine and knowing that palliative and rehabilitation initiatives in psychiatry require time.

“I oppose euthanasia in psychiatry. Compared to somatic medicine, psychiatry lags behind by 50 years. While physical pain can be managed with medication, there’s insufficient research on treatments for psychological suffering. Promising options like psilocybin and ketamine show potential in easing existential mental struggles. Magnetic stimulation can also alleviate depression, yet access remains limited. Unfortunately, these treatments are underused and under-researched. Many patients aren’t informed about these alternatives to euthanasia. It’s frustrating to see reluctance in exploring these options, especially when they offer hope to long-suffering patients. Utilizing these methods in psychiatric settings carries no risk of addiction. However, current restrictions impede access to these treatments, depriving patients of viable alternatives.” (Shortened excerpt from an interview with a psychiatrist)

When taking a societal perspective, no new arguments emerged from the respondents strongly in favour of the current euthanasia legislation, other than the main value of justice described in the subsection above. According to some, the current Law on Euthanasia busts some myths on the malleability of life and medical omnipotence, and even on psychiatric illnesses as a ‘Western phenomenon’, with e.g., depression and suicidality as a consequence of material wealth instead of a neurologic issue in the brain (only reported by some non-physicians).

There are quite a few people who consider the whole issue of the unbearable nature of psychological suffering a luxury problem, you know? They say something like, “Yeah, where are the suicide rates, to put it in equivalent terms, the lowest in the world? In Africa, because they obviously don’t have the luxury to concern themselves with that. They are already happy if they have a potato on their plate every day.” This is a viewpoint held by many, right? They call it a luxury problem, a modern, typical Western luxury problem. And perhaps there is some truth to it, right? But there are other causes of mortality there, which are much higher, such as child mortality, for example. (non-physician)

Counterarguments were also given and pointed to the value of (distributive) Justice. First, euthanasia was considered as ‘a logical but perverse consequence of systemic societal inequities’ on the one hand and the ‘further evolution towards the commodification or commercialisation of health care in individualised Western societies’ on the other. This would then lead to another vicious circle, with a rapidly growing ‘perception of vulnerable patient groups as irremediable’ and hence less likely to receive potentially beneficial treatment or other interventions. Some took a more radical stance against euthanasia in psychiatry, as they were convinced that euthanasia is nothing but ‘a perverse means to cover societal failures’. In addition, some participants with permissive stances on euthanasia in the context of psychiatry pointed to gender disparities in euthanasia requestors. This was based on the evidence that in the context of psychiatry, many more females request and die by means of euthanasia than males, and proportionally more female patient suffering from psychiatric disorders request and die by means of euthanasia compared to their fellow peers suffering from life-limiting or predominantly somatic conditions.

Finally, some respondents said that they could understand and, in some cases, even support euthanasia in some individual cases, but felt uncomfortable with its impact on the societal level. They pointed to the vicious circle of stigma and self-stigma that may impede the mentally ill to fully participate in societal encounters. In the long run, this type of societal disability may lead to vulnerable patients no longer wanting to perceive themselves a burden to society or to remain ‘socially dead’.

While considering their ethical perspectives towards euthanasia, participants weigh up various values related to and intertwining with the following levels: (1) the patient, (2) the patient’s inner circle, (3) the field of medicine, and (4) society in general. Overall, the participants shared an amalgam of ethical values on each of these four levels, regardless of their stance on euthanasia. It was mainly the interpretation of some values, the emphasis they placed on the key components underpinning each value and the importance they attach to each of the four levels, that determined their stance towards euthanasia. It was uncommon for different ethical values to be explicitly mentioned, which could distinguish distinct stances for or against euthanasia.

As regards euthanasia in the context of psychiatry, the focus has primarily been on arguments for and against euthanasia [ 23 ]. However, our study takes a more comprehensive approach, exploring the issue from a wider range of perspectives. This approach allowed us to uncover more complex insights that may have been overlooked if we had only considered it as a black-and-white issue.

Both the systematic review of Nicolini et al. [ 23 ] and our study emphasized fundamental ethical domains such as autonomy, professional duties, and the broader implications of euthanasia on mental healthcare. While our findings aligned with those of the systematic review, our inquiry delved deeper into psychiatry-specific considerations, including the influence of sudden impulses and feelings of hopelessness. This underscores the importance of healthcare professionals carefully assessing the timing and contextual aspects of such decisions within psychiatric contexts, ensuring individuals receive timely and tailored support and interventions.

Furthermore, our study extended beyond the boundaries of medical discourse, addressing broader societal ramifications. Participants engaged in discussions about ‘social death,’ a phenomenon that describes the marginalization of individuals despite their physical existence. This discussion highlighted entrenched structural inequities and societal attitudes perpetuating social alienation, particularly affecting marginalized demographics, including individuals grappling with mental health issues. Advocating for societal inclusivity and supportive measures, our study strongly emphasized the need to foster a sense of unity and respect for everyone’s worth, regardless of their circumstances.

Interpretation of the main findings

We make explicit and discuss the values corresponding to the four classical principles of biomedical ethics, in particular beneficence, non-maleficence, respect for autonomy and justice [ 31 ]. We place these values in the context of different ethical approaches, such as religious, professional, emancipatory, social, societal, and virtue-oriented approaches (see the ethical interpretation framework in OSF).

In the discussion section, therefore, the following main values and virtues are addressed: (1) the values of beneficence and non-maleficence in a religious perspective, (2) those same values in the professional context, (3) the value of autonomy in the contemporary emancipation paradigm, (4) the virtue of compassion stemming from virtue ethics theory, (5) the value of quality care in a social approach, and (6) the value of justice in societal policy contexts.

Beneficence and non-maleficence: religious perspective

In the realm of euthanasia debates, the interplay of religious beliefs and the values of ‘beneficence’ (the act of doing good) and ‘non-maleficence’ (do no harm) has emerged as a pivotal point of contention, often giving rise to divergent perspectives on this complex ethical issue [ 32 , 33 ]. Some religious traditions staunchly oppose medical end-of-life decisions, including euthanasia and abortion, viewing them as morally wrong and as disruptive to the natural order of life and death. The principle of ‘sanctity of life’ forms the bedrock of their belief system, underscoring the significance they attach to preserving life at all costs, as an embodiment of beneficence [ 34 , 35 ]. Conversely, those who argue for the ethical consideration of euthanasia emphasize the concept of beneficence in alleviating suffering and granting autonomy to individuals in their final moments. However, intriguingly, our examination of the topic has revealed a nuanced relationship between religious beliefs and attitudes toward euthanasia. While some individuals in our sample expressed strong religious convictions ( n = 5) and even considered themselves as practicing Catholics, they did not necessarily adopt a firm normative stance against euthanasia, signifying a complex balancing of beneficence and possible maleficence within their belief system. Conversely, certain participants who held steadfastly against euthanasia ( n = 3) did not identify with any religious belief system, yet their position was firmly grounded in their perception of potential maleficence associated with medical intervention in life and death decisions. This observation aligns with recent studies highlighting the intricate and multifaceted nature of religiosity, where individuals within various religious frameworks may hold diverse beliefs and values surrounding beneficence and non-maleficence [ 36 , 37 ]. Moreover, it underscores the powerful influence of societal culture on shaping personal perspectives on euthanasia, and how these views are entwined with the values of beneficence and non-maleficence [ 36 , 37 ].

Beneficence and non-maleficence: professional values

Second, a profound division arises between proponents and opponents, particularly in the field of medicine, where interpretations of the Oath of Hippocrates play a central role. At its core, the Oath emphasizes the deontological values of beneficence and non-maleficence, as physicians are bound by a prohibition against administering a deadly drug to ‘anyone,’ even at their explicit request, highlighting the reverence for the sanctity of life inherent in medical practice. This interpretation has led some to perceive active euthanasia as contrary to these sacred principles of preserving life. The notion of beneficence, understood as promoting the well-being of patients, appears to be in tension with the act of intentionally ending a life. Critics argue that euthanasia undermines the fundamental duty of physicians to protect and preserve life. Additionally, the principle of ‘non-maleficence,’ which entails not harming the patient or their life, is seen by some as being in accordance with the ‘sanctity of life’. However, the Oath also recognizes the significance of alleviating relentless suffering, opening the door to a nuanced debate on how these timeless principles align with the modern concept of euthanasia. As the discourse unfolds, perspectives emerge, with some viewing euthanasia as a compassionate form of care, that respects the autonomy and dignity of patients facing terminal illness or unbearable suffering. Advocates argue that euthanasia can be an act of beneficence, providing relief from pain and allowing individuals to die with dignity and control over their own fate. On the other hand, opponents of euthanasia steadfastly uphold the sanctity of life principle, viewing it as an ethical imperative that must not be compromised. They argue that intentionally ending a life, even in the context of relieving suffering, undermines the fundamental values of medical ethics and the intrinsic worth of every human life. For these individuals, euthanasia represents a profound ethical dilemma that conflicts with the near sanctity of medical ethics and the value of preserving life [ 38 , 39 , 40 ].

Autonomy: contemporary emancipation paradigm

The principle of autonomy emerges as one of the most prominent and contentious values in our contemporary emancipation paradigm. Autonomy, grounded in the belief in individual self-governance, is often cited as a foundational ethical principle in euthanasia legislation, emphasizing the significance of an individual’s capacity to make choices aligned with their own personal values and desires [ 31 ]. However, the discussion on autonomy extends beyond pure individualism, with considerations for relational autonomy, recognizing that individuals are not isolated entities but are shaped by their relationships, communities, and broader societal structures [ 41 ]. Within the context of euthanasia, the complexities of autonomy become evident as participants in the debate strived to find a delicate balance. On one hand, they stress the importance of respecting a patient’s individual autonomy in end-of-life decisions, ensuring that their choices are honoured and upheld. Simultaneously, they acknowledge the necessity of accounting for the patient’s social context and broader community when considering euthanasia as a compassionate option. Nevertheless, concerns are raised by some about the potential risks posed by euthanasia legislation, particularly for the most vulnerable individuals, such as the elderly and the mentally ill. These concerns centre on the negative consequences that may arise when individual autonomy is exercised without consideration for others or for societal well-being, and the concept of “social death,” which refers to the marginalization and exclusion of individuals from social relationships and networks due to illness or disability [ 42 , 43 ].

Amidst these complexities, the ethical value of autonomy stands as a paramount consideration. However, its application necessitates thoughtful consideration and balance with other values, including justice, equality, and societal responsibility. Recent reflections on “relational autonomy” have prompted critical evaluations of the idea of pure autonomy, emphasizing the need to delve deeper into the micro, meso, and macro levels that underpin autonomy and address potential conflicts between individual and relational autonomy [ 44 ]. Further, it highlights the imperative to take the broader societal context into account when grappling with the ethical challenges associated with euthanasia [ 45 ].

Compassion: virtue ethics

Our study confirms that while the value of autonomy holds importance, it is not the sole determinant in the ethical considerations surrounding euthanasia [ 46 ]. In this complex discourse, numerous other ethical values and virtues come to the fore, including the significance of compassion towards suffering individuals and the imperative of alleviating their distress. Notably, compassion is not merely a singular principle, but rather a profound ground attitude or virtue that motivates individuals to empathize with the pain of others and take actions to provide relief.

As revealed in our research, participants who opposed euthanasia did not invoke religious frameworks; instead, they explored diverse philosophical approaches to comprehend suffering and compassion. Among these, non-Western philosophies emphasized embracing suffering as an intrinsic aspect of life, acknowledging the impermanence of all things, including suffering. Additionally, the existentialist perspective of Albert Camus underscored suffering’s innate connection to human existence, leading to deeper self-understanding and comprehension of the world.

These philosophical viewpoints find relevance in the realm of ethics as well. Virtue ethics, in particular, highlights the significance of cultivating virtues such as courage and resilience, while narrative ethics emphasizes storytelling as a means to gain profound insight and reflection on experiences of suffering [ 47 , 48 ]. Such narratives foster empathy and create a shared sense of experience and community.

Our results show that, for some, suffering may hold positive value in various ways. The nature and intensity of suffering, alongside an individual’s values and virtues, beliefs, and coping capacity, significantly influence the ethics of euthanasia decision-making. An intricate approach that recognizes the multifaceted impacts of suffering becomes essential, acknowledging that various factors could potentially influence the experience of suffering as well as the interpretation of the consequences of the suffering experience. It’s possible that this approach doesn’t solely depend on the quantity of suffering or even its nature. Instead, it could be related to the delicate balance between one’s ability to endure suffering, the burden it places on them, and the (ir)remediableness of this burden, which can vary greatly among individuals as well as it might change over time. Such an approach aims to alleviate relentless suffering and, in certain cases, relieve unnecessary and enduring distress without consistently imposing interpretations upon it. Thus, acknowledging that, experiences of suffering are inherent to life and might act as drivers for personal development, fostering resilience, empathy, and a deeper apprehension of life’s essence, while it also might represent something irremediable, underscores the significance of a broader meaning of the concept of compassion as guiding principle in euthanasia discussions. These discussions further extend to the recognition of the dynamic trajectory inherent to the burden of suffering, as well as its potential for temporal evolution within the individual experiences of the afflicted. Such recognition not only fosters a more intricate understanding of the complex interplay between suffering and resilience but also highlights the acknowledgment that there may be moments when suffering becomes unendurable, surpassing the individual’s capacity to cope. This dimension introduces a layer of intricacy to the ethical considerations inherent in these discussions, thus necessitating a nuanced approach that contemplates the potentialities as well as the constraints of human endurance and the associated ethical ramifications.

Quality care: social approach

Examining euthanasia debates from a sociological perspective sheds light on the influence of societal inequalities in healthcare access and quality on the practice of euthanasia, and how it can shape personal, relational, and societal values, leading to the normalization or culturalization of euthanasia [ 49 ]. A noteworthy finding in this context is the contrasting perspectives on the evolving process of dying, transitioning from being perceived as in God’s hands to a more medical realm, where proponents of euthanasia view medicine as a catalyst for granting individuals greater control over the timing, manner, and circumstances of their own deaths. They envision the opportunity to be surrounded by loved ones and maintain consciousness while embracing the option of euthanasia, which they believe improves the quality of life at the end.

Proponents also emphasize additional benefits, such as enhanced transparency and regulation, ensuring ethical conduct through regulatory measures. They express concerns about a cultural environment where certain physicians adopt paternalistic attitudes and resist accepting death, prioritizing the extension of life as a moral imperative. In contrast, critical voices argue that death and dying have become increasingly medicalized, leading to their institutionalization. Some critics further contend that this medicalization has devalued the dying process and commodified life itself, leading patients, and families to increasingly rely on medical interventions at life’s end.

Moreover, as shared by some of the interviewees, the growing acceptance of medical assistance in dying may raise concerns. It’s conceivable that this evolving attitude could contribute to a perception of death undergoing a shift in seriousness, resulting in decisions about one’s life conclusion being made with less comprehensive thought and insufficient reflection. Consequently, this scenario could potentially lead individuals who are more susceptible to experiencing feelings of life’s insignificance, weariness, or sense of being ‘through with life’, to lean towards considering euthanasia. However, this inclination might also be driven by a lack of sufficient access to the necessary, long-term quality mental health care that would otherwise facilitate the pursuit of a life imbued with adequate significance, comfort, and dignity, achievable through appropriate (mental) healthcare.

Earlier research indicates that Belgium’s psychiatric care system has been grappling with underfunding and fragmentation, leading to individuals falling through the gaps in the mental health safety net [ 50 ]. One critical aspect is, e.g., the inadequate investment in long-term, intensive care, which is precisely the kind of support that individuals grappling with such existential questions may require.

Hence, in the context of euthanasia debates, the value of quality care emerges, encompassing the principle of beneficence, which emphasizes the obligation to provide good care and enhance the overall well-being of individuals. Ethical considerations go beyond the individual’s right to autonomy, extending to societal factors that influence healthcare practices and attitudes towards euthanasia. Addressing the impact of healthcare disparities and the medicalization of dying becomes imperative to ensure ethical and compassionate decision-making that upholds the true value of quality care and respect for human dignity.

Justice: societal policy contexts

In the context of euthanasia in somatic versus psychiatric medicine, ethical considerations regarding euthanasia often revolve around the fundamental value of justice [ 23 , 51 , 52 ]. Some respondents in our study emphasized the need for parity between somatic and psychiatric illnesses, recognizing that there should be no distinction between patients suffering from either. They argued that upholding the principle of justice demands equal treatment and recognition of the suffering experienced by individuals with psychiatric illnesses.

However, for others, achieving justice requires acknowledging and addressing the unique challenges faced by patients predominantly suffering from psychiatric illnesses. A comprehensive and integrated healthcare approach is proposed, where mental health is regarded as an integral part of overall health. This approach involves allocating the same level of attention and resources to psychiatric medicine as given to somatic illnesses, aiming to combat stigma and discrimination towards individuals with psychiatric conditions. Equitable treatment during life and at the end of life becomes the focus.

Yet, the Belgian context of psychiatry presents significant challenges. The field is characterized by underfunding and fragmented care, particularly for individuals with longstanding and complex psychiatric problems [ 53 ]. Additionally, the end-of-life care for psychiatric patients is still underdeveloped, and palliative psychiatry is in its early stages, lacking a uniformly agreed-upon definition or clear implementation guidelines [ 54 ]. In response, Belgium is exploring the “Oyster Care” model, designed to provide flexible, personalized care for individuals with severe and persistent mental illness who may be at risk of neglect or overburdened by psychiatric services [ 55 ]. This model aims to create a safe “exoskeleton” or supportive environment for patients, recognizing that recovery, reintegration, and resocialization might not be attainable for everyone with certain psychiatric conditions [ 55 ].

However, the integration of Oyster Care in today’s psychiatric practice is still limited and requires further development. Emphasizing the value of justice calls for continued efforts to enhance and refine psychiatric care, ensuring that individuals with psychiatric illnesses receive equitable treatment throughout their lives, including end-of-life care decisions [ 55 , 56 ].

Implications for future research, policy, and practice

In terms of policy and practice, our findings indicate that the discourse surrounding euthanasia extends beyond legal or medical considerations and encompasses fundamental ethical values that underpin our society. These values may not always be aligned and can create ethical dilemmas that are challenging to address. A value-centred approach to the euthanasia debate necessitates a constructive ethical dialogue among various actors involved, including patients, healthcare practitioners, and the wider community. This conversation should strive to comprehend the diverse values involved and endeavour to achieve a balance between these values. Additionally, ethical dialogue might encourage individuals to reflect on their own assumptions and beliefs, leading to more informed and thoughtful decision-making on ethical and moral issues. Ultimately, ethical dialogue can promote a more just and equitable society that prioritizes empathy, understanding, and mutual respect.

It is also crucial to acknowledge that patients with somatic illnesses and those with psychiatric illnesses may have different needs and expectations regarding the end of life. Hence, end-of life healthcare must be sensitive to the unique needs of each group. This recognition of differences does not justify unequal treatment or discrimination based on the type of illness. Instead, it involves addressing the different needs and expectations of each patient group while ensuring equitable and high-quality care for all.

As regards research, most articles on euthanasia legislation to date placed the emphasis on what other countries and states can learn from the Belgian and Dutch euthanasia practice. In addition, what can be learned is mainly restricted to the evidence and reflections on factual issues from a global practical-clinical perspective. Consequently, one of the main ethical, clinical, and societal issues remains unrequited, namely the impact of legislation and its consequences on an intrapersonal, interpersonal, medical, social, and societal level. Although cultural diversity is recently put high on the research agenda concerning general health care and mental health care, it is largely understudied in the context of end-of-life decisions and largely ignored in the context of psychiatry. Fewer articles have focused on what the latter countries may learn from those not implementing or not considering euthanasia legislation. In an increasingly diverse society, rapidly evolving in terms of fluidity and multi-ethnicity, cross-cultural research can help us learn from one another. To address the many dimensions of euthanasia, there is a need for input from a variety of academic fields, including sociology, anthropology, communication studies, and history. Further interdisciplinary research in all these areas could help inform policy and practice related to euthanasia.

Strengths and limitations

This is the first empirical in-depth interview study that uncovered the underlying ethical considerations of a variety and relatively large sample of health care professionals and volunteers in Belgium, a country with one of the most permissive legislative frameworks regarding euthanasia, as – unlike in some other countries – it does not exclude adults with psychiatric conditions per definition. Belgium is also one of the pioneering countries with such a legislative framework and can boast on two decades of euthanasia legislation and implementation.

We succeeded in providing a unique and representative sample of participants, varying in gender, work setting and expertise, and stances regarding euthanasia. Finally, and unlike former scientific studies that focused on either the somatic or psychiatric context, we now gauged for participants’ ethical perspectives on euthanasia in both fields of medicine.

There are also several limitations to our study. We may have experienced selection bias, as our sample of non-physicians had varying ages, but the sample of physicians was mostly older than 60. In addition, some interviews had to be postponed or cancelled due to COVID-19 restrictions and, potentially, due to legal and emotional concerns surrounding a high-profile euthanasia case being brought to court. Additionally, our sample exhibited heterogeneity regarding worldview (religious or non-religious), but possibly not regarding other culture-sensitive aspects, like migration background. As our qualitative research focused on exploring themes, narratives, and shared experiences rather than on ensuring high participation rates for statistical generalizability, drawing definitive conclusions regarding the prevalence of each opinion (pro/ambivalent/critical/against), the level of experience, or perspective across the entire spectrum of euthanasia practice is beyond the scope of our study.

Finally, although there is a growing number of countries and states around the globe with a legislative framework on euthanasia, all the legal frameworks differ from one another, so the results of our study cannot be generalized to the specific euthanasia context in e.g., Switzerland or Canada.

Our study illuminates the foundational values guiding perceptions of euthanasia, including autonomy, compassion, quality care, and justice, which permeate through four interconnected tiers: the patient, their inner circle, the medical community, and society at large. Despite varied stances on euthanasia, participants demonstrated a convergence of ethical principles across these tiers, shaped by nuanced interpretations and considerations. While explicit discussions of distinct ethical values were infrequent, their profound impact on euthanasia perspectives underscores the importance of ethical discourse in navigating this complex issue. By fostering inclusive dialogue and reconciling diverse values, we can promote informed decision-making, justice, and empathy in end-of-life care, particularly in psychiatric settings. Interdisciplinary research is essential for a comprehensive understanding of euthanasia’s dimensions and to inform policy development. While our study is rooted in Belgium, its implications extend to the broader euthanasia discourse, suggesting avenues for further exploration and cross-cultural understanding.

Data availability

The datasets generated and/or analysed during the current study are not publicly available due reasons of privacy and anonymity, but are available from the corresponding author on reasonable request, following procedures from all 3 Medical Ethics Committees involved. To access the supplementary materials, see the Open Science Framework repository at https://osf.io/26gez/?view_only=af42caddb2554acfb7d1d5aabd4dec7a . Upon publication of this paper, the repository will be made public, and a shorter link will be provided.

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Acknowledgements

The authors wish to thank prof. dr. Kenneth Chambaere and prof. dr. Kurt Audenaert for their preliminary advice regarding the ethics of the research methodology, dr. Steven Vanderstichelen for his help with the interviews (i.e., conducting and transcribing) and all the participants for sharing their professional and in some cases also personal experiences during the interview. We’d also like to thank prof. dr. Kenneth Chambaere for the supervision during the conducting of the interviews and his feedback on the ‘near to final’ draft.

MV is funded by the Research Foundation Flanders via research project (G017818N) and PhD fellowship (1162618 N).

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The article has been developed with the following authors’ contributions: MV was responsible for the study methodology and managed ethical approval; MV conducted most of the interviews and wrote the main manuscript texts. AL drafted the ethical interpretation framework. MV, LM, KP and AL were responsible for the coding structure and data interpretation and performed a critical review and revision of the final manuscript.

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This research project was performed in accordance with the Declaration of Helsinki and the European rules of the General Data Protection Regulation. It received ethical approval from the Medical Ethics Committee of the Brussels University Hospital with reference BUN 143201939499, from the Medical Ethics Committee of Ghent University Hospital with reference 2019/0456, and from the Medical Ethics Committee of the Brothers of Charity with reference OG054-2019-20. The interviews were held after obtaining informed consent from all the participants.

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Verhofstadt, M., Moureau, L., Pardon, K. et al. Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium. BMC Med Ethics 25 , 60 (2024). https://doi.org/10.1186/s12910-024-01063-7

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Healthcare personnel’s perspectives on health technology in home-based pediatric palliative care: a qualitative study

Judith Schröder ORCID: orcid.org/0000-0001-5397-0260 1 ,
Kirsti Riiser 2 &
Heidi Holmen 1 , 3

BMC Palliative Care volume 23 , Article number: 137 ( 2024 ) Cite this article

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In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has highlighted the role of healthcare personnel when utilizing health technology in home-based pediatric palliative care, but specific knowledge of healthcare personnel’s views on the technological relevance remains limited. Therefore, our study has explored potentials and limitations of health technology in home-based pediatric palliative care from the perspectives of healthcare personnel.

Our study utilized a qualitative, descriptive, and exploratory design, including five focus groups with a total of 22 healthcare personnel. The participants were selected from various health regions in Norway and were experienced in providing home-based pediatric palliative care. Using reflexive thematic analysis, we interpreted data obtained from focus groups, identified patterns, and developed themes.

The analysis resulted in the development of three intersecting themes: balancing in-person interaction and time in home-based pediatric palliative care; exchange of information can improve timely and appropriate care; and the power of visual documentation in pediatric palliative care. The healthcare personnel acknowledged difficulties in fully replacing in-person interaction with health technology. However, they also emphasized potentials of health technology to facilitate information sharing and the ability to access a child’s health record within interdisciplinary teams.

The results underscored that technology can support pediatric palliative care but must be thoughtfully integrated to ensure an individualized patient-centered approach. To maximize the benefits of health technology in enhancing home-based pediatric palliative care, future research should address the limitations of current health technology and consider the opinions for information sharing between relevant healthcare team members, the child, and their family.

Peer Review reports

Pediatric palliative care focuses on maximizing the quality of life for children with life-limiting or life-threatening conditions and their families [ 1 ], with home-based care aiming to provide a sense of normalcy based on their preferences [ 1 , 2 , 3 , 4 , 5 ]. One way of supporting home-based care is using health technology, which has been suggested to reduce traveling, enhance communication between families and healthcare personnel, and enable peer-to-peer support from pediatric specialists in hospitals for home-care teams [ 3 , 4 , 5 , 6 , 7 ]. However, there are various understandings and definitions of what health technology entails [ 3 , 4 , 5 , 6 , 7 ]. In our study, health technology encompasses the broad utilization of information and communication technologies to enhance patient-centered care, including eHealth [ 4 ], telehealth [ 5 ], telemedicine [ 3 ], or digital health [ 6 ], hence adopting a comprehensive approach.

One important aim of health technology in home-based pediatric palliative care is to enhance the accessibility of specialized pediatric palliative care [ 3 , 4 , 5 , 6 , 7 ]. Previous research on health technology in palliative care comprises videoconferencing, remote patient monitoring for assessment, mobile applications for information sharing, and electronic health records accessible in different healthcare settings [ 8 , 9 ]. However, research has predominantly focused on using these tools in palliative care for adults, with limited exploration in pediatric palliative care [ 3 , 4 , 5 , 6 , 7 ]. In pediatric palliative care, videoconferencing has gained the most attention because it is suggested to facilitate consultations, allow for valuable face-to-face interactions, and promote individualized patient-centered care [ 3 , 4 , 5 , 6 , 7 , 10 , 11 ]. Furthermore, videoconferencing can be useful for healthcare personnel for effective care team meetings, peer-to-peer support, and education [ 4 , 6 ]. However, videoconferencing is often used as a supplementary tool rather than a complete substitute for in-person meetings [ 3 , 4 , 5 , 6 , 10 , 11 ]. Various factors have been reported to hinder the widespread adoption of videoconferencing among healthcare personnel. These include hesitations towards engaging in sensitive conversations over video and concerns about privacy [ 3 , 4 , 5 , 6 ]. Moreover, when multiple members of the care team participate in the same videoconference it can create an overload of excessive healthcare-related information for families, which could potentially lead to over-servicing and risk overwhelming families [ 10 , 11 ]. Furthermore, research suggests that healthcare personnel might require time to acclimate to using video technology in clinical practice and may experience a lack of control when working with unfamiliar and uncomfortable technological interfaces [ 11 ]. Finally, healthcare personnel expressed concerns about potential impacts on the relationship they build with children and their families, and they worried that videoconferences might impede, disrupt, or alter this crucial relationship [ 4 , 5 , 10 , 11 ]. These hesitations compromise the potential efficiency and cost-saving benefits of videoconferencing [ 3 , 4 , 5 , 6 ].

Research emphasizes that healthcare personnel play a crucial role in implementing health technologies in home-based pediatric palliative care [ 3 , 4 , 5 , 6 ]. If healthcare personnel encounter challenges or hold negative attitudes toward health technology, it may lead to reduced acceptance and less utilization in clinical practice [ 10 , 11 ]. However, there is limited research available addressing the use of health technology by healthcare personnel in home-based pediatric palliative care [ 3 , 4 , 5 , 6 ]. Our study examined healthcare personnel’s perspectives on using health technology in this context in Norway, aiming to explore its potentials and limitations.

Our study employed a qualitative descriptive and exploratory approach, giving comprehensive insights into healthcare personnel’s perspectives through focus groups.

Setting, recruitment, participants

The publicly funded Norwegian healthcare system offers comprehensive and free coverage to all residents, with primary healthcare services being organized and managed by municipalities [ 12 ]. Efforts have been made to establish a comprehensive children’s palliative care service, supported by national guidelines published by the Norwegian Directorate of Health in 2016 [ 13 ]. The commitment to delivering healthcare services for seriously ill children also finds prominence in the government’s digitalization strategy for the 2019–2025 period [ 14 ], emphasizing the importance of providing citizens with a user-friendly and seamless experience through utilization and exchange of data within a collaborative digital ecosystem. The use of health technology in Norway, as in many other countries, is implemented to help enhance and streamline home-based healthcare services [ 14 ]. The use of health technology can address important aspects, including the efficient utilization of resources, financial sustainability, and the environmental impact of healthcare services [ 12 ]. Additionally, health technology can enable timely care delivery to rural and remote populations [ 15 ].

We applied purposive sampling, targeting healthcare personnel involved in primary healthcare services in Norway with valuable expertise in home-based pediatric palliative care [ 16 ]. The first author JS obtained contact information of healthcare personnel through three sources: the advisory group of the research project “Children in Palliative Care - health technology in home-based pediatric palliative care” (CHIP homeTec) [ 17 ], and pediatric palliative care teams at two university hospitals. Eight municipal healthcare services were contacted and invited to receive information about the study design by phone and email. Of these, five municipal services accepted their participation in the study, while three declined due to heavy workloads.

The participants were healthcare personnel employed in primary healthcare services that were located across different regions in Norway. These primary healthcare services served populations ranging from 3,750 to 77,550 inhabitants and encompassed areas from 70 to 2,500 square kilometers. The jurisdictions of these primary healthcare services included both urban and rural areas. Five focus groups were created with 22 participants. One group included three participants, another had four participants, and the remaining three groups had five participants each. One participant was male. Table 1 presents the self-reported professions of study participants and their respective years of experience in pediatric palliative care. The participants included physiotherapists ( n = 8), occupational therapists ( n = 6), public health nurses ( n = 2), child and youth workers ( n = 2), assistant nurses ( n = 2), one palliative care nurse, and one social worker. All participants were providing primary healthcare services to children in general and specifically to children with palliative care needs. The participants’ work experience in pediatric palliative care ranged from 6 months to 30 years, with an overall median duration of 11 years.

Data collection

Before participating in the focus groups, all participants completed a web-based questionnaire regarding their profession, workplace, and years of experience in pediatric palliative care. The Service for Sensitive Data (TSD) provided by the University of Oslo was utilized to collect and store all data from the questionnaires. The TSD server is specifically designed to ensure data security [ 18 ].

We conducted focus groups by following established guidelines [ 19 ]. A pilot focus group was conducted to test the brief and flexible semistructured interview guide and the audio recording tool. The interview guide was designed to be broad and flexible, stimulating wide-ranging discussions on the use of health technology by healthcare personnel with minimal steering from the moderator [ 20 ]. Starting with open-ended questions about general experiences in pediatric palliative care often led participants to relate to positive experiences and what was working well for them. To facilitate a balanced conversation, we incorporated specific prompts addressing barriers and limitations. Additionally, conversations around desired innovations for streamlining home-based pediatric palliative care naturally highlighted the potential benefits of health technology. The complete interview guide in English language is available as supplementary material 1 .

JS (moderator) and KR or HH (secretary) met the respondents for the first time at the designated focus group. At the fourth focus group, another Ph.D. candidate filled in as the secretary. The focus groups were conducted during working hours between March and April 2023 at the participants’ workplaces. The purpose of the research project, the background and research interests of the researchers, and the roles of the moderator and secretary were presented to the participants before the interviews started. A brief introduction to health technology as communication and information technology used in remote care was given. The interviews were recorded digitally, and the recordings were stored and transcribed onto the TSD server [ 18 ]. Three of the focus groups were transcribed by JS, and two were transcribed using Whisper, a speech recognition model that transcribes audio files [ 21 ]. JS ensured the accuracy of the transcriptions produced by Whisper by thoroughly reviewing and editing them multiple times. All transcriptions were edited and adapted to written language norms. The focus groups lasted between 63 and 87 min.

We employed reflexive thematic analysis, which offers theoretical flexibility and systematic guidelines for a comprehensive exploration of the dataset [ 22 ]. The analysis followed a constructivist paradigm, aiming to understand the meaning that the participants attributed to their perspectives on health technology in home-based pediatric palliative care.

JS analyzed the data by repeatedly listening to the recorded discussions and reviewing the transcripts to become familiar with the data. KR and HH were given access to the transcripts, and we met to exchange our initial thoughts and reflections on the dataset.

Progressing to the second phase of generating the initial codes [ 22 ], we conducted an inductive approach to best represent meaning as communicated by the participants and identify relevant sections of data within the dataset; we then subsequently categorized similar codes and their associated meanings (Table 2 ). In phase three, we developed provisional candidate themes on shared meaning by grouping codes [ 22 ]. This process was not strictly linear because we switched between phases three and four, where themes were continuously re-evaluated to uncover underlying contradictions and deeper insights into the participants’ perspectives. We were cognizant of our role as cocreators of themes and approached the interpretation of data through the lens of our perceptions and understanding of previous research [ 22 ]. JS prepared a summary for each theme during phase five and shared these summaries with KR and HH. Together, we worked collaboratively to enhance, clarify, and label the identified themes. In our analysis, we concentrated on identifying the main themes that provided a detailed, interpretive, and contextualized narrative of our dataset [ 22 ]. As a result, we did not establish any subthemes. Finally, JS created an analytical narrative that addressed the research question, which was reviewed and edited by KR and HH for accuracy and clarity.

Preunderstanding

All authors (JS, KR, HH) are actively engage in the CHIP homeTec research project, which investigates the utilization of health technology in home-based pediatric palliative care [ 17 ]. Our preunderstanding has been influenced by our previous systematic review. The results from this review highlighted the needs of healthcare personnel when delivering home-based pediatric palliative care. These needs encompass the establishment of relationships with both the child and their family, effective collaboration within the healthcare team, and the provision of services in an environment that guarantees fairness and long-term sustainability [ 23 ].

Ethical considerations

Our study was approved by the Norwegian Agency for Shared Services in Education and Research, which concluded that our study was in accordance with the Personal Data Act (reference number 657413). Because our study solely involved healthcare personnel and did not collect health data, it did not require permission from a regional committee for research ethics. Prior to participating in the focus groups, all individuals were extensively informed, both verbally and through written communication, about the voluntary nature of their involvement, along with the assurance of anonymity, confidentiality, and option to withdraw from the study without providing any reasons. Written informed consent was obtained from all participants before their participation in the focus groups.

The focus group participants reflected on the potentials and limitations of health technology by referring to existing health technologies in their practice, the experiences they acquired during the COVID-19 pandemic, and how they used social media in everyday life. This combination of informal and formal experience with health technology, combined with the many years of experience in home-based pediatric palliative care, gave the participants a broad foundation for discussions. The participants in all groups demonstrated an understanding of pediatric palliative care as a service that offers care, comfort, and emotional support while aiming to improve the quality of life for children with life-limiting or life-threatening conditions and their families.

The participants commonly utilized videoconferencing and electronic patient records as health technology solutions in their work. Additionally, some participants had experience with software applications specifically designed for children with cognitive impairments and limited language ability, as well as software applications used to encourage physical activity.

Balancing in-person interaction and time in pediatric palliative care

The participants emphasized that, within pediatric palliative care, health technology must be employed with caution and should be guided by a clear purpose that weighs the benefits of use against possible distress or harm to the family. The participants deemed it essential to emphasize that, although health technology can serve as a helpful supplement, it could never fully replace the unique competence and invaluable human connection that healthcare personnel provide to the families they serve. They emphasized a sensitive and holistic approach to care, relying on in-person interactions and strong relationships built on trust and empathy as critical aspects that technology cannot replicate.

The personal meetings, which I think are enormously important, should not be fully replaced (by technology) . (Occupational therapist, group 3)

Some participants added that in-person interaction in the children’s homes can provide a valuable break for families dealing with exhausting situations and, therefore, can have a positive impact on the quality of life of both the child and family.

The participants also highlighted the therapeutic value of hands-on evaluation, where healthcare personnel apply their many years of experience and expertise to assess the child’s condition, an expertise that health technology cannot replicate. They further argued that, the utilization of health technology falls short of conveying the essential nonverbal cues related to the child’s well-being.

It can be a small tension in the child’s body that you interpret as something not quite right. Can we try to figure out what it is? A sigh that lasts too long, or an expiration that doesn’t come where you expect that it should. What is it? It is much easier to act as a therapist when you can be physically present. (Physiotherapist, group 5)

The participants were concerned that current health technologies can be burdensome and time-consuming, which takes time away from caring for children and their families. They highlighted specific issues with current electronic medical records and messaging platforms as examples of suboptimal technologies. Their experiences revealed several challenges, such as a lack of integration between different systems, the annoyance of two-factor authentication, connectivity problems with portable devices, and character limits in existing messaging platforms.

There is only a maximum number of characters you can write. (…). And then I have to write four messages because I have to complete what I have to say. And then I have to divide it into four parts. In fact, the system should make everyone’s everyday life more efficient. But it doesn’t because it’s not good enough. (Occupational therapist, group 3)

The citation above illustrates the trouble healthcare personnel faced when trying to use a messaging platform to communicate with parents and serves as an example of how health technology hinders—rather than helps—in providing comprehensive palliative care.

Although in-person interactions were deemed critical, the participants discussed situations in which health technology could be particularly useful. One such example was when healthcare personnel have a cold and there is a risk of infecting the child and family during a home visit, using technology could be a practical alternative instead of canceling the visit.

Exchange of information can improve timely and appropriate care

The participants also discussed the crucial aspects of interdisciplinary collaboration in pediatric palliative care. Although the multidisciplinary nature of the palliative care team was acknowledged as highly beneficial for the child and family, it posed a challenge for the participants to establish efficient collaboration. Ensuring they had the latest updates on the child’s status before home visits was a concern because of the many professionals involved in care delivery and the often-unpredictable illness trajectory of the children. Communication and information exchange between parents, healthcare personnel, educational staff, and personal assistants was viewed as critical. However, the participants recognized a lack of tools that could facilitate effective information flow, which resulted in frequent use of traditional communication methods such as phone calls and emails. These practices were not only reported to be time-consuming but also raised concerns regarding the protection of confidentiality for the child. The participants pointed out that the obstacles to information exchange could lead to delays in necessary care, potentially affecting outcomes for children and their families.

To overcome care fragmentation and promote seamless exchange of information, the participants envisioned one shared digital platform to serve as a central source of information. This platform should allow all care team members access to the child’s health data, daily reports, and advance care plan, regardless of their location or the time of day. As a result, healthcare personnel might be informed and better prepared for home visits.

In situations where there are multiple people involved and handovers are necessary, one shared platform would be beneficial. It would allow for better preparation and understanding of what to expect before meeting the child and family in their home. (Public nurse, Group 1)

The participants progressed in their dialogue by contemplating strategies for how to engage healthcare, educational, and welfare professionals, all of whom deliver services to children and families in their homes, in the exchange of information. They highlighted the potential of one shared digital platform that could bring the various professions together.

Some participants said that they only needed access to crucial information relevant to their work rather than all kinds of information. Others feared accountability for tasks that they might not grasp thoroughly from their professional perspective, emphasizing the need for a comprehensive dialogue before task allocation.

Furthermore, the participants emphasized the potential benefits of features such as chat messages and videoconferencing, underscoring the importance of direct verbal information.

In many cases, what could have been highly beneficial is a group chat. A straightforward, old-fashioned group chat. So much information comes through different channels. (Physiotherapist, group 5)

Communication technologies were praised for their ability to improve meeting efficiency by uniting all care team members, regardless of their location, promoting timely and effective information sharing across the team, and providing easy access to peer support. The participants also recognized the potential of these functionalities to alleviate burdensome traveling for the children and their families.

Some participants suggested that parents should have access to the shared digital platform as well, considering their role as the child’s primary caregivers and important members of the care team. However, others acknowledged that parents could feel overwhelmed with excessive information and that healthcare personnel would hesitate to share all the details with the parents. Furthermore, some participants requested communication technologies that resonate with and engage young people. They emphasized the importance of interactive platforms that enable direct communication with adolescents, free from parental interference, for the exchange of relevant information.

The power of visual documentation in pediatric palliative care

An important aspect consistently discussed across all focus groups was the possibility of supplementing written documentation with photos and videos to facilitate understanding of the child’s health condition in both acute cases and over time. The participants recognized pediatric palliative care as a prolonged duration of care characterized by a complex progression of the child’s condition. The participants suggested that visual documentation could provide more comprehensive and factual firsthand information. This could help reduce the element of personal interpretation and the potential errors that can commonly occur in unspecific written reports. Visual documentation was suggested to ensure accuracy in assessing and managing the child’s condition, function, and progression. The importance of visual documentation was highlighted as particularly relevant in communication with hospital staff, which tended to rely on observations from home care personnel to reassess ongoing treatments.

Do you trust yourself in everything you see? There are also variations from day to day and week to week. So, there’s something about getting that documented for quality assurance. There will be an interpretation anyway, but still, then, several are involved in that interpretation. (Physiotherapist, group 1)

Two focus groups shared their experiences with a software application specifically designed for children with cognitive impairments and limited or no language ability [ 24 ]. This application enabled participants to document information using videos, photos, and textual descriptions.

You get to know the child through the screen in a way, and can see how you do it, when the child is to be lifted into a chair. What does it mean when a child makes this sound or this facial expression? A way for me to get to know the child is through this app . (Child and youth worker, group 2)

The participants discussed, based on their experiences, how visual documentation played a vital role in maintaining care, information exchange, and transitions during personnel shifts as well as being a valuable training resource, particularly for training assistants on the proper utilization of specialized equipment.

Our study aimed to explore healthcare personnel’s perspectives on the potential and limitations of health technology in home-based pediatric palliative care. The themes have underscored that technology can support care but must be carefully integrated to ensure that it adds to the individualized patient-centered approach in pediatric palliative care. Additionally, our analysis emphasized the potential of one shared digital platform that can store and exchange pertinent healthcare information, including multimedia files, enabling healthcare personnel to deliver timely and appropriate home-based pediatric palliative care.

The participants emphasized that pediatric palliative care aims to meet the comprehensive needs of both the child and the family. Our results corresponded with previous research describing that the use of health technology should be balanced with in-person interaction [ 3 , 4 , 5 , 6 ]. However, a systematic review explored how hands-on practitioners adapted to web-based formats during the COVID-19 pandemic and found various methods to overcome the lack of physical closeness [ 25 ]. The methods used by practitioners included improved communication skills for clear instructions, using visual aids like dolls, invoking sensorial memories, utilizing additional tools for engagement, incorporating music and singing, sending materials to participants’ homes, and encouraging the use of emojis or participation in polls [ 25 ]. Nevertheless, the successful implementation of these methods necessitated practitioners dedicating sufficient time for preparation, including briefing individuals who may assume their role in the child’s home as well as ensuring clear communication and setting expectations for effective web-based consultations [ 25 ]. This can be challenging given the time constraints already faced by healthcare personnel in home-based pediatric palliative care. While health technology can offer accessible and time-saving services, particularly for patients living in rural areas with limited access to healthcare resources or facilities [ 25 ], our results also showed that health technology may disrupt or change established practices that place a strong emphasis on in-person interaction and assessment. Future research should incorporate co-design principles for developing health technology [ 6 ] or focus on specific evaluations aligned with the assessment of the child’s condition [ 5 ]. Additionally, addressing healthcare personnel’s knowledge and perceptions may enhance the adaptation and utilization of health technology in home-based pediatric palliative care [ 4 ].

The desire for one shared digital platform for exchanging information across health services was expressed in all focus groups. In this regard, our study can offer unique insights into the potential of health technology, expanding beyond existing research that has primarily focused on videoconferencing [ 3 , 4 , 5 , 6 , 10 , 11 ]. The idea that all participants in the healthcare team can be “connected” by sharing and presenting timely, accurate, and relevant information about the child’s health is in line with Caulfield and Donnelly’s connected health model [ 26 ]. Caulfield and Donnelly underlined the value of information exchange in enhancing care models and introduced the connected health model as a sociotechnical approach that links people, processes, and technology through more intelligent utilization of data, devices, and communication platforms [ 26 , 27 , 28 ]. Research in palliative care has emphasized the information exchange value of electronic health records available across healthcare settings because information exchange improves continuity of care, ensures that patients are treated in line with their wishes, and streamlines clinical workflow [ 9 , 29 , 30 ].

One shared digital platform for the exchange of information about a child’s health and well-being in pediatric palliative care must be user-friendly and functional to be clinically relevant [ 29 , 30 ]. Usability can be secured either by integrating the platform with existing electronic health record systems or replacing current health record systems altogether. Structuring documentation by using templates, order sets, and prompts has been suggested to alleviate the challenge of locating pertinent information [ 9 , 29 , 30 ]. However, previous research has suggested that healthcare personnel can encounter difficulties in rapidly accessing relevant information within electronic health records in the context of palliative care [ 29 ]. The often-long time frame of pediatric palliative care services, combined with the complex interdisciplinary team documentation, may challenge the organization of information within one shared digital platform. Our results underscored the need for user-friendly and functional technology that minimizes the time burden placed on healthcare personnel. Using health technology as a tool to enhance the efficiency of information exchange has also been highlighted as a core potential in previous research [ 29 , 30 ].

In considering user-friendly and functional health technology, it is crucial to evaluate how well these technologies fulfill the specific requirements and needs of healthcare personnel who provide home-based pediatric palliative care [ 6 , 31 ]. The assumption that health technology can effectively address resource efficiency, financial sustainability, and reduced environmental impact of healthcare services [ 32 ] has highlighted the increasing array of health technologies expected to be implemented in the future. Given the dynamic nature of palliative care, regular evaluations are necessary to ensure that current health technology solutions continue to meet the evolving needs of healthcare personnel [ 6 , 31 ]. Engaging healthcare personnel in the evaluation and design process can help improve the usability and functionality of health technology and prevent it from adding additional strain to healthcare services; this involves actively seeking out healthcare personnel’s insights and perspectives to optimize current technology solutions or collaboratively design new ones that effectively support their work tasks [ 6 , 31 ].

Our study uncovered contrasting viewpoints among the participants about whether parents should have access to the suggested shared digital platform. The potential to involve patients in managing their health has also been acknowledged in Caulfield and Donnelly’s connected health model [ 26 ]. Previous research has been limited regarding the experiences of children, parents, and healthcare personnel when sharing day-to-day information and evaluations. However, a systematic review highlighted how parents in pediatric palliative care report a greater sense of control over their family’s care at home and appreciate the ability to stay connected with healthcare personnel in the hospital [ 4 ]. It is important to acknowledge the fundamental importance of parents throughout their children’s lives in terms of communication and decision-making [ 33 ]. As time progresses, most parents develop unique skills in caring for their children, managing symptoms, and administering medication [ 2 ]. Thus, parents become valuable sources of information about their children’s care needs. Enabling access to one shared digital platform can enhance care coordination and ensure a family-centered approach. However, the families of children with palliative care needs often face challenges in terms of time management and responsibilities [ 33 ]. Introducing health technology may bring about additional complexities and demands for these caregivers [ 4 ]. Therefore, it is crucial to acknowledge and prioritize the preferences and needs of each family when considering the provision of access to health information, regardless of the use of health technology. An ideal would be to provide access to one shared digital platform as an optional feature tailored to the specific requirements and preferences of individual families, which is in line with established standards for pediatric palliative care [ 1 ].

In our study, the participants also highlighted the importance of health technology enabling direct communication with children, independent of parental involvement. Today children may feel more comfortable using digital solutions to interact with healthcare personnel. Therefore, research need to explore how health technology can enhance communication and interaction with children in the context of home-based pediatric palliative care. Allowing children to digitally report their health outcomes, can actively involve them in decisions regarding their care and treatment [ 4 , 34 ].

Strengths and limitations

We (JS, KR, HH) have varied clinical experiences in healthcare services which might led us to not prompt participants for further elaboration on their perspectives. However, our expertise with qualitative research methods helped us remain aware that we should not take the participants’ perspectives for granted. Moreover, the focus groups were conducted with a moderator and a secretary, allowing for an effective division of responsibilities, and reducing the risk of missing important perspectives. The focus groups were conducted in different health regions of Norway, ensuring geographical spread and greater variation in the data.

The focus groups primarily included physiotherapists and occupational therapists with their respective work responsibilities. The distinct roles and duties they held potentially restricted the transferability of the results to other professions like nurses or physicians. It is possible that nurses and physicians would have presented different or supplementary perspectives, thereby enhancing the discussions within the focus groups. However, one focus group did not include physiotherapists or occupational therapists, and the topics discussed were similar to those raised in the other groups. In discussing health technology in a general sense, the participants might have overlooked nuances and specificity related to the implementation and integration of specific health technology. However, the themes developed in this study encompassed both well-known aspects of implementing health technology and novel insights, indicating a substantial variation in the dataset.

Our results showed that health technology in home-based pediatric palliative care can present both potential and limitations. Health technology has the potential to improve information sharing and, in turn, strengthen connections within the care team, leading to more proactive and efficient home-based pediatric palliative care. However, it is essential to recognize that close relationship and in-person interaction with the child is crucial in home-based pediatric palliative care and cannot be replaced by technology. Furthermore, there is a need for continuous evaluation to ensure that the health technology being used is effective, reliable, and suitable for the unique nature of home-based pediatric palliative care. Continuous evaluation of health technology is necessary to ensure the specific needs of healthcare personnel providing home-based pediatric palliative care. Future research should address the limitations of current health technology and consider the opinions for information sharing between all parties to maximize the benefits of health technology in enhancing home-based pediatric palliative care.

Data availability

The data transcripts generated and analyzed during our study are not publicly available because of legal restrictions. However, interested individuals may request access to the data from the authors. It is important to note that obtaining the data will require a reasonable request and permission from the Norwegian Agency for Shared Services in Education and Research.

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Acknowledgements

We express our sincere gratitude to the healthcare personnel for generously contributing their time and participating in our study. Their willingness to share their valuable experiences has been essential to our research. Additionally, we would like to extend our appreciation to all individuals who helped us in the recruitment process and thank Linda Johanne Martinsen for her help as the secretary in focus group four.

Our work was funded by the Research Council of Norway, grant nr. 314850.

Open access funding provided by OsloMet - Oslo Metropolitan University

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Our study was a result of significant contributions from all three authors. They collectively played essential roles in designing the study, collecting and analyzing the data, and interpreting the results. JS took the lead in drafting the manuscript, while KR and HH provided critical revisions and edits. The final manuscript was reviewed and approved by all three authors, who granted their consent for its publication.

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Schröder, J., Riiser, K. & Holmen, H. Healthcare personnel’s perspectives on health technology in home-based pediatric palliative care: a qualitative study. BMC Palliat Care 23 , 137 (2024). https://doi.org/10.1186/s12904-024-01464-w

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v.56(1); 2023 Jan

Qualitative Research in Healthcare: Necessity and Characteristics

1 Department of Preventive Medicine, Ulsan University Hospital, University of Ulsan College of Medicine, Ulsan, Korea

2 Ulsan Metropolitan City Public Health Policy’s Institute, Ulsan, Korea

3 Department of Nursing, Chung-Ang University, Seoul, Korea

Eun Young Choi

4 College of Nursing, Sungshin Women’s University, Seoul, Korea

Seung Gyeong Jang

5 Department of Preventive Medicine, University of Ulsan College of Medicine, Seoul, Korea

Quantitative and qualitative research explore various social phenomena using different methods. However, there has been a tendency to treat quantitative studies using complicated statistical techniques as more scientific and superior, whereas relatively few qualitative studies have been conducted in the medical and healthcare fields. This review aimed to provide a proper understanding of qualitative research. This review examined the characteristics of quantitative and qualitative research to help researchers select the appropriate qualitative research methodology. Qualitative research is applicable in following cases: (1) when an exploratory approach is required on a topic that is not well known, (2) when something cannot be explained fully with quantitative research, (3) when it is necessary to newly present a specific view on a research topic that is difficult to explain with existing views, (4) when it is inappropriate to present the rationale or theoretical proposition for designing hypotheses, as in quantitative research, and (5) when conducting research that requires detailed descriptive writing with literary expressions. Qualitative research is conducted in the following order: (1) selection of a research topic and question, (2) selection of a theoretical framework and methods, (3) literature analysis, (4) selection of the research participants and data collection methods, (5) data analysis and description of findings, and (6) research validation. This review can contribute to the more active use of qualitative research in healthcare, and the findings are expected to instill a proper understanding of qualitative research in researchers who review qualitative research reports and papers.

Graphical abstract

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INTRODUCTION

The definition of research varies among studies and scholars, and it is difficult to devise a single definition. The Oxford English Dictionary defines research as “a careful study of a subject, especially in order to discover new facts or information about it” [ 1 ], while Webster’s Dictionary defines research as “studious inquiry or examination - especially: investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws” [ 2 ]. Moreover, research is broadly defined as the process of solving unsolved problems to broaden human knowledge [ 3 ]. A more thorough understanding of research can be gained by examining its types and reasons for conducting it.

The reasons for conducting research may include practical goals, such as degree attainment, job promotion, and financial profit. Research may be based on one’s own academic curiosity or aspiration or guided by professors or other supervisors. Academic research aims can be further divided into the following: (1) accurately describing an object or phenomenon, (2) identifying general laws and establishing well-designed theories for understanding and explaining a certain phenomenon, (3) predicting future events based on laws and theories, and (4) manipulating causes and conditions to induce or prevent a phenomenon [ 3 ].

The appropriate type of research must be selected based on the purpose and topic. Basic research has the primary purpose of expanding the existing knowledge base through new discoveries, while applied research aims to solve a real problem. Descriptive research attempts to factually present comparisons and interpretations of findings based on analyses of the characteristics, progression, or relationships of a certain phenomenon by manipulating the variables or controlling the conditions. Experimental or analytical research attempts to identify causal relationships between variables through experiments by arbitrarily manipulating the variables or controlling the conditions [ 3 ]. In addition, research can be quantitative or qualitative, depending on the data collection and analytical methods. Quantitative research relies on statistical analyses of quantitative data obtained primarily through investigation and experiment, while qualitative research uses specific methodologies to analyze qualitative data obtained through participant observations and in-depth interviews. However, as these types of research are not polar opposites and the criteria for classifying research types are unclear, there is some degree of methodological overlap.

What is more important than differentiating types of research is identifying the appropriate type of research to gain a better understanding of specific questions and improve problems encountered by people in life. An appropriate research type or methodology is essential to apply findings reliably. However, quantitative research based on the philosophical ideas of empiricism and positivism has been the mainstay in the field of healthcare, with academic advancement achieved through the application of various statistical techniques to quantitative data [ 4 ]. In particular, there has been a tendency to treat complicated statistical techniques as more scientific and superior, with few qualitative studies in not only clinical medicine, but also primary care and social medicine, which are relatively strongly influenced by the social sciences [ 5 , 6 ].

Quantitative and qualitative research use different ways of exploring various social phenomena. Both research methodologies can be applied individually or in combination based on the research topic, with mixed quantitative and qualitative research methodologies becoming more widespread in recent years [ 7 ]. Applying these 2 methods through a virtuous cycle of integration from a complementary perspective can provide a more accurate understanding of human phenomena and solutions to real-world problems.

This review aimed to provide a proper understanding of qualitative research to assist researchers in selecting the appropriate research methodology. Specifically, this review examined the characteristics of quantitative and qualitative research, the applicability of qualitative research, and the data sources collected and analyzed in qualitative research.

COMPARISON OF QUALITATIVE AND QUANTITATIVE RESEARCH

A clearer understanding of qualitative research can be obtained by comparing qualitative and quantitative research, with which people are generally familiar [ 8 , 9 ]. Quantitative research focuses on testing the validity of hypotheses established by the researcher to identify the causal relationships of a specific phenomenon and discovering laws to predict that phenomenon ( Table 1 ). Therefore, it emphasizes controlling the influence of variables that may interfere with the process of identifying causality and laws. In contrast, qualitative research aims to discover and explore new hypotheses or theories based on a deep understanding of the meaning of a specific phenomenon. As such, qualitative research attempts to accept various environmental factors naturally. In quantitative research, importance is placed on the researcher acting as an outsider to take an objective view by keeping a certain distance from the research subject. In contrast, qualitative research encourages looking inside the research subjects to understand them deeply, while also emphasizing the need for researchers to take an intersubjective view that is formed and shared based on a mutual understanding with the research subjects.

Comparison of methodological characteristics between quantitative research and qualitative research

The data used in quantitative research can be expressed as numerical values, and data accumulated through questionnaire surveys and tests are often used in analyses. In contrast, qualitative research uses narrative data with words and images collected through participant observations, in-depth interviews, and focus group discussions used in the analyses. Quantitative research data are measured repeatedly to enhance their reliability, while the analyses of such data focus on superficial aspects of the phenomenon of interest. Qualitative research instead focuses on obtaining deep and rich data and aims to identify the specific contents, dynamics, and processes inherent within the phenomenon and situation.

There are clear distinctions in the advantages, disadvantages, and goals of quantitative and qualitative research. On one hand, quantitative research has the advantages of reliability and generalizability of the findings, and advances in data collection and analysis methods have increased reliability and generalizability. However, quantitative research presents difficulties with an in-depth analysis of dynamic phenomena that cannot be expressed by numbers alone and interpreting the results analyzed in terms numbers. On the other hand, qualitative research has the advantage of validity, which refers to how accurately or appropriately a phenomenon was measured. However, qualitative research also has the disadvantage of weak generalizability, which determines whether an observed phenomenon applies to other cases.

APPLICATIONS OF QUALITATIVE RESEARCH AND ITS USEFULNESS IN THE HEALTHCARE FIELD

Qualitative research cannot be the solution to all problems. A specific methodology should not be applied to all situations. Therefore, researchers need to have a good understanding of the applicability of qualitative research. Generally, qualitative research is applicable in following cases: (1) when an exploratory approach is required on a topic that is not well known, (2) when something cannot be explained fully with quantitative research, (3) when it is necessary to newly present a specific view on a research topic that is difficult to explain with existing views, (4) when it is inappropriate to present the rationale or theoretical proposition for designing hypotheses, as in quantitative research, and (5) when conducting research that requires detailed descriptive writing with literary expressions [ 7 ]. In particular, qualitative research is useful for opening new fields of research, such as important topics that have not been previously examined or whose significance has not been recognized. Moreover, qualitative research is advantageous for examining known topics from a fresh perspective.

In the healthcare field, qualitative research is conducted on various topics considering its characteristics and strengths. Quantitative research, which focuses on hypothesis validation, such as the superiority of specific treatments or the effectiveness of specific policies, and the generalization of findings, has been the primary research methodology in the field of healthcare. Qualitative research has been mostly applied for studies such as subjective disease experiences and attitudes with respect to health-related patient quality of life [ 10 - 12 ], experiences and perceptions regarding the use of healthcare services [ 13 - 15 ], and assessments of the quality of care [ 16 , 17 ]. Moreover, qualitative research has focused on vulnerable populations, such as the elderly, children, disabled [ 18 - 20 ], minorities, and socially underprivileged with specific experiences [ 21 , 22 ].

For instance, patient safety is considered a pillar of quality of care, which is an aspect of healthcare with increasing international interest. The ultimate goal of patient safety research should be the improvement of patient safety, for which it is necessary to identify the root causes of potential errors and adverse events. In such cases, qualitative rather than quantitative research is often required. It is also important to identify whether there are any barriers when applying measures for enhancing patient safety to clinical practice. To identify such barriers, qualitative research is necessary to observe healthcare workers directly applying the solutions step-by-step during each process, determine whether there are difficulties in applying the solutions to relevant stakeholders, and ask how to improve the process if there are difficulties.

Patient safety is a very broad topic, and patient safety issues could be categorized into preventing, recognizing, and responding to patient safety issues based on related metrics [ 23 ]. Responding to issues that pertain to the handling of patient safety incidents that have already occurred has received relatively less interest than other categories of research on this topic, particularly in Korea. Until 2017, almost no research was conducted on the experiences of and difficulties faced by patients and healthcare workers who have been involved in patient safety incidents. This topic can be investigated using qualitative research.

A study in Korea investigated the physical and mental suffering experienced during the process of accepting disability and medical litigation by a patient who became disabled due to medical malpractice [ 21 ]. Another qualitative case study was conducted with participants who lost a family member due to a medical accident and identified psychological suffering due to the incident, as well as secondary psychological suffering during the medical litigation process, which increased the expandability of qualitative research findings [ 24 ]. A quantitative study based on these findings confirmed that people who experienced patient safety incidents had negative responses after the incidents and a high likelihood of sleep or eating disorders, depending on their responses [ 25 ].

A study that applied the grounded theory to examine the second victim phenomenon, referring to healthcare workers who have experienced patient safety incidents, and presented the response stages experienced by second victims demonstrated the strength of qualitative research [ 26 ]. Subsequently, other studies used questionnaire surveys on physicians and nurses to quantify the physical, mental, and work-related difficulties experienced by second victims [ 27 , 28 ]. As such, qualitative research alone can produce significant findings; however, combining quantitative and qualitative research produces a synergistic effect. In the healthcare field, which remains unfamiliar with qualitative research, combining these 2 methodologies could both enhance the validity of research findings and facilitate open discussions with other researchers [ 29 ].

In addition, qualitative research has been used for diverse sub-topics, including the experiences of patients and guardians with respect to various diseases (such as cancer, myocardial infarction, chronic obstructive pulmonary disease, depression, falls, and dementia), awareness of treatment for diabetes and hypertension, the experiences of physicians and nurses when they come in contact with medical staff, awareness of community health environments, experiences of medical service utilization by the general public in medically vulnerable areas, the general public’s awareness of vaccination policies, the health issues of people with special types of employment (such as delivery and call center workers), and the unmet healthcare needs of persons with vision or hearing impairment.

GENERAL WORKFLOW OF QUALITATIVE RESEARCH

Rather than focusing on deriving objective information, qualitative research aims to discern the quality of a specific phenomenon, obtaining answers to “why” and “how” questions. Qualitative research aims to collect data multi-dimensionally and provide in-depth explanations of the phenomenon being researched. Ultimately, the purpose of qualitative research is set to help researchers gain an understanding of the research topic and reveal the implications of the research findings. Therefore, qualitative research is generally conducted in the following order: (1) selection of a research topic and question, (2) selection of a theoretical framework and methods, (3) literature analysis, (4) selection of the research participants (or participation target) and data collection methods, (5) data analysis and description of findings, and (6) research validation ( Figure 1 ) [ 30 ]. However, unlike quantitative research, in which hypothesis setting and testing take place unidirectionally, a major characteristic of qualitative research is that the process is reversible and research methods can be modified. In other words, the research topic and question could change during the literature analysis process, and theoretical and analytical methods could change during the data collection process.

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General workflow of qualitative research.

Selection of a Research Topic and Question

As with any research, the first step in qualitative research is the selection of a research topic and question. Qualitative researchers can select a research topic based on their interests from daily life as a researcher, their interests in issues within the healthcare field, and ideas from the literature, such as academic journals. The research question represents a more specific aspect of the research topic. Before specifically starting to conduct research based on a research topic, the researcher should clarify what is being researched and determine what research would be desirable. When selecting a research topic and question, the research should ask: is the research executable, are the research topic and question worth researching, and is this a research question that a researcher would want to research?

Selection of Theoretical Framework and Methods

A theoretical framework refers to the thoughts or attitudes that a researcher has about the phenomenon being researched. Selecting the theoretical framework first could help qualitative researchers not only in selecting the research purpose and problem, but also in carrying out various processes, including an exploration of the precedent literature and research, selection of the data type to be collected, data analysis, and description of findings. In qualitative research, theoretical frameworks are based on philosophical ideas, which affect the selection of specific qualitative research methods. Representative qualitative research methods include the grounded theory, which is suitable for achieving the goal of developing a theory that can explain the processes involved in the phenomenon being researched; ethnographic study, which is suitable for research topics that attempt to identify and interpret the culture of a specific group; phenomenology, which is suitable for research topics that attempt to identify the nature of research participants’ experiences or the phenomenon being researched; case studies, which aim to gain an in-depth understanding of a case that has unique characteristics and can be differentiated from other cases; action research, which aims to find solutions to problems faced by research participants, with the researchers taking the same position as the participants; and narrative research, which is suitable for research topics that attempt to interpret the entire life or individual experiences contained within the stories of research participants. Other methodologies include photovoice research, consensual qualitative research, and auto-ethnographic research.

Literature Analysis

Literature analysis results can be helpful in specifically selecting the research problem, theoretical framework, and research methods. The literature analysis process compels qualitative researchers to contemplate the new knowledge that their research will add to the academic field. A comprehensive literature analysis is encouraged both in qualitative and quantitative research, and if the prior literature related to the subject to be studied is insufficient, it is sometimes evaluated as having low research potential or research value. Some have claimed that a formal literature review should not be performed before the collection of field data, as it could create bias, thereby interfering with the investigation. However, as the qualitative research process is cyclic rather than unidirectional, the majority believes that a literature review can be performed at any time. Moreover, an ethical review prior to starting the research is a requirement; therefore, the research protocol must be prepared and submitted for review and approval prior to conducting the research. To prepare research protocols, the existing literature must be analyzed at least to a certain degree. Nonetheless, qualitative researchers must keep in mind that their emotions, bias, and expectations may interject themselves during the literature review process and should strive to minimize any bias to ensure the validity of the research.

Selection of the Research Participants and Data Collection Methods

The subjects of qualitative research are not necessarily humans. It is more important to find the research subject(s) from which the most in-depth answers to the research problem can be obtained. However, the subjects in most qualitative studies are humans, as most research question focus on humans. Therefore, it is important to obtain research participants with sufficient knowledge, experience, and attitudes to provide the most appropriate answers to the research question. Quantitative research, which views generalizability as a key research goal, emphasizes the selection of research participants (i.e., the research sample that can represent the study’s population of interest), whereas qualitative research emphasizes finding research participants who can best describe and demonstrate the phenomenon of interest.

In qualitative research, the participant selection method is referred to as purposeful sampling (or purposive sampling), which can be divided into various types. Sampling methods have various advantages, disadvantages, and characteristics. For instance, unique sampling (extreme case sampling) has the advantage of being able to obtain interesting research findings by researching phenomena that have previously received little or no interest, and the disadvantage of deriving research findings that are interesting to only some readers if the research is conducted on an overly unique situation. Maximum variation sampling, also referred to as theoretical sampling, is commonly used in qualitative research based on the grounded theory. Selecting the appropriate participant sampling method that suits the purpose of research is crucial ( Table 2 ).

Sampling methods of selecting research participants in qualitative research

Once the researcher has decided how to select study participants, the data collection methods must be determined. Just as with participant sampling, various data collection methods are available, all of which have various advantages and disadvantages; therefore, the method must be selected based on the research question and circumstances. Unlike quantitative research, which usually uses a single data source and data collection method, the use of multiple data sources and data collection methods is encouraged in qualitative research [ 30 ]. Using a single data source and data collection method could cause data collection to be skewed by researcher bias; therefore, using multiple data sources and data collection methods is ideal. In qualitative research, the following data types are commonly used: (1) interview data obtained through one-on-one in-depth interviews and focus group discussions, (2) observational data from various observation levels, (3) documented data collected from personal or public documents, and (4) image data, such as photographs and videos.

Interview data are the most commonly used data source in qualitative research [ 31 ]. In qualitative research, an interview refers to communication that takes place based on a clear sense of purpose of acquiring certain information, unlike conversations that typically take place in daily life. The level of data acquired through interviews varies significantly depending on the researcher’s personal qualifications and abilities, as well as his or her level of interest and knowledge regarding the research topic. Therefore, interviewers must be trained to go beyond simply identifying the clearly expressed experiences of research participants to exploring their inner experiences and emotions [ 32 ]. Interview data can be classified based on the level of structuralization of the data collection method, sample size, and interview method. The characteristics of each type of interview are given in Table 3 .

Detailed types of interview methods according to the characteristics of in-depth interviews and focus group discussion

Observations, which represent a key data collection method in anthropology, refer to a series of actions taken by the researcher in search of a deep understanding by systematically examining the appearances of research participants that take place in natural situations [ 33 ]. Observations can be categorized as participant and non-participant, insider and outsider, disguised and undisguised, short- and long-term, and structured and unstructured. However, a line cannot be drawn clearly to differentiate these categories, and the degree of each varies along a single spectrum. Therefore, it is necessary for a qualitative researcher to select the appropriate data collection method based on the circumstances and characteristics of the research topic.

Various types of document data can be used in qualitative research. Personal documents include diaries, letters, and autobiographies, while public documents include legal documents, public announcements, and civil documents. Online documents include emails and blog or bulletin board postings, while other documents include graffiti. All these document types may be used as data sources in qualitative research. In addition, image data acquired by the research participant or researcher, such as photographs and videos, serve as useful data sources in qualitative research. Such data sources are relatively objective and easily accessible, while they contain a significant amount of qualitative meaning despite the low acquisition cost. While some data may have been collected for research purposes, other data may not have been originally produced for research. Therefore, the researcher must not distort the original information contained in the data source and must verify the accuracy and authenticity of the data source in advance [ 30 ].

This review examined the characteristics of qualitative research to help researchers select the appropriate qualitative research methodology and identify situations suitable for qualitative research in the healthcare field. In addition, this paper analyzed the selection of the research topic and problem, selection of the theoretical framework and methods, literature analysis, and selection of the research participants and data collection methods. A forthcoming paper will discuss more specific details regarding other qualitative research methodologies, such as data analysis, description of findings, and research validation. This review can contribute to the more active use of qualitative research in the healthcare field, and the findings are expected to instill a proper understanding of qualitative research in researchers who review and judge qualitative research reports and papers.

Ethics Statement

Since this study used secondary data source, we did not seek approval from the institutional review board. We also did not have to ask for the consent of the participants.

Acknowledgments

CONFLICT OF INTEREST

The authors have no conflicts of interest associated with the material presented in this paper.

AUTHOR CONTRIBUTIONS

Conceptualization: Pyo J, Lee W, Choi EY, Jang SG, Ock M. Data curation: Pyo J, Ock M. Formal analysis: Pyo J, Ock M. Funding acquisition: None. Validation: Lee W, Choi EY, Jang SG. Writing - original draft: Pyo J, Ock M. Writing - review & editing: Pyo J, Lee W, Choi EY, Jang SG, Ock M.

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There are at least three primary applications of theory in qualitative research: (1) theory of research paradigm and method (Glesne, 2011), (2) theory building as a result of data collection (Jaccard & Jacoby, 2010), and (3) theory as a framework to guide the study (Anfara & Mertz, 2015). Differentiation and clarification between these ...
Healthcare personnel's perspectives on health technology in home-based
Background In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has highlighted the role of healthcare personnel when utilizing health technology in home-based pediatric palliative care, but specific knowledge ...
The qualitative orientation in medical education research
Abstract. Qualitative research is very important in educational research as it addresses the "how" and "why" research questions and enables deeper understanding of experiences, phenomena and context. Qualitative research allows you to ask questions that cannot be easily put into numbers to understand human experience.
Sustainability
Environmental challenges demand local-level engagement. This study delves into the often overlooked entrepreneurial role played by "off-the-map" local authorities in environmental policy. By examining factors influencing Local Environmental Policy Initiatives (LEPIs), including demographic and socioeconomic characteristics, environmental impact, and promotion strategies, we offer a ...
Qualitative Research in Healthcare: Necessity and Characteristics
In quantitative research, importance is placed on the researcher acting as an outsider to take an objective view by keeping a certain distance from the research subject. ... This topic can be investigated using qualitative research. A study in Korea investigated the physical and mental suffering experienced during the process of accepting ...

Significance of the Study – Examples and Writing Guide

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Muhammad Hassan

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31 Interpretation In Qualitative Research: What, Why, How

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?

In What Ways Can a Framework for Interpretation Strategies Support Qualitative Researchers across Multiple Methodological and Paradigmatic Views?

TRAVEL, a Comprehensive Approach to Qualitative Interpretation

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30 years of youth system of care lessons learned – a qualitative study of Hawaiʻi’s partnership with the Substance Abuse and Mental Health Services Administration

Conclusions

System of care principle development and application

System of care award themes

Interagency collaboration

Youth and family voice

Limitations

Data availability

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