reporting findings in qualitative research

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Basic definitions, coreq: content and rationale (see tables  1 ).

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Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups

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Allison Tong, Peter Sainsbury, Jonathan Craig, Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups, International Journal for Quality in Health Care , Volume 19, Issue 6, December 2007, Pages 349–357, https://doi.org/10.1093/intqhc/mzm042

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Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design.

To develop a checklist for explicit and comprehensive reporting of qualitative studies (indepth interviews and focus groups).

We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed.

Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting.

The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.

Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers in health care. Poorly designed studies and inadequate reporting can lead to inappropriate application of qualitative research in decision-making, health care, health policy and future research.

Formal reporting guidelines have been developed for randomized controlled trials (CONSORT) [ 1 ], diagnostic test studies (STARD), meta-analysis of RCTs (QUOROM) [ 2 ], observational studies (STROBE) [ 3 ] and meta-analyses of observational studies (MOOSE) [ 4 ]. These aim to improve the quality of reporting these study types and allow readers to better understand the design, conduct, analysis and findings of published studies. This process allows users of published research to be more fuller informed when they critically appraise studies relevant to each checklist and decide upon applicability of research findings to their local settings. Empiric studies have shown that the use of the CONSORT statement is associated with improvements in the quality of reports of randomized controlled trials [ 5 ]. Systematic reviews of qualitative research almost always show that key aspects of study design are not reported, and so there is a clear need for a CONSORT-equivalent for qualitative research [ 6 ].

The Uniform Requirements for Manuscripts Submitted to Biomedical Journals published by the International Committee of Medical Journal Editors (ICMJE) do not provide reporting guidelines for qualitative studies. Of all the mainstream biomedical journals (Fig.  1 ), only the British Medical Journal (BMJ) has criteria for reviewing qualitative research. However, the guidelines for authors specifically record that the checklist is not routinely used. In addition, the checklist is not comprehensive and does not provide specific guidance to assess some of the criteria. Although checklists for critical appraisal are available for qualitative research, there is no widely endorsed reporting framework for any type of qualitative research [ 7 ].

Development of the COREQ Checklist. *References [ 26 , 27 ], † References [ 6 , 28–32 ], ‡ Author and reviewer guidelines provided by BMJ, JAMA, Lancet, Annals of Internal Medicine, NEJM.

We have developed a formal reporting checklist for in-depth interviews and focus groups, the most common methods for data collection in qualitative health research. These two methods are particularly useful for eliciting patient and consumer priorities and needs to improve the quality of health care [ 8 ]. The checklist aims to promote complete and transparent reporting among researchers and indirectly improve the rigor, comprehensiveness and credibility of interview and focus-group studies.

Qualitative studies use non-quantitative methods to contribute new knowledge and to provide new perspectives in health care. Although qualitative research encompasses a broad range of study methods, most qualitative research publications in health care describe the use of interviews and focus groups [ 8 ].

In-depth and semi-structured interviews explore the experiences of participants and the meanings they attribute to them. Researchers encourage participants to talk about issues pertinent to the research question by asking open-ended questions, usually in one-to-one interviews. The interviewer might re-word, re-order or clarify the questions to further investigate topics introduced by the respondent. In qualitative health research, in-depth interviews are often used to study the experiences and meanings of disease, and to explore personal and sensitive themes. They can also help to identify potentially modifiable factors for improving health care [ 9 ].

Focus groups

Focus groups are semi-structured discussions with groups of 4–12 people that aim to explore a specific set of issues [ 10 ]. Moderators often commence the focus group by asking broad questions about the topic of interest, before asking the focal questions. Although participants individually answer the facilitator's questions, they are encouraged to talk and interact with each other [ 11 ]. This technique is built on the notion that the group interaction encourages respondents to explore and clarify individual and shared perspectives [ 12 ]. Focus groups are used to explore views on health issues, programs, interventions and research.

Development of a checklist

Search strategy.

We performed a comprehensive search for published checklists used to assess or review qualitative studies, and guidelines for reporting qualitative studies in: Medline (1966—Week 1 April 2006), CINAHL (1982—Week 3 April 2006), Cochrane and Campbell protocols, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications. We identified the terms used to index the relevant articles already in our possession and performed a broad search using those search terms. The electronic databases were searched using terms and text words for research (standards), health services research (standards) and qualitative studies (evaluation). Duplicate checklists and detailed instructions for conducting and analysing qualitative studies were excluded.

Data extraction

From each of the included publications, we extracted all criteria for assessing or reporting qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. We recorded the frequency of each item across all the publications. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. (see Tables  2–4 )

Within each domain we simplified all relevant items by removing duplicates and those that were ambiguous, too broadly defined, not specific to qualitative research, or impractical to assess. Where necessary, the remaining items were rephrased for clarity. Based upon consensus among the authors, two new items that were considered relevant for reporting qualitative research were added. The two new items were identifying the authors who conducted the interview or focus group and reporting the presence of non-participants during the interview or focus group. The COREQ checklist for explicit and comprehensive reporting of qualitative studies consists of 32 criteria, with a descriptor to supplement each item (Table  1 ).

Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist

Items included in 22 published checklists: Research team and reflexivity domain

a Other publications, b Systematic review of qualitative studies; BMJ, British Medical Journal—editor's checklist for appraising qualitative research); •, item included in the checklist.

Items included in 22 published checklists: Study design

a Other publications, b Systematic review of qualitative studies; BMJ, British Medical Journal—editor's checklist for appraising qualitative research; •, item included in the checklist.

Items included in 22 published checklists: Analysis and reporting

a Other publications, b Systematic review of qualitative studies; BMJ, British Medical Journal—editor's checklist for appraising qualitative research, •, item included in the checklist.

Domain 1: research team and reflexivity

(i) Personal characteristics: Qualitative researchers closely engage with the research process and participants and are therefore unable to completely avoid personal bias. Instead researchers should recognize and clarify for readers their identity, credentials, occupation, gender, experience and training. Subsequently this improves the credibility of the findings by giving readers the ability to assess how these factors might have influenced the researchers' observations and interpretations [ 13–15 ].

(ii) Relationship with participants: The relationship and extent of interaction between the researcher and their participants should be described as it can have an effect on the participants' responses and also on the researchers' understanding of the phenomena [ 16 ]. For example, a clinician–researcher may have a deep understanding of patients' issues but their involvement in patient care may inhibit frank discussion with patient–participants when patients believe that their responses will affect their treatment. For transparency, the investigator should identify and state their assumptions and personal interests in the research topic.

Domain 2: study design

(i) Theoretical framework: Researchers should clarify the theoretical frameworks underpinning their study so readers can understand how the researchers explored their research questions and aims. Theoretical frameworks in qualitative research include: grounded theory, to build theories from the data; ethnography, to understand the culture of groups with shared characteristics; phenomenology, to describe the meaning and significance of experiences; discourse analysis, to analyse linguistic expression; and content analysis, to systematically organize data into a structured format [ 10 ].

(ii) Participant selection: Researchers should report how participants were selected. Usually purposive sampling is used which involves selecting participants who share particular characteristics and have the potential to provide rich, relevant and diverse data pertinent to the research question [ 13 , 17 ]. Convenience sampling is less optimal because it may fail to capture important perspectives from difficult-to-reach people [ 16 ]. Rigorous attempts to recruit participants and reasons for non-participation should be stated to reduce the likelihood of making unsupported statements [ 18 ]. Researchers should report the sample size of their study to enable readers to assess the diversity of perspectives included.

(iii) Setting: Researchers should describe the context in which the data were collected because it illuminates why participants responded in a particular way. For instance, participants might be more reserved and feel disempowered talking in a hospital setting. The presence of non-participants during interviews or focus groups should be reported as this can also affect the opinions expressed by participants. For example, parent interviewees might be reluctant to talk on sensitive topics if their children are present. Participant characteristics, such as basic demographic data, should be reported so readers can consider the relevance of the findings and interpretations to their own situation. This also allows readers to assess whether perspectives from different groups were explored and compared, such as patients and health care providers [ 13 , 19 ].

(iv) Data collection: The questions and prompts used in data collection should be provided to enhance the readers' understanding of the researcher's focus and to give readers the ability to assess whether participants were encouraged to openly convey their viewpoints. Researchers should also report whether repeat interviews were conducted as this can influence the rapport developed between the researcher and participants and affect the richness of data obtained. The method of recording the participants' words should be reported. Generally, audio recording and transcription more accurately reflect the participants' views than contemporaneous researcher notes, more so if participants checked their own transcript for accuracy [ 19–21 ]. Reasons for not audio recording should be provided. In addition, field notes maintain contextual details and non-verbal expressions for data analysis and interpretation [ 19 , 22 ]. Duration of the interview or focus group should be reported as this affects the amount of data obtained. Researchers should also clarify whether participants were recruited until no new relevant knowledge was being obtained from new participants (data saturation) [ 23 , 24 ].

Domain 3: analysis and findings

(i) Data analysis: Specifying the use of multiple coders or other methods of researcher triangulation can indicate a broader and more complex understanding of the phenomenon. The credibility of the findings can be assessed if the process of coding (selecting significant sections from participant statements), and the derivation and identification of themes are made explicit. Descriptions of coding and memoing demonstrate how the researchers perceived, examined and developed their understanding of the data [ 17 , 19 ]. Researchers sometimes use software packages to assist with storage, searching and coding of qualitative data. In addition, obtaining feedback from participants on the research findings adds validity to the researcher's interpretations by ensuring that the participants' own meanings and perspectives are represented and not curtailed by the researchers' own agenda and knowledge [ 23 ].

(ii) Reporting: If supporting quotations are provided, researchers should include quotations from different participants to add transparency and trustworthiness to their findings and interpretations of the data [ 17 ]. Readers should be able to assess the consistency between the data presented and the study findings, including the both major and minor themes. Summary findings, interpretations and theories generated should be clearly presented in qualitative research publications.

The COREQ checklist was developed to promote explicit and comprehensive reporting of qualitative studies (interviews and focus groups). The checklist consists of items specific to reporting qualitative studies and precludes generic criteria that are applicable to all types of research reports. COREQ is a comprehensive checklist that covers necessary components of study design, which should be reported. The criteria included in the checklist can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.

At present, we acknowledge there is no empiric basis that shows that the introduction of COREQ will improve the quality of reporting of qualitative research. However this is no different than when CONSORT, QUOROM and other reporting checklists were introduced. Subsequent research has shown that these checklists have improved the quality of reporting of study types relevant to each checklist [ 5 , 25 ], and we believe that the effect of COREQ is likely to be similar. Despite differences in the objectives and methods of quantitative and qualitative methods, the underlying aim of transparency in research methods and, at the least, the theoretical possibility of the reader being able to duplicate the study methods should be the aims of both methodological approaches. There is a perception among research funding agencies, clinicians and policy makers, that qualitative research is ‘second class’ research. Initiatives like COREQ are designed to encourage improvement in the quality of reporting of qualitative studies, which will indirectly lead to improved conduct, and greater recognition of qualitative research as inherently equal scientific endeavor compared with quantitative research that is used to assess the quality and safety of health care. We invite readers to comment on COREQ to improve the checklist.

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How To Write The Results/Findings Chapter

For qualitative studies (dissertations & theses).

By: Jenna Crossley (PhD). Expert Reviewed By: Dr. Eunice Rautenbach | August 2021

So, you’ve collected and analysed your qualitative data, and it’s time to write up your results chapter. But where do you start? In this post, we’ll guide you through the qualitative results chapter (also called the findings chapter), step by step. 

Overview: Qualitative Results Chapter

• What (exactly) the qualitative results chapter is
• What to include in your results chapter
• How to write up your results chapter
• A few tips and tricks to help you along the way
• Free results chapter template

What exactly is the results chapter?

The results chapter in a dissertation or thesis (or any formal academic research piece) is where you objectively and neutrally present the findings of your qualitative analysis (or analyses if you used multiple qualitative analysis methods ). This chapter can sometimes be combined with the discussion chapter (where you interpret the data and discuss its meaning), depending on your university’s preference.  We’ll treat the two chapters as separate, as that’s the most common approach.

In contrast to a quantitative results chapter that presents numbers and statistics, a qualitative results chapter presents data primarily in the form of words . But this doesn’t mean that a qualitative study can’t have quantitative elements – you could, for example, present the number of times a theme or topic pops up in your data, depending on the analysis method(s) you adopt.

Adding a quantitative element to your study can add some rigour, which strengthens your results by providing more evidence for your claims. This is particularly common when using qualitative content analysis. Keep in mind though that qualitative research aims to achieve depth, richness and identify nuances , so don’t get tunnel vision by focusing on the numbers. They’re just cream on top in a qualitative analysis.

So, to recap, the results chapter is where you objectively present the findings of your analysis, without interpreting them (you’ll save that for the discussion chapter). With that out the way, let’s take a look at what you should include in your results chapter.

What should you include in the results chapter?

As we’ve mentioned, your qualitative results chapter should purely present and describe your results , not interpret them in relation to the existing literature or your research questions . Any speculations or discussion about the implications of your findings should be reserved for your discussion chapter.

In your results chapter, you’ll want to talk about your analysis findings and whether or not they support your hypotheses (if you have any). Naturally, the exact contents of your results chapter will depend on which qualitative analysis method (or methods) you use. For example, if you were to use thematic analysis, you’d detail the themes identified in your analysis, using extracts from the transcripts or text to support your claims.

While you do need to present your analysis findings in some detail, you should avoid dumping large amounts of raw data in this chapter. Instead, focus on presenting the key findings and using a handful of select quotes or text extracts to support each finding . The reams of data and analysis can be relegated to your appendices.

While it’s tempting to include every last detail you found in your qualitative analysis, it is important to make sure that you report only that which is relevant to your research aims, objectives and research questions .  Always keep these three components, as well as your hypotheses (if you have any) front of mind when writing the chapter and use them as a filter to decide what’s relevant and what’s not.

Need a helping hand?

How do I write the results chapter?

Now that we’ve covered the basics, it’s time to look at how to structure your chapter. Broadly speaking, the results chapter needs to contain three core components – the introduction, the body and the concluding summary. Let’s take a look at each of these.

Section 1: Introduction

The first step is to craft a brief introduction to the chapter. This intro is vital as it provides some context for your findings. In your introduction, you should begin by reiterating your problem statement and research questions and highlight the purpose of your research . Make sure that you spell this out for the reader so that the rest of your chapter is well contextualised.

The next step is to briefly outline the structure of your results chapter. In other words, explain what’s included in the chapter and what the reader can expect. In the results chapter, you want to tell a story that is coherent, flows logically, and is easy to follow , so make sure that you plan your structure out well and convey that structure (at a high level), so that your reader is well oriented.

The introduction section shouldn’t be lengthy. Two or three short paragraphs should be more than adequate. It is merely an introduction and overview, not a summary of the chapter.

Pro Tip – To help you structure your chapter, it can be useful to set up an initial draft with (sub)section headings so that you’re able to easily (re)arrange parts of your chapter. This will also help your reader to follow your results and give your chapter some coherence.  Be sure to use level-based heading styles (e.g. Heading 1, 2, 3 styles) to help the reader differentiate between levels visually. You can find these options in Word (example below).

Section 2: Body

Before we get started on what to include in the body of your chapter, it’s vital to remember that a results section should be completely objective and descriptive, not interpretive . So, be careful not to use words such as, “suggests” or “implies”, as these usually accompany some form of interpretation – that’s reserved for your discussion chapter.

The structure of your body section is very important , so make sure that you plan it out well. When planning out your qualitative results chapter, create sections and subsections so that you can maintain the flow of the story you’re trying to tell. Be sure to systematically and consistently describe each portion of results. Try to adopt a standardised structure for each portion so that you achieve a high level of consistency throughout the chapter.

For qualitative studies, results chapters tend to be structured according to themes , which makes it easier for readers to follow. However, keep in mind that not all results chapters have to be structured in this manner. For example, if you’re conducting a longitudinal study, you may want to structure your chapter chronologically. Similarly, you might structure this chapter based on your theoretical framework . The exact structure of your chapter will depend on the nature of your study , especially your research questions.

As you work through the body of your chapter, make sure that you use quotes to substantiate every one of your claims . You can present these quotes in italics to differentiate them from your own words. A general rule of thumb is to use at least two pieces of evidence per claim, and these should be linked directly to your data. Also, remember that you need to include all relevant results , not just the ones that support your assumptions or initial leanings.

In addition to including quotes, you can also link your claims to the data by using appendices , which you should reference throughout your text. When you reference, make sure that you include both the name/number of the appendix , as well as the line(s) from which you drew your data.

As referencing styles can vary greatly, be sure to look up the appendix referencing conventions of your university’s prescribed style (e.g. APA , Harvard, etc) and keep this consistent throughout your chapter.

Section 3: Concluding summary

The concluding summary is very important because it summarises your key findings and lays the foundation for the discussion chapter . Keep in mind that some readers may skip directly to this section (from the introduction section), so make sure that it can be read and understood well in isolation.

In this section, you need to remind the reader of the key findings. That is, the results that directly relate to your research questions and that you will build upon in your discussion chapter. Remember, your reader has digested a lot of information in this chapter, so you need to use this section to remind them of the most important takeaways.

Importantly, the concluding summary should not present any new information and should only describe what you’ve already presented in your chapter. Keep it concise – you’re not summarising the whole chapter, just the essentials.

Tips for writing an A-grade results chapter

Now that you’ve got a clear picture of what the qualitative results chapter is all about, here are some quick tips and reminders to help you craft a high-quality chapter:

• Your results chapter should be written in the past tense . You’ve done the work already, so you want to tell the reader what you found , not what you are currently finding .
• Make sure that you review your work multiple times and check that every claim is adequately backed up by evidence . Aim for at least two examples per claim, and make use of an appendix to reference these.
• When writing up your results, make sure that you stick to only what is relevant . Don’t waste time on data that are not relevant to your research objectives and research questions.
• Use headings and subheadings to create an intuitive, easy to follow piece of writing. Make use of Microsoft Word’s “heading styles” and be sure to use them consistently.
• When referring to numerical data, tables and figures can provide a useful visual aid. When using these, make sure that they can be read and understood independent of your body text (i.e. that they can stand-alone). To this end, use clear, concise labels for each of your tables or figures and make use of colours to code indicate differences or hierarchy.
• Similarly, when you’re writing up your chapter, it can be useful to highlight topics and themes in different colours . This can help you to differentiate between your data if you get a bit overwhelmed and will also help you to ensure that your results flow logically and coherently.

If you have any questions, leave a comment below and we’ll do our best to help. If you’d like 1-on-1 help with your results chapter (or any chapter of your dissertation or thesis), check out our private dissertation coaching service here or book a free initial consultation to discuss how we can help you.

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This post was based on one of our popular Research Bootcamps . If you're working on a research project, you'll definitely want to check this out ...

21 Comments

This was extremely helpful. Thanks a lot guys

Hi, thanks for the great research support platform created by the gradcoach team!

I wanted to ask- While “suggests” or “implies” are interpretive terms, what terms could we use for the results chapter? Could you share some examples of descriptive terms?

I think that instead of saying, ‘The data suggested, or The data implied,’ you can say, ‘The Data showed or revealed, or illustrated or outlined’…If interview data, you may say Jane Doe illuminated or elaborated, or Jane Doe described… or Jane Doe expressed or stated.

I found this article very useful. Thank you very much for the outstanding work you are doing.

What if i have 3 different interviewees answering the same interview questions? Should i then present the results in form of the table with the division on the 3 perspectives or rather give a results in form of the text and highlight who said what?

I think this tabular representation of results is a great idea. I am doing it too along with the text. Thanks

That was helpful was struggling to separate the discussion from the findings

this was very useful, Thank you.

Very helpful, I am confident to write my results chapter now.

It is so helpful! It is a good job. Thank you very much!

Very useful, well explained. Many thanks.

Hello, I appreciate the way you provided a supportive comments about qualitative results presenting tips

I loved this! It explains everything needed, and it has helped me better organize my thoughts. What words should I not use while writing my results section, other than subjective ones.

Thanks a lot, it is really helpful

Thank you so much dear, i really appropriate your nice explanations about this.

Thank you so much for this! I was wondering if anyone could help with how to prproperly integrate quotations (Excerpts) from interviews in the finding chapter in a qualitative research. Please GradCoach, address this issue and provide examples.

what if I’m not doing any interviews myself and all the information is coming from case studies that have already done the research.

Very helpful thank you.

This was very helpful as I was wondering how to structure this part of my dissertation, to include the quotes… Thanks for this explanation

This is very helpful, thanks! I am required to write up my results chapters with the discussion in each of them – any tips and tricks for this strategy?

For qualitative studies, can the findings be structured according to the Research questions? Thank you.

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Standards for Reporting Qualitative Research

A synthesis of recommendations.

O’Brien, Bridget C. PhD; Harris, Ilene B. PhD; Beckman, Thomas J. MD; Reed, Darcy A. MD, MPH; Cook, David A. MD, MHPE

Dr. O’Brien is assistant professor, Department of Medicine and Office of Research and Development in Medical Education, University of California, San Francisco, School of Medicine, San Francisco, California.

Dr. Harris is professor and head, Department of Medical Education, University of Illinois at Chicago College of Medicine, Chicago, Illinois.

Dr. Beckman is professor of medicine and medical education, Department of Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota.

Dr. Reed is associate professor of medicine and medical education, Department of Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota.

Dr. Cook is associate director, Mayo Clinic Online Learning, research chair, Mayo Multidisciplinary Simulation Center, and professor of medicine and medical education, Mayo Clinic College of Medicine, Rochester, Minnesota.

Funding/Support: This study was funded in part by a research review grant from the Society for Directors of Research in Medical Education.

Other disclosures: None reported.

Ethical approval: Reported as not applicable.

Disclaimer: The funding agency had no role in the study design, analysis, interpretation, writing of the manuscript, or decision to submit the manuscript for publication.

Supplemental digital content for this article is available at https://links.lww.com/ACADMED/A218 .

Correspondence should be addressed to Dr. O’Brien, Office of Research and Development in Medical Education, UCSF School of Medicine, Box 3202, 1855 Folsom St., Suite 200, San Francisco, CA 94143-3202; e-mail: [email protected] .

Purpose 

Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.

Method 

The authors identified guidelines, reporting standards, and critical appraisal criteria for qualitative research by searching PubMed, Web of Science, and Google through July 2013; reviewing the reference lists of retrieved sources; and contacting experts. Specifically, two authors reviewed a sample of sources to generate an initial set of items that were potentially important in reporting qualitative research. Through an iterative process of reviewing sources, modifying the set of items, and coding all sources for items, the authors prepared a near-final list of items and descriptions and sent this list to five external reviewers for feedback. The final items and descriptions included in the reporting standards reflect this feedback.

Results 

The Standards for Reporting Qualitative Research (SRQR) consists of 21 items. The authors define and explain key elements of each item and provide examples from recently published articles to illustrate ways in which the standards can be met.

Conclusions 

The SRQR aims to improve the transparency of all aspects of qualitative research by providing clear standards for reporting qualitative research. These standards will assist authors during manuscript preparation, editors and reviewers in evaluating a manuscript for potential publication, and readers when critically appraising, applying, and synthesizing study findings.

Qualitative research contributes to the literature in many disciplines by describing, interpreting, and generating theories about social interactions and individual experiences as they occur in natural, rather than experimental, situations. 1–3 Some recent examples include studies of professional dilemmas, 4 medical students’ early experiences of workplace learning, 5 patients’ experiences of disease and interventions, 6–8 and patients’ perspectives about incident disclosures. 9 The purpose of qualitative research is to understand the perspectives/experiences of individuals or groups and the contexts in which these perspectives or experiences are situated. 1 , 2 , 10

Qualitative research is increasingly common and valued in the medical and medical education literature. 1 , 10–13 However, the quality of such research can be difficult to evaluate because of incomplete reporting of key elements. 14 , 15 Quality is multifaceted and includes consideration of the importance of the research question, the rigor of the research methods, the appropriateness and salience of the inferences, and the clarity and completeness of reporting. 16 , 17 Although there is much debate about standards for methodological rigor in qualitative research, 13 , 14 , 18–20 there is widespread agreement about the need for clear and complete reporting. 14 , 21 , 22 Optimal reporting would enable editors, reviewers, other researchers, and practitioners to critically appraise qualitative studies and apply and synthesize the results. One important step in improving the quality of reporting is to formulate and define clear reporting standards.

Authors have proposed guidelines for the quality of qualitative research, including those in the fields of medical education, 23–25 clinical and health services research, 26–28 and general education research. 29 , 30 Yet in nearly all cases, the authors do not describe how the guidelines were created, and often fail to distinguish reporting quality from the other facets of quality (e.g., the research question or methods). Several authors suggest standards for reporting qualitative research, 15 , 20 , 29–33 but their articles focus on a subset of qualitative data collection methods (e.g., interviews), fail to explain how the authors developed the reporting criteria, narrowly construe qualitative research (e.g., thematic analysis) in ways that may exclude other approaches, and/or lack specific examples to help others see how the standards might be achieved. Thus, there remains a compelling need for defensible and broadly applicable standards for reporting qualitative research.

We designed and carried out the present study to formulate and define standards for reporting qualitative research through a rigorous synthesis of published articles and expert recommendations.

We formulated standards for reporting qualitative research by using a rigorous and systematic approach in which we reviewed previously proposed recommendations by experts in qualitative methods. Our research team consisted of two PhD researchers and one physician with formal training and experience in qualitative methods, and two physicians with experience, but no formal training, in qualitative methods.

We first identified previously proposed recommendations by searching PubMed, Web of Science, and Google using combinations of terms such as “qualitative methods,” “qualitative research,” “qualitative guidelines,” “qualitative standards,” and “critical appraisal” and by reviewing the reference lists of retrieved sources, reviewing the Equator Network, 22 and contacting experts. We conducted our first search in January 2007 and our last search in July 2013. Most recommendations were published in peer-reviewed journals, but some were available only on the Internet, and one was an interim draft from a national organization. We report the full set of the 40 sources reviewed in Supplemental Digital Appendix 1, found at https://links.lww.com/ACADMED/A218 .

Two of us (B.O., I.H.) reviewed an initial sample of sources to generate a comprehensive list of items that were potentially important in reporting qualitative research (Draft A). All of us then worked in pairs to review all sources and code the presence or absence of each item in a given source. From Draft A, we then distilled a shorter list (Draft B) by identifying core concepts and combining related items, taking into account the number of times each item appeared in these sources. We then compared the items in Draft B with material in the original sources to check for missing concepts, modify accordingly, and add explanatory definitions to create a prefinal list of items (Draft C).

We circulated Draft C to five experienced qualitative researchers (see the acknowledgments) for review. We asked them to note any omitted or redundant items and to suggest improvements to the wording to enhance clarity and relevance across a broad spectrum of qualitative inquiry. In response to their reviews, we consolidated some items and made minor revisions to the wording of labels and definitions to create the final set of reporting standards—the Standards for Reporting Qualitative Research (SRQR)—summarized in Table 1 .

To explicate how the final set of standards reflect the material in the original sources, two of us (B.O., D.A.C.) selected by consensus the 25 most complete sources of recommendations and identified which standards reflected the concepts found in each original source (see Table 2 ).

The SRQR is a list of 21 items that we consider essential for complete, transparent reporting of qualitative research (see Table 1 ). As explained above, we developed these items through a rigorous synthesis of prior recommendations and concepts from published sources (see Table 2 ; see also Supplemental Digital Appendix 1, found at https://links.lww.com/ACADMED/A218 ) and expert review. These 21 items provide a framework and recommendations for reporting qualitative studies. Given the wide range of qualitative approaches and methodologies, we attempted to select items with broad relevance.

The SRQR includes the article’s title and abstract (items 1 and 2); problem formulation and research question (items 3 and 4); research design and methods of data collection and analysis (items 5 through 15); results, interpretation, discussion, and integration (items 16 through 19); and other information (items 20 and 21). Supplemental Digital Appendix 2, found at https://links.lww.com/ACADMED/A218 , contains a detailed explanation of each item, along with examples from recently published qualitative studies. Below, we briefly describe the standards, with a particular focus on those unique to qualitative research.

Titles, abstracts, and introductory material. Reporting standards for titles, abstracts, and introductory material (problem formulation, research question) in qualitative research are very similar to those for quantitative research, except that the results reported in the abstract are narrative rather than numerical, and authors rarely present a specific hypothesis. 29 , 30

Research design and methods. Reporting on research design and methods of data collection and analysis highlights several distinctive features of qualitative research. Many of the criteria we reviewed focus not only on identifying and describing all aspects of the methods (e.g., approach, researcher characteristics and role, sampling strategy, context, data collection and analysis) but also on justifying each choice. 13 , 14 This ensures that authors make their assumptions and decisions transparent to readers. This standard is less commonly expected in quantitative research, perhaps because most quantitative researchers share positivist assumptions and generally agree about standards for rigor of various study designs and sampling techniques. 14 Just as quantitative reporting standards encourage authors to describe how they implemented methods such as randomization and measurement validity, several qualitative reporting criteria recommend that authors describe how they implemented a presumably familiar technique in their study rather than simply mentioning the technique. 10 , 14 , 32 For example, authors often state that data collection occurred until saturation, with no mention of how they defined and recognized saturation. Similarly, authors often mention an “iterative process,” with minimal description of the nature of the iterations. The SRQR emphasizes the importance of explaining and elaborating on these important processes. Nearly all of the original sources recommended describing the characteristics and role of the researcher (i.e., reflexivity). Members of the research team often form relationships with participants, and analytic processes are highly interpretive in most qualitative research. Therefore, reviewers and readers must understand how these relationships and the researchers’ perspectives and assumptions influenced data collection and interpretation. 15 , 23 , 26 , 34

Results. Reporting of qualitative research results should identify the main analytic findings. Often, these findings involve interpretation and contextualization, which represent a departure from the tradition in quantitative studies of objectively reporting results. The presentation of results often varies with the specific qualitative approach and methodology; thus, rigid rules for reporting qualitative findings are inappropriate. However, authors should provide evidence (e.g., examples, quotes, or text excerpts) to substantiate the main analytic findings. 20 , 29

Discussion. The discussion of qualitative results will generally include connections to existing literature and/or theoretical or conceptual frameworks, the scope and boundaries of the results (transferability), and study limitations. 10–12 , 28 In some qualitative traditions, the results and discussion may not have distinct boundaries; we recommend that authors include the substance of each item regardless of the section in which it appears.

The purpose of the SRQR is to improve the quality of reporting of qualitative research studies. We hope that these 21 recommended reporting standards will assist authors during manuscript preparation, editors and reviewers in evaluating a manuscript for potential publication, and readers when critically appraising, applying, and synthesizing study findings. As with other reporting guidelines, 35–37 we anticipate that the SRQR will evolve as it is applied and evaluated in practice. We welcome suggestions for refinement.

Qualitative studies explore “how?” and “why?” questions related to social or human problems or phenomena. 10 , 38 Purposes of qualitative studies include understanding meaning from participants’ perspectives (How do they interpret or make sense of an event, situation, or action?); understanding the nature and influence of the context surrounding events or actions; generating theories about new or poorly understood events, situations, or actions; and understanding the processes that led to a desired (or undesired) outcome. 38 Many different approaches (e.g., ethnography, phenomenology, discourse analysis, case study, grounded theory) and methodologies (e.g., interviews, focus groups, observation, analysis of documents) may be used in qualitative research, each with its own assumptions and traditions. 1 , 2 A strength of many qualitative approaches and methodologies is the opportunity for flexibility and adaptability throughout the data collection and analysis process. We endeavored to maintain that flexibility by intentionally defining items to avoid favoring one approach or method over others. As such, we trust that the SRQR will support all approaches and methods of qualitative research by making reports more explicit and transparent, while still allowing investigators the flexibility to use the study design and reporting format most appropriate to their study. It may be helpful, in the future, to develop approach-specific extensions of the SRQR, as has been done for guidelines in quantitative research (e.g., the CONSORT extensions). 37

Limitations, strengths, and boundaries

We deliberately avoided recommendations that define methodological rigor, and therefore it would be inappropriate to use the SRQR to judge the quality of research methods and findings. Many of the original sources from which we derived the SRQR were intended as criteria for methodological rigor or critical appraisal rather than reporting; for these, we inferred the information that would be needed to evaluate the criterion. Occasionally, we found conflicting recommendations in the literature (e.g., recommending specific techniques such as multiple coders or member checking to demonstrate trustworthiness); we resolved these conflicting recommendations through selection of the most frequent recommendations and by consensus among ourselves.

Some qualitative researchers have described the limitations of checklists as a means to improve methodological rigor. 13 We nonetheless believe that a checklist for reporting standards will help to enhance the transparency of qualitative research studies and thereby advance the field. 29 , 39

Strengths of this work include the grounding in previously published criteria, the diversity of experience and perspectives among us, and critical review by experts in three countries.

Implications and application

Similar to other reporting guidelines, 35–37 the SRQR may be viewed as a starting point for defining reporting standards in qualitative research. Although our personal experience lies in health professions education, the SRQR is based on sources originating in diverse health care and non-health-care fields. We intentionally crafted the SRQR to include various paradigms, approaches, and methodologies used in qualitative research. The elaborations offered in Supplemental Digital Appendix 2 (see https://links.lww.com/ACADMED/A218 ) should provide sufficient description and examples to enable both novice and experienced researchers to use these standards. Thus, the SRQR should apply broadly across disciplines, methodologies, topics, study participants, and users.

The SRQR items reflect information essential for inclusion in a qualitative research report, but should not be viewed as prescribing a rigid format or standardized content. Individual study needs, author preferences, and journal requirements may necessitate a different sequence or organization than that shown in Table 1 . Journal word restrictions may prevent a full exposition of each item, and the relative importance of a given item will vary by study. Thus, although all 21 standards would ideally be reflected in any given report, authors should prioritize attention to those items that are most relevant to the given study, findings, context, and readership.

Application of the SRQR need not be limited to the writing phase of a given study. These standards can assist researchers in planning qualitative studies and in the careful documentation of processes and decisions made throughout the study. By considering these recommendations early on, researchers may be more likely to identify the paradigm and approach most appropriate to their research, consider and use strategies for ensuring trustworthiness, and keep track of procedures and decisions.

Journal editors can facilitate the review process by providing the SRQR to reviewers and applying its standards, thus establishing more explicit expectations for qualitative studies. Although the recommendations do not address or advocate specific approaches, methods, or quality standards, they do help reviewers identify information that is missing from manuscripts.

As authors and editors apply the SRQR, readers will have more complete information about a given study, thus facilitating judgments about the trustworthiness, relevance, and transferability of findings to their own context and/or to related literature. Complete reporting will also facilitate meaningful synthesis of qualitative results across studies. 40 We anticipate that such transparency will, over time, help to identify previously unappreciated gaps in the rigor and relevance of research findings. Investigators, editors, and educators can then work to remedy these deficiencies and, thereby, enhance the overall quality of qualitative research.

Acknowledgments: The authors thank Margaret Bearman, PhD, Calvin Chou, MD, PhD, Karen Hauer, MD, Ayelet Kuper, MD, DPhil, Arianne Teherani, PhD, and participants in the UCSF weekly educational scholarship works-in-progress group (ESCape) for critically reviewing the Standards for Reporting Qualitative Research.

References Cited Only in Table 2

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Standards for reporting qualitative research: a synthesis of recommendations

Affiliation.

• 1 Dr. O'Brien is assistant professor, Department of Medicine and Office of Research and Development in Medical Education, University of California, San Francisco, School of Medicine, San Francisco, California. Dr. Harris is professor and head, Department of Medical Education, University of Illinois at Chicago College of Medicine, Chicago, Illinois. Dr. Beckman is professor of medicine and medical education, Department of Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota. Dr. Reed is associate professor of medicine and medical education, Department of Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota. Dr. Cook is associate director, Mayo Clinic Online Learning, research chair, Mayo Multidisciplinary Simulation Center, and professor of medicine and medical education, Mayo Clinic College of Medicine, Rochester, Minnesota.
• PMID: 24979285
• DOI: 10.1097/ACM.0000000000000388

Purpose: Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods.

Method: The authors identified guidelines, reporting standards, and critical appraisal criteria for qualitative research by searching PubMed, Web of Science, and Google through July 2013; reviewing the reference lists of retrieved sources; and contacting experts. Specifically, two authors reviewed a sample of sources to generate an initial set of items that were potentially important in reporting qualitative research. Through an iterative process of reviewing sources, modifying the set of items, and coding all sources for items, the authors prepared a near-final list of items and descriptions and sent this list to five external reviewers for feedback. The final items and descriptions included in the reporting standards reflect this feedback.

Results: The Standards for Reporting Qualitative Research (SRQR) consists of 21 items. The authors define and explain key elements of each item and provide examples from recently published articles to illustrate ways in which the standards can be met.

Conclusions: The SRQR aims to improve the transparency of all aspects of qualitative research by providing clear standards for reporting qualitative research. These standards will assist authors during manuscript preparation, editors and reviewers in evaluating a manuscript for potential publication, and readers when critically appraising, applying, and synthesizing study findings.

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Considerations in Qualitative Research Reporting: A Guide for Authors Preparing Articles for Sex Roles

• Feminist Forum Review Article
• Published: 21 May 2018
• Volume 79 , pages 125–135, ( 2018 )

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• Sheryl L. Chatfield 1  

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Qualitative inquiry is frequently used to deepen understanding, improve empathy, and inspire social change, making it particularly appropriate for researchers using feminist, critical or other frameworks that encourage readers to consider issues of power and privilege. Gender researchers using qualitative inquiry are able to select from within a multitude of qualitative approaches to address the purpose of any given research study. The availability of so many approaches makes it challenging to provide one set of “best practices” for qualitative inquiry. The purpose of the present paper is to address this challenge by providing a combination of general and approach-specific guidelines for authors who aspire to write qualitative original research articles for publication in Sex Roles . I begin by providing broad guidelines, follow with approach-specific considerations, and finish the paper with advice related to common practices in qualitative research reporting. I also provide a sample of authoritative sources authors might wish to consult and cite in their research papers.

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Sex and gender considerations in reporting guidelines for health research: a systematic review

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How gender theories are used in contemporary public health research

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Thanks to Jennifer McGarry, as well as Karen Elizabeth Dill-Shackleford, Russell Luyt, and C.J. Pascoe, for their valuable input on drafts of the present paper.

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• Am J Pharm Educ
• v.74(8); 2010 Oct 11

Presenting and Evaluating Qualitative Research

The purpose of this paper is to help authors to think about ways to present qualitative research papers in the American Journal of Pharmaceutical Education . It also discusses methods for reviewers to assess the rigour, quality, and usefulness of qualitative research. Examples of different ways to present data from interviews, observations, and focus groups are included. The paper concludes with guidance for publishing qualitative research and a checklist for authors and reviewers.

INTRODUCTION

Policy and practice decisions, including those in education, increasingly are informed by findings from qualitative as well as quantitative research. Qualitative research is useful to policymakers because it often describes the settings in which policies will be implemented. Qualitative research is also useful to both pharmacy practitioners and pharmacy academics who are involved in researching educational issues in both universities and practice and in developing teaching and learning.

Qualitative research involves the collection, analysis, and interpretation of data that are not easily reduced to numbers. These data relate to the social world and the concepts and behaviors of people within it. Qualitative research can be found in all social sciences and in the applied fields that derive from them, for example, research in health services, nursing, and pharmacy. 1 It looks at X in terms of how X varies in different circumstances rather than how big is X or how many Xs are there? 2 Textbooks often subdivide research into qualitative and quantitative approaches, furthering the common assumption that there are fundamental differences between the 2 approaches. With pharmacy educators who have been trained in the natural and clinical sciences, there is often a tendency to embrace quantitative research, perhaps due to familiarity. A growing consensus is emerging that sees both qualitative and quantitative approaches as useful to answering research questions and understanding the world. Increasingly mixed methods research is being carried out where the researcher explicitly combines the quantitative and qualitative aspects of the study. 3 , 4

Like healthcare, education involves complex human interactions that can rarely be studied or explained in simple terms. Complex educational situations demand complex understanding; thus, the scope of educational research can be extended by the use of qualitative methods. Qualitative research can sometimes provide a better understanding of the nature of educational problems and thus add to insights into teaching and learning in a number of contexts. For example, at the University of Nottingham, we conducted in-depth interviews with pharmacists to determine their perceptions of continuing professional development and who had influenced their learning. We also have used a case study approach using observation of practice and in-depth interviews to explore physiotherapists' views of influences on their leaning in practice. We have conducted in-depth interviews with a variety of stakeholders in Malawi, Africa, to explore the issues surrounding pharmacy academic capacity building. A colleague has interviewed and conducted focus groups with students to explore cultural issues as part of a joint Nottingham-Malaysia pharmacy degree program. Another colleague has interviewed pharmacists and patients regarding their expectations before and after clinic appointments and then observed pharmacist-patient communication in clinics and assessed it using the Calgary Cambridge model in order to develop recommendations for communication skills training. 5 We have also performed documentary analysis on curriculum data to compare pharmacist and nurse supplementary prescribing courses in the United Kingdom.

It is important to choose the most appropriate methods for what is being investigated. Qualitative research is not appropriate to answer every research question and researchers need to think carefully about their objectives. Do they wish to study a particular phenomenon in depth (eg, students' perceptions of studying in a different culture)? Or are they more interested in making standardized comparisons and accounting for variance (eg, examining differences in examination grades after changing the way the content of a module is taught). Clearly a quantitative approach would be more appropriate in the last example. As with any research project, a clear research objective has to be identified to know which methods should be applied.

Types of qualitative data include:

• Audio recordings and transcripts from in-depth or semi-structured interviews
• Structured interview questionnaires containing substantial open comments including a substantial number of responses to open comment items.
• Audio recordings and transcripts from focus group sessions.
• Field notes (notes taken by the researcher while in the field [setting] being studied)
• Video recordings (eg, lecture delivery, class assignments, laboratory performance)
• Case study notes
• Documents (reports, meeting minutes, e-mails)
• Diaries, video diaries
• Observation notes
• Press clippings
• Photographs

RIGOUR IN QUALITATIVE RESEARCH

Qualitative research is often criticized as biased, small scale, anecdotal, and/or lacking rigor; however, when it is carried out properly it is unbiased, in depth, valid, reliable, credible and rigorous. In qualitative research, there needs to be a way of assessing the “extent to which claims are supported by convincing evidence.” 1 Although the terms reliability and validity traditionally have been associated with quantitative research, increasingly they are being seen as important concepts in qualitative research as well. Examining the data for reliability and validity assesses both the objectivity and credibility of the research. Validity relates to the honesty and genuineness of the research data, while reliability relates to the reproducibility and stability of the data.

The validity of research findings refers to the extent to which the findings are an accurate representation of the phenomena they are intended to represent. The reliability of a study refers to the reproducibility of the findings. Validity can be substantiated by a number of techniques including triangulation use of contradictory evidence, respondent validation, and constant comparison. Triangulation is using 2 or more methods to study the same phenomenon. Contradictory evidence, often known as deviant cases, must be sought out, examined, and accounted for in the analysis to ensure that researcher bias does not interfere with or alter their perception of the data and any insights offered. Respondent validation, which is allowing participants to read through the data and analyses and provide feedback on the researchers' interpretations of their responses, provides researchers with a method of checking for inconsistencies, challenges the researchers' assumptions, and provides them with an opportunity to re-analyze their data. The use of constant comparison means that one piece of data (for example, an interview) is compared with previous data and not considered on its own, enabling researchers to treat the data as a whole rather than fragmenting it. Constant comparison also enables the researcher to identify emerging/unanticipated themes within the research project.

STRENGTHS AND LIMITATIONS OF QUALITATIVE RESEARCH

Qualitative researchers have been criticized for overusing interviews and focus groups at the expense of other methods such as ethnography, observation, documentary analysis, case studies, and conversational analysis. Qualitative research has numerous strengths when properly conducted.

Strengths of Qualitative Research

• Issues can be examined in detail and in depth.
• Interviews are not restricted to specific questions and can be guided/redirected by the researcher in real time.
• The research framework and direction can be quickly revised as new information emerges.
• The data based on human experience that is obtained is powerful and sometimes more compelling than quantitative data.
• Subtleties and complexities about the research subjects and/or topic are discovered that are often missed by more positivistic enquiries.
• Data usually are collected from a few cases or individuals so findings cannot be generalized to a larger population. Findings can however be transferable to another setting.

Limitations of Qualitative Research

• Research quality is heavily dependent on the individual skills of the researcher and more easily influenced by the researcher's personal biases and idiosyncrasies.
• Rigor is more difficult to maintain, assess, and demonstrate.
• The volume of data makes analysis and interpretation time consuming.
• It is sometimes not as well understood and accepted as quantitative research within the scientific community
• The researcher's presence during data gathering, which is often unavoidable in qualitative research, can affect the subjects' responses.
• Issues of anonymity and confidentiality can present problems when presenting findings
• Findings can be more difficult and time consuming to characterize in a visual way.

PRESENTATION OF QUALITATIVE RESEARCH FINDINGS

The following extracts are examples of how qualitative data might be presented:

Data From an Interview.

The following is an example of how to present and discuss a quote from an interview.

The researcher should select quotes that are poignant and/or most representative of the research findings. Including large portions of an interview in a research paper is not necessary and often tedious for the reader. The setting and speakers should be established in the text at the end of the quote.

The student describes how he had used deep learning in a dispensing module. He was able to draw on learning from a previous module, “I found that while using the e learning programme I was able to apply the knowledge and skills that I had gained in last year's diseases and goals of treatment module.” (interviewee 22, male)

This is an excerpt from an article on curriculum reform that used interviews 5 :

The first question was, “Without the accreditation mandate, how much of this curriculum reform would have been attempted?” According to respondents, accreditation played a significant role in prompting the broad-based curricular change, and their comments revealed a nuanced view. Most indicated that the change would likely have occurred even without the mandate from the accreditation process: “It reflects where the profession wants to be … training a professional who wants to take on more responsibility.” However, they also commented that “if it were not mandated, it could have been a very difficult road.” Or it “would have happened, but much later.” The change would more likely have been incremental, “evolutionary,” or far more limited in its scope. “Accreditation tipped the balance” was the way one person phrased it. “Nobody got serious until the accrediting body said it would no longer accredit programs that did not change.”

Data From Observations

The following example is some data taken from observation of pharmacist patient consultations using the Calgary Cambridge guide. 6 , 7 The data are first presented and a discussion follows:

Pharmacist: We will soon be starting a stop smoking clinic. Patient: Is the interview over now? Pharmacist: No this is part of it. (Laughs) You can't tell me to bog off (sic) yet. (pause) We will be starting a stop smoking service here, Patient: Yes. Pharmacist: with one-to-one and we will be able to help you or try to help you. If you want it. In this example, the pharmacist has picked up from the patient's reaction to the stop smoking clinic that she is not receptive to advice about giving up smoking at this time; in fact she would rather end the consultation. The pharmacist draws on his prior relationship with the patient and makes use of a joke to lighten the tone. He feels his message is important enough to persevere but he presents the information in a succinct and non-pressurised way. His final comment of “If you want it” is important as this makes it clear that he is not putting any pressure on the patient to take up this offer. This extract shows that some patient cues were picked up, and appropriately dealt with, but this was not the case in all examples.

Data From Focus Groups

This excerpt from a study involving 11 focus groups illustrates how findings are presented using representative quotes from focus group participants. 8

Those pharmacists who were initially familiar with CPD endorsed the model for their peers, and suggested it had made a meaningful difference in the way they viewed their own practice. In virtually all focus groups sessions, pharmacists familiar with and supportive of the CPD paradigm had worked in collaborative practice environments such as hospital pharmacy practice. For these pharmacists, the major advantage of CPD was the linking of workplace learning with continuous education. One pharmacist stated, “It's amazing how much I have to learn every day, when I work as a pharmacist. With [the learning portfolio] it helps to show how much learning we all do, every day. It's kind of satisfying to look it over and see how much you accomplish.” Within many of the learning portfolio-sharing sessions, debates emerged regarding the true value of traditional continuing education and its outcome in changing an individual's practice. While participants appreciated the opportunity for social and professional networking inherent in some forms of traditional CE, most eventually conceded that the academic value of most CE programming was limited by the lack of a systematic process for following-up and implementing new learning in the workplace. “Well it's nice to go to these [continuing education] events, but really, I don't know how useful they are. You go, you sit, you listen, but then, well I at least forget.”

The following is an extract from a focus group (conducted by the author) with first-year pharmacy students about community placements. It illustrates how focus groups provide a chance for participants to discuss issues on which they might disagree.

Interviewer: So you are saying that you would prefer health related placements? Student 1: Not exactly so long as I could be developing my communication skill. Student 2: Yes but I still think the more health related the placement is the more I'll gain from it. Student 3: I disagree because other people related skills are useful and you may learn those from taking part in a community project like building a garden. Interviewer: So would you prefer a mixture of health and non health related community placements?

GUIDANCE FOR PUBLISHING QUALITATIVE RESEARCH

Qualitative research is becoming increasingly accepted and published in pharmacy and medical journals. Some journals and publishers have guidelines for presenting qualitative research, for example, the British Medical Journal 9 and Biomedcentral . 10 Medical Education published a useful series of articles on qualitative research. 11 Some of the important issues that should be considered by authors, reviewers and editors when publishing qualitative research are discussed below.

Introduction.

A good introduction provides a brief overview of the manuscript, including the research question and a statement justifying the research question and the reasons for using qualitative research methods. This section also should provide background information, including relevant literature from pharmacy, medicine, and other health professions, as well as literature from the field of education that addresses similar issues. Any specific educational or research terminology used in the manuscript should be defined in the introduction.

The methods section should clearly state and justify why the particular method, for example, face to face semistructured interviews, was chosen. The method should be outlined and illustrated with examples such as the interview questions, focusing exercises, observation criteria, etc. The criteria for selecting the study participants should then be explained and justified. The way in which the participants were recruited and by whom also must be stated. A brief explanation/description should be included of those who were invited to participate but chose not to. It is important to consider “fair dealing,” ie, whether the research design explicitly incorporates a wide range of different perspectives so that the viewpoint of 1 group is never presented as if it represents the sole truth about any situation. The process by which ethical and or research/institutional governance approval was obtained should be described and cited.

The study sample and the research setting should be described. Sampling differs between qualitative and quantitative studies. In quantitative survey studies, it is important to select probability samples so that statistics can be used to provide generalizations to the population from which the sample was drawn. Qualitative research necessitates having a small sample because of the detailed and intensive work required for the study. So sample sizes are not calculated using mathematical rules and probability statistics are not applied. Instead qualitative researchers should describe their sample in terms of characteristics and relevance to the wider population. Purposive sampling is common in qualitative research. Particular individuals are chosen with characteristics relevant to the study who are thought will be most informative. Purposive sampling also may be used to produce maximum variation within a sample. Participants being chosen based for example, on year of study, gender, place of work, etc. Representative samples also may be used, for example, 20 students from each of 6 schools of pharmacy. Convenience samples involve the researcher choosing those who are either most accessible or most willing to take part. This may be fine for exploratory studies; however, this form of sampling may be biased and unrepresentative of the population in question. Theoretical sampling uses insights gained from previous research to inform sample selection for a new study. The method for gaining informed consent from the participants should be described, as well as how anonymity and confidentiality of subjects were guaranteed. The method of recording, eg, audio or video recording, should be noted, along with procedures used for transcribing the data.

Data Analysis.

A description of how the data were analyzed also should be included. Was computer-aided qualitative data analysis software such as NVivo (QSR International, Cambridge, MA) used? Arrival at “data saturation” or the end of data collection should then be described and justified. A good rule when considering how much information to include is that readers should have been given enough information to be able to carry out similar research themselves.

One of the strengths of qualitative research is the recognition that data must always be understood in relation to the context of their production. 1 The analytical approach taken should be described in detail and theoretically justified in light of the research question. If the analysis was repeated by more than 1 researcher to ensure reliability or trustworthiness, this should be stated and methods of resolving any disagreements clearly described. Some researchers ask participants to check the data. If this was done, it should be fully discussed in the paper.

An adequate account of how the findings were produced should be included A description of how the themes and concepts were derived from the data also should be included. Was an inductive or deductive process used? The analysis should not be limited to just those issues that the researcher thinks are important, anticipated themes, but also consider issues that participants raised, ie, emergent themes. Qualitative researchers must be open regarding the data analysis and provide evidence of their thinking, for example, were alternative explanations for the data considered and dismissed, and if so, why were they dismissed? It also is important to present outlying or negative/deviant cases that did not fit with the central interpretation.

The interpretation should usually be grounded in interviewees or respondents' contributions and may be semi-quantified, if this is possible or appropriate, for example, “Half of the respondents said …” “The majority said …” “Three said…” Readers should be presented with data that enable them to “see what the researcher is talking about.” 1 Sufficient data should be presented to allow the reader to clearly see the relationship between the data and the interpretation of the data. Qualitative data conventionally are presented by using illustrative quotes. Quotes are “raw data” and should be compiled and analyzed, not just listed. There should be an explanation of how the quotes were chosen and how they are labeled. For example, have pseudonyms been given to each respondent or are the respondents identified using codes, and if so, how? It is important for the reader to be able to see that a range of participants have contributed to the data and that not all the quotes are drawn from 1 or 2 individuals. There is a tendency for authors to overuse quotes and for papers to be dominated by a series of long quotes with little analysis or discussion. This should be avoided.

Participants do not always state the truth and may say what they think the interviewer wishes to hear. A good qualitative researcher should not only examine what people say but also consider how they structured their responses and how they talked about the subject being discussed, for example, the person's emotions, tone, nonverbal communication, etc. If the research was triangulated with other qualitative or quantitative data, this should be discussed.

Discussion.

The findings should be presented in the context of any similar previous research and or theories. A discussion of the existing literature and how this present research contributes to the area should be included. A consideration must also be made about how transferrable the research would be to other settings. Any particular strengths and limitations of the research also should be discussed. It is common practice to include some discussion within the results section of qualitative research and follow with a concluding discussion.

The author also should reflect on their own influence on the data, including a consideration of how the researcher(s) may have introduced bias to the results. The researcher should critically examine their own influence on the design and development of the research, as well as on data collection and interpretation of the data, eg, were they an experienced teacher who researched teaching methods? If so, they should discuss how this might have influenced their interpretation of the results.

Conclusion.

The conclusion should summarize the main findings from the study and emphasize what the study adds to knowledge in the area being studied. Mays and Pope suggest the researcher ask the following 3 questions to determine whether the conclusions of a qualitative study are valid 12 : How well does this analysis explain why people behave in the way they do? How comprehensible would this explanation be to a thoughtful participant in the setting? How well does the explanation cohere with what we already know?

CHECKLIST FOR QUALITATIVE PAPERS

This paper establishes criteria for judging the quality of qualitative research. It provides guidance for authors and reviewers to prepare and review qualitative research papers for the American Journal of Pharmaceutical Education . A checklist is provided in Appendix 1 to assist both authors and reviewers of qualitative data.

ACKNOWLEDGEMENTS

Thank you to the 3 reviewers whose ideas helped me to shape this paper.

Appendix 1. Checklist for authors and reviewers of qualitative research.

Introduction

• □ Research question is clearly stated.
• □ Research question is justified and related to the existing knowledge base (empirical research, theory, policy).
• □ Any specific research or educational terminology used later in manuscript is defined.
• □ The process by which ethical and or research/institutional governance approval was obtained is described and cited.
• □ Reason for choosing particular research method is stated.
• □ Criteria for selecting study participants are explained and justified.
• □ Recruitment methods are explicitly stated.
• □ Details of who chose not to participate and why are given.
• □ Study sample and research setting used are described.
• □ Method for gaining informed consent from the participants is described.
• □ Maintenance/Preservation of subject anonymity and confidentiality is described.
• □ Method of recording data (eg, audio or video recording) and procedures for transcribing data are described.
• □ Methods are outlined and examples given (eg, interview guide).
• □ Decision to stop data collection is described and justified.
• □ Data analysis and verification are described, including by whom they were performed.
• □ Methods for identifying/extrapolating themes and concepts from the data are discussed.
• □ Sufficient data are presented to allow a reader to assess whether or not the interpretation is supported by the data.
• □ Outlying or negative/deviant cases that do not fit with the central interpretation are presented.
• □ Transferability of research findings to other settings is discussed.
• □ Findings are presented in the context of any similar previous research and social theories.
• □ Discussion often is incorporated into the results in qualitative papers.
• □ A discussion of the existing literature and how this present research contributes to the area is included.
• □ Any particular strengths and limitations of the research are discussed.
• □ Reflection of the influence of the researcher(s) on the data, including a consideration of how the researcher(s) may have introduced bias to the results is included.

Conclusions

• □ The conclusion states the main finings of the study and emphasizes what the study adds to knowledge in the subject area.

• Open access
• Published: 08 August 2024

Quality of life and living with Parkinson’s disease: a qualitative exploration within an Irish context

• Irene Cassidy 1 ,
• Owen Doody 1 ,
• Margaret Richardson 2 &
• Pauline Meskell 1  

BMC Neurology volume  24 , Article number:  275 ( 2024 ) Cite this article

13 Accesses

Metrics details

Parkinson’s disease is incurable, and the rate of progression varies meaning that people face a long future with an unpredictable condition that can significantly influence their quality of life. To date, much of the international research has focused on measuring and describing quality of life in Parkinson’s from a quantitative perspective. Given its multidimensional nature, the present study aims to explore the concept using a qualitative approach so factors influencing self-reported quality of life can be understood in greater depth.

Using a qualitative descriptive approach, people with Parkinson’s disease who were survey participants in the first phase of a mixed methods study exploring factors influencing health-related quality of life were invited to participate in semi-structured interviews. Eighteen participants with high ( n  = 6), average ( n  = 6), and low ( n  = 6) health-related quality of life (PDQ-39 SI scores) were purposively invited to participate in this study. Audio recordings were transcribed and thematically analysed using Braun and Clarke’s steps (familiarisation, generating initial codes, searching for themes, reviewing, defining, naming themes, and producing the report).

Thematic analysis revealed four overarching themes; ‘Living an interrupted life,’ ‘Striving for ‘I’ in independence,’ ‘Unravelling identities, roles, and relationships’ and ‘Reconfiguring life’. These themes illuminated participants’ experiences of living with Parkinson’s disease and what influenced their overall quality of life.

Conclusions

These findings add to the international literature by helping to achieve a deeper understanding of what it means to live with Parkinson’s disease and how it influences quality of life. Participants experienced a range of fluctuating, and interconnected motor and non-motor symptoms. This finding draws attention to the impact of the often-unpredictable nature of the condition on the physical, functional, psychological, social, and spiritual dimensions of life. Quality of life was positively influenced by perceptions of independence and negative feelings of dependence. Being independent was associated with freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, or fearful. Having a positive outlook, using problem-focused strategies, and participating in hobbies, holidays, work, and involvement in local community committees were perceived positively across interviews as accentuating social dimensions of life. Resourcing self-management strategies, advanced nursing roles, and developing personalised models of community support may assist healthcare professionals in meeting the unique needs of people with Parkinson’s disease thereby supporting quality of life.

Peer Review reports

Globally, Parkinson’s disease exemplifies a rapidly growing multifactorial neurodegenerative condition [ 1 , 2 ] that is currently incurable with varying rates of progression [ 3 , 4 ]. Ageing remains one of the most significant risk factors for developing Parkinson’s [ 5 ]. These features mean that individuals can face a long future with an unpredictable condition that may significantly influence their quality of life [ 4 , 6 ]. Research has highlighted challenges to maintaining personal equilibrium and self-concept and the need to preserve a stable identity, feel in control, and have a positive mindset [ 7 , 8 ]. Additionally, self-caring challenges and fear of becoming disabled have also been described [ 9 ]. Augmenting quality of life for older people with Parkinson’s disease requires multifaceted and multidisciplinary care input [ 10 ] that can provide symptom relief, care, and rehabilitation that meets the health care needs of the person, their family, and society [ 11 , 12 ]. Hence, consideration of older adults’ experiences of living with this condition and evaluating what influences their quality of life is significant for appraisal, service improvement, and provision of evidence-based health and social care resources [ 13 , 14 ].

To date, much of the international research has focused on measuring and describing quality of life in Parkinson’s disease from a quantitative perspective [ 15 , 16 ]. Qualitative studies have been explored to a lesser extent. Older findings have shown that biopsychosocial factors, sense of autonomy, adaptation, communication, and social integration [ 17 ] along with interrelated factors connected with their health, interpersonal relationships, personalised care, communication, and society influence quality of life [ 18 ]. Investigating people’s experiences in Ireland can add significantly to the current evidence, provide greater clarity to the meaning of quality of life, and offer a fuller and richer understanding of the impact of this condition on people’s lives. This is paramount to inform evidence, healthcare policy, and practice so that healthcare professionals can respond effectively to influences shaping individuals’ perceptions, goals, expectations, standards, and concerns.

This paper presents a qualitative study exploring the experiences of men and women in Ireland living with Parkinson’s disease and what influenced their quality of life. Using a qualitative descriptive approach, [ 19 ] survey participants in the first phase of a mixed methods study that explored factors influencing health-related quality of life [ 20 ] were invited to participate in a semi-structured interview. The study is reported in line with the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines [ 21 ] (Additional file 1 ).

Sampling and recruitment/ participants and setting

A stratified purposive sampling approach was used to invite people with Parkinson’s disease to describe their experiences of living with this condition and to explore in greater depth factors associated with high, average, and low self-reported health-related quality of life. To prepare for this approach, the PDQ-39 single index (SI) scores from all participants in the survey phase [ 20 ] were ordered from 0 to 72.76 and then divided into three groups. The initial fifty-eight scores ranged from 0 to 19.38 and represented people with higher health-related quality of life. The median score in this participant group was 12.81. The next fifty-seven PDQ-39 SI scores ranged from 19.69 to 37.29 and represented people with average health-related quality of life. The median score in this group was 27.42. The final fifty-eight of the 173 scores ranged from 37.4 to 72.76 and represented people with lower health-related quality of life. The median score in this participant group was 48.54.

In total, n  = 150 survey respondents completed and returned an ‘expression of interest’ on their survey to participate in a follow-up semi-structured interview. These participants’ scores were cross-checked against the median scores for people with high, average, and low self-reported health-related quality of life. A sample of survey participants ( n  = 18) who had completed an expression of interest to participate in a semi-structured interview and whose PDQ- SI scores centred on or near the median scores in each of the three groups were invited to participate in this study (high n  = 6, average n  = 6, and low n  = 6 health-related quality of life). Equal numbers of men and women were invited to augment representativeness. There were no refusals to participate and no withdrawals from the study. Tailoring the sampling strategy offered a distinctive approach to reveal multifaceted, and multifactorial influences on quality of life for men and women with Parkinson’s disease who had high, average, or low self-reported health-related quality of life.

Recruitment ceased at 18 participants (Additional file 2 ) when data sufficiency was reached. Participants chose their interview location; participants’ homes ( n  = 11), nursing home ( n  = 1), hotels ( n  = 2), and university venues ( n  = 4). Data was collected using one-to-one, face-to-face semi-structured interviews except on one occasion where a primary carer was present. They contributed to the interview by supporting the participant to communicate their experiences of e.g. altered balance, falls, and medication dosages along with offering their perspective on the value of the nurse specialist and the Parkinson’s support group. The interview guide was developed by the research team in collaboration with three Parkinson’s disease/Movement disorder nurse specialists to support content validity (Additional file 3 ). Following the pilot interview, reflections identified the need to include an additional question in the semi-structured interview guide related to the influence of work/roles and participation on quality of life.

Data was collected within a PhD study. The researcher (IC) was a nursing educator with a specific interest in Parkinson’s care and was experienced in qualitative interviewing. Each participant was interviewed at one point in time and the interviews varied from thirty to fifty minutes but lasted on average forty-five minutes. Interviews were audiorecorded and typically opened with broad questions to ease participants into conversation e.g. ‘Tell me your experiences of living with Parkinson’s’ and ‘Can you share with me what you feel influences your quality of life?’. The researcher’s role also entailed listening, responding, and introducing interview guide questions, prompts and probes to allow participants to expand on their experiences (Additional file 3 ). Following each interview, field notes and reflections on participant data were recorded (IC) as introspective processes of becoming aware. Reflections captured the ‘context of reflection,’ ‘trigger for reflexivity,’ ‘researcher thinking,’ and ‘outcomes of reflexivity’ [ 22 ].

Interviews were analysed inductively using thematic analysis [ 23 ]. Analysis was supported using NVivo 11.0. Interview recordings were transcribed verbatim, initially pseudonymised, and verified for accuracy by reading transcriptions and listening to recordings concurrently. Member checking was achieved by requesting a selection of participants ( n  = 6) to check their interview transcripts for accuracy, interpretation, and completeness. One participant requested some minor changes to reflect changed life circumstances. Following member checking all transcripts were then anonymised. The principal investigator (IC) undertook coding of each interview transcript. Codes were generated from each interview transcript while simultaneously listening to each recording. Codes were then cross-checked and reviewed to ensure that coding for each interview was inclusive, thorough, and systematic. The final codes ( n  = 304) were stored under an open coding folder in NVivo. Data collated for each code were reviewed by the research team to identify similarities and overlap between codes. Where researcher interpretations varied, discussion and reflection enhanced insight into the meaning behind data until subthemes and themes were refined and crafted by the research team (IC, PM, OD). Consistent with an interpretive lens that recognises researcher subjectivity in data interpretation, thirteen subthemes were developed which amalgamated to form four overarching themes (Fig.  1 Additional file 4 ).

Ethical approval was granted by the University Hospital Research Ethics Committee. There was no formal caring relationship between participants and the researcher (IC) who recruited, collected, and analysed participant data before or after the study. Participants were informed of the nature of the study, the researcher’s responsibilities, and their right to decline to partake in the study or withdraw at any time without risk of incurring penalties or prejudicial treatment. Participants were also given the contact details of a nurse specialist if they felt they needed additional support. The right to full disclosure ensured that individuals received information outlining the type of study, and likely risks and benefits; all participants provided their written informed consent.

Participant demographics

An equal number of men ( n  = 9) and women ( n  = 9) participated in the study. The age and years since diagnosis categories for all eighteen participants and each of the health-related quality of life groups (high, average, low) are included in Additional file 2 . Depression symptomology data revealed that all those with high health-related quality of life reported normal/no depression symptomology while those with low health-related quality of life reported normal/no depression symptomology ( n  = 1), mild ( n  = 2), moderate ( n  = 2), and severe depression symptoms ( n  = 1). (Additional file 2 ).

Overarching themes

Through thematic analysis, thirteen subthemes were identified, and these were hierarchically connected to four overarching themes namely, ‘Living an interrupted life,’ ‘Unravelling identities, roles and relationships,’ ‘Striving for ‘I’ in independence,’ and ‘Reconfiguring life’ (Fig.  1 ).

Four overarching themes with related candidate themes

Living an interrupted life

‘Living an interrupted life’ represented experiences from all eighteen participants that life with Parkinson’s disease was punctuated with interruptions, which influenced quality of life daily. This theme contained three subthemes, ‘Visible intrusions’, ‘Hidden invasions’, and ‘Unexpected interruptions’.

For participants in the high health-related quality of life group, motor fluctuations typically included slowed movement, joint stiffness, or feeling ‘stumbly.’ Participants with average health-related quality of life reported additional fluctuations including freezing of gait and altered balance. For those in the low health-related quality of life group, motor fluctuations also included freezing, difficulty standing/walking that often resulted in falls.

Freezing episodes were described as “just a weird sensation” or a “shutdown” (P16), where “…the mind, everything isn’t coordinating together” (P17), or being “stuck to the ground” (P14). For some, unpredictability resulted in powerlessness, not feeling in control of self during ‘freezing’ interruptions, or embarrassment, particularly in social situations where “… you feel everyone is looking at you” (P11). Interruptions to life in the guise of fluctuations in functioning or “the way of Parkinson’s” (P1), impacted ability to plan, reducing control and perceived quality of life.

The impact of fluctuations on functioning was perceived as less intense for participants with higher self-reported health-related quality of life such as “there are days when I drop things and I’m frustrated; I can’t open a button or something silly like that” (P2). Whereas for a person with lower health-related quality of life, their experience of a freezing episode resulted in symptoms being misinterpreted as “I’m not drunk but I’ve a medical disorder” (P11). Fluctuations meant that individuals could transform between different states of functioning throughout the day. Metaphorically it was compared with “a light switch you turn on and off. It’s scary” (P13). For several participants, the morning, or times when medication was wearing off were the worst part of their day.

Interruptions to conversation or dialogue influenced engagement with others “Interacting with other people my voice goes lower” (P4). As voice becomes affected, people can withdraw from group conversation as they may feel they are not articulating themselves clearly. This may create a sense of isolation leading to situations where,

“I don’t like going out in public anymore because my speech is gone very bad” (P16).

Participants reported that sleep and tiredness were problematic and acted as considerable disruptions to life. However, interruption to sleep often stemmed from other hidden problems such as pain and restless legs, highlighting the interconnectedness of non-motor symptoms; one symptom triggering another symptom resulting in a ‘chain’ or ‘pain’ reaction. Invariably these resulted in unpredictable disturbances to what should be otherwise routine activities, stopping the person in their tracks and disrupting life.

Only one participant relayed the impact of Parkinson’s disease on sexuality. This individual indicated that their outgoing personality assisted them in availing of clinic appointments to divulge sexual issues. However, they felt that religious influences in Ireland, embarrassment, fear of being labelled a “dirty old man” or general hesitancy in discussing sexual issues, still joined forces to cause many people to suffer “in the darkness” (P7). Non-motor symptoms were described as ‘hugely intrusive,’ and ‘tortuous’ (P1). Rather than being a long-term condition affecting bodily movement, the condition “…affects everything in your body” (P7), and “I think it makes everyone depressed” (P13). The significance of hidden symptoms on spiritual dimensions of life was also emphasised, “I suppose they’re not life-threatening but they’re spirit-threatening” (P1).

Striving for ‘I’ in independence

This theme represented the person (as in ‘I’) pursuing or seeking an identity encapsulating independence. Four subthemes contributed to this theme, ‘Cherishing independence’, ‘Balancing medication effects/side-effects’, ‘In the system’, and ‘Being informed’.

Good quality of life related to “being independent” (P13), or “To me, quality of life starts and finishes there, [independence]” (P11). Being independent entailed freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, fearful of feeling like a burden to family. Conversely, fading independence conveyed a complex array of losses, including social freedom and independent travel “Oh, I can walk around the house I can, but I wouldn’t be able to go to town now on my own” (P12). Another participant with low health-related quality of life stated,

“My own independence is gone…Like, what is independence – to be able to go when you want to, to do what you want to do. So, if you can’t do that … I don’t like to be dependent” (P18).

Medication was pivotal to comfort, and retaining a sense of self, “they keep the shaking and the whole lot to a minimum, at least you can fit in as a normal person…” (P9). Concerns around medication, related not just to side effects, but to taking multiple daily tablets “…sometimes the cure is worse than the disease” (P1), or “Oh gosh I’m taking too many tablets” (P15). Hence, preserving independence demanded organisation, responsibility, and diligence to follow up on frequent dose schedules.

Being in the health system and having a patient identity brings an inevitable need to interact with a myriad of healthcare professionals such as neurologists, consultant geriatricians, and allied therapists (physiotherapists, speech and language therapists, occupational therapists, nurse specialists, and general practitioners). Receiving encouraging comments and linking with practitioners who could refer to related therapies was valued for helping participants settle into life with Parkinson’s disease.

“I’ve got great confidence in the neurologist” (P2). “The physio and OT, they’ll listen to you, and they’ll advise you on whatever” (P15).

Participants seemed to appreciate emotional support provided by Parkinson’s nurse specialists, including additional support during times of hospitalisation, “I called on [nurse specialist] and she came and helped me and gave me some moral support, that was great” (P10). Overall, participants perceived the nurse specialist as knowledgeable and ‘tuned into’ (P6) the whole person.

The importance of community health services was highlighted to ‘keep [people] out of nursing homes and to keep them at home’ (P18). While structures were identified for personal health care needs, deficiencies in home-based social care supports were highlighted as a barrier to supporting independence and citizenship within local communities. One participant suggested that it would be of greater benefit if the form of support from community services reflected individual needs, rather than a one size fits all approach.

“I didn’t see any point in somebody coming in and helping me shower when I was able to do it myself. By doing the shower for me, it was making me less independent. What I was looking for was somebody to go with me, to do the shopping, but they don’t do that” (P17).

Unravelling identities, roles, and relationships

Living with Parkinson’s disease was a life-changing journey that involved unravelling many identities, roles, and relationships that influenced quality of life and was formed by the subthemes, ‘Unravelling identities’, ‘Viewpoints and representations of Parkinson’s’, ‘Occupiers and outliers’ and ‘Reflections on roles, relationships’.

For people with good health-related quality of life or those in earlier stages, being able to dissociate from the condition to some degree, was facilitated by having minimal outward features. For others, ignoring they had it was a means of adapting and coping with the diagnosis, which facilitated escape and detachment. Having a ‘label’ was viewed positively by one participant.

“It was good to get a name for it, it has an identity, and you just say you have Parkinson’s and that’s it” (P8).

Nevertheless, the condition contributed to only one aspect of identity; people were more than patients. For another participant, ‘Parky’ (P7) was a named identity or force separate from the person’s ‘true’ identity, who invaded their life, controlled them, and caused havoc “You’d swear there was somebody inside in your head pulling the switches” (P7). Contrastingly, “when you feel good, Parkinson’s is over here you don’t need it, it isn’t controlling you” (P16).

One participant with high health-related quality of life was clear that the condition was ‘not as bad’ as what the label portrayed (P2). This participant aspired to remain ‘ordinary’ and retain normality. However, another participant with low health-related quality of life recounted occasions where interfacing with others caused feelings of discomfort and categorisation, “you find people are staring at you when you go shopping” (P17).

Participants seemed to affiliate with and occupy ‘groups’ they self-categorised themselves as belonging to. Interestingly, participants i.e., P2 and P3 who had better health-related quality of life seemed to embrace (non-Parkinson’s) groups. Participants identified with Parkinson’s-specific groups (e.g., local support groups and specific therapy groups) and membership if they offered a source of needed knowledge, expertise, or network opportunities. ‘Mental categorisation’ provided a basis for defining if a group was relevant. Categorisation was primarily influenced by appearances and perceived severity of existing group members’ health as in, “there are different grades of it you’d notice that inside at the meetings” (P15). Hence, some participants whose stage was milder remained ‘outliers’ from support groups and spoke in terms of differentiating self-identities from existing group members.

“I probably don’t think I’m old enough or frail enough to join” (P2).

Participants with different health-related quality of life scores (high, average, and low) used adjectives like ‘scary’ (P10) when they witnessed another person in a more advanced stage. This event created fears of what their future and future identities might hold.

“If I saw somebody with advanced Parkinson’s disease, I would avoid that …, that’s my coping skill” (P6).

Participants including those with poorer health-related quality of life discussed loss of previous functioning, roles, and increased social isolation. Underlying fears about deteriorating health grounded perceived quality of life within a physical health agenda.

“Parkinson’s itself is creeping up on me. I’ve fallen down the stairs. I don’t like going out in public anymore because my speech is gone bad” (P16).

Changing roles from carer to being cared for and feeling like “… I’m a burden” (P15), along with changing partner roles were perceived as affecting life quality. Moreover, reduced activity or independence to travel outside the home creates a negative spiral where people become self-conscious, retreat further into themselves, become uneasy in social situations, or become “…a bit slow on …linking in” (P9). Isolation creates uneasiness, presenting another vicious circle where nervousness results in further isolation from engagement in social situations because,

“… if we’re in this environment [home] 7 days a week, 24 hours a day and not meeting [others] … you do go further and further back [into yourself]” (P18).

Reconfiguring life

Reconfiguring life was presented as a non-linear process of confronting, adjusting, and reshaping life with Parkinson’s. This theme contained two subthemes, ‘Tackling Parkinson’s’ and ‘Making Connections.’

Tackling Parkinson’s meant adopting an outlook imbued with, “positivity and good mental attitude” (P2). Positivity was an active rather than passive process stemming from conscious efforts to put the bright side out, “I think I have come to terms with it. But it was all adopting a positive attitude to it” (P8). Taking the positives from life, rationalising that there were more serious conditions, and recognising abilities rather than debilities, “I have a good quality of life outside of it [Parkinson’s disease]” was also highlighted (P7). Remarkably, one participant (P14) who recorded only average health-related quality of life scores felt they had good quality of life highlighting inadequacies in health-related tools in evaluating global quality of life.

Confronting Parkinson’s head-on, meant finding a purpose, acknowledging restrictions imposed on life, and working around these to move forward, “since I have faced up to it and turned my life around and said I have Parkinson’s, that’s just it. Parkinson’s on board!” (P8).

Adjusting to life changes extended to accomplishing new ventures, challenging oneself, and moving forward. It also meant pursuing passions or pastimes, beginning new ventures, continuing previous interests, and blending old and new identities. Participants’ accounts of hobbies and holidays demonstrated enthusiasm for life and learning. While this was described across groups, it was more frequently cited by participants diagnosed less than 6 years, with normal or mild depression symptomology and good or average health-related quality of life.

“I’m with the drama group… cycling… you make lots of friends and I suppose it’s the camaraderie of it” (P3).

However, pursuing interests wasn’t easy for all participants “because you wouldn’t have the strength to do anything” (P17), may feel hesitant to link in with others (P9) or may experience diminishing confidence.

“… one of the things people lose is confidence… you go back into yourself … you do feel you’ve lost your value” (P18).

Participants shared innovative and meaningful rituals they used to manage everyday life, which incorporated personal ways of knowing. These ranged from shaking holy water on their bed to prevent nightmares (P17), to doing “my five times tables in my head…” to divert attention from a shaking hand (P7) or getting up “…an hour earlier” (P13) to reduce stress. Adapting and reconfiguring wasn’t easy for all participants, particularly those with poorer health-related quality of life, “I can’t go up the stairs and that kills me” (P15). Another participant who was “very house-proud” (P15), found it extremely difficult to cope with not being able to participate in housework. Being positive and wishing to get on with life wasn’t a stable attribute; it was sometimes hard to relinquish control, as it’s hard to be balanced all the time (P1).

Tackling Parkinson’s required mental strength and resilience to take on a challenge and battle to win out and beat ‘Parky’ (P7), using problem-solving approaches in the face of adversity. Participant emphasis on words ‘have to’ implied that rather than mental strength being optional or occasionally added-on, it was a daily requirement reinforcing the importance of mental health and well-being to reconfigure and adapt. Being in control and not letting the condition take over personhood was imperative to good quality of life, summed up by,

“I might have Parkinson’s, but it doesn’t have me” (P11).

In response to ‘What you think improves your quality of life,’ one participant answered, “Well, I think participating” (P8). Building group involvement around specific activities can have beneficial spin-off effects, including augmenting social dimensions of life. What was particularly striking was participant involvement in community life, for example, active engagement in reclaiming local history and community committees, with the sentiment being to “Get out there and mix with the people” (P7). One participant summed up the importance of making connections, “It’s the whole social aspect of it…, chatting away to people, it’s brilliant” (P2). Having purpose meant that participants didn’t define their lives solely through this neurological condition but through engagement in leisure activities or work as it is “very important for people to join things and have their own life” (P2).

Barriers to connecting were evident and wide-ranging, including transportation issues, psychological impediments, physical effects of Parkinson’s like freezing, altered gait, and difficulty doing activities. These barriers reflect the complex range of factors, including physical, functional, psychological, environmental, and social influencing quality of life.

“When I’m among crowds …I have to keep an eye on myself just so that I wouldn’t be pushed over” (P5).

A key finding from this study was the fluctuating, unpredictable, and intrusive nature of Parkinson’s disease and how it influenced quality of life, particularly for those with lower health-related quality of life. Previous evidence [ 24 ] has highlighted how the fluctuating, unpredictable nature of the condition leads to activity curtailment adversely impacting people’s lived experience. Participants reported that freezing episodes affected mobility, movement predictability, and ability to plan. Internationally, the occurrence of freezing of gait is recognised as intrusive, impacting life quality [ 25 , 26 , 27 , 28 ]. With freezing, falls or psychosocial effects, such as fear, anxiety, embarrassment, vulnerability, and inability to undertake social roles may impact daily living [ 29 ]. This finding has clinical relevance for nurses and healthcare professionals and underscores the importance of undertaking individualised assessments and managing interconnections between freezing of gait and other symptoms [ 30 ] to reduce their intrusiveness on perceived quality of life.

In this study, the intrusiveness of ‘hidden’ non-motor symptoms was discussed not only by their physical threat or distress to daily living but also by their psychological, social, and spiritual impact. The broader research reinforces findings from this study that these symptoms can also extend beyond mere health-related effects and encroach into broader realms of quality of life [ 31 , 32 ] highlighting for health care professionals and researchers the inadequacies of health-related tools in evaluating the everyday impact of Parkinson’s disease [ 20 ]. Encouraging people with Parkinson’s to complete a straightforward tool like the NMSQuest [ 33 , 34 ], a patient diary [ 35 ], consultation aid [ 36 ], or home-based self-management interventions such as smartphone-based text messaging and information [ 37 ] can be effective methods of detecting problems influencing quality of life and emphasise the importance of health care professionals empowering people with Parkinson’s to be active participants in their care. For multidisciplinary teams, fostering choice about consultations such as who attends, what is discussed [ 38 , 39 ], and how they are facilitated can encourage people to report sensitive non-motor symptoms. Hence, independent factors influencing quality of life can be revealed, and comprehensive multidisciplinary interventions incorporating holistic care can be devised [ 40 , 41 , 42 , 43 , 44 ].

All participants with poorer health-related quality of life discussed loss of previous functioning, roles, and increased social isolation. This resonates with the wider literature where fear of becoming disabled is a primary concern [ 9 ]. Access to exercise-based rehabilitative interventions and multidisciplinary team input (nursing, physiotherapy, occupational therapy, speech, and language therapy, GP, and neurologist) were recognised as important to moderate the impact of the condition, maintain function, support independence, well-being, and quality of life. Within this, nurse specialists were valued for their accessibility, holistic perspectives, and generalised guidance. In the wider literature, Wright [ 45 ] asserts that nurse specialists play a crucial role in evaluating patients throughout the disease trajectory, from diagnosis to the complex stages of palliative and end-of-life care. Their remit incorporates care of patients with complex therapies, continuity of care, specialised clinics, education, counselling, advocacy, and multidisciplinary collaboration [ 46 , 47 , 48 , 49 ]. However, recent findings from a national survey on experiences of health service access and use in Ireland found that only 20.7% ( n  = 290) of participants reported having access to a Parkinson’s nurse specialist [ 50 ]. Indeed, access to specialised nursing and continuing contact with a nurse specialist is a key recommendation [ 49 ]. Given the drive to use mechanisms and processes to deliver safe and effective healthcare at the lowest level of complexity [ 51 ], it is imperative that health policy and service planning, prioritise the resourcing of specialist and advanced community nursing roles to enhance the health and social care needs of people with Parkinson’s disease within their community.

In this study, qualitative data suggested that increasing dependency or care needs often necessitated more formal community care support. Living at home is the preferred choice for many older people with research and policy documents in Ireland supporting the importance of community or home-based care [ 52 , 53 ]. Bolenius et al. [ 54 ] stated that older adults living at home with support from home care services have better quality of life if their care and service needs are met. For some participants in this study, formal supports like home help, which typically involve ‘doing for’ the person, were perceived as jeopardising independence; devoted help being disabling rather than enabling. Von Heideken-Wågert et al. [ 55 ] also raised this point in that as far as home help was considered a ‘helping hand,’ it was also potentially inhibiting. Barken [ 56 ] also highlighted that valuing the involvement of older people with disabilities in their care muddies dichotomous understandings of independence as capacity to do things for oneself and dependence as the need for help. According to Tracy and Robles [ 57 ], altercasting an individual as helpless or ill often takes the way of others providing “excessive” help, which may impinge on an independent identity. Thus, like Wilde and Glendinning’s [ 58 ] findings on home care re-ablement services, understanding individuals’ and carers’ priorities for recovery and daily living is fundamental to successfully regaining skills, confidence, and independence for people with Parkinson’s disease.

In Ireland, the long-term vision for health and social care and the direction of health policy recommends increasing community homecare provision [ 51 ]. Browne [ 52 ] proposed that for older people in Ireland, the ‘money follows the person’ principle needs to be extended to all services and funding provided on an individualised basis so interventions can be personalised to individuals’ current and changing needs. From a health policy perspective, this requires a commitment to change focus, from a biomedical to a needs-based approach to understand the impact of living with Parkinson’s and enable more person-centred care and outcomes [ 59 ].

In this study, participating in hobbies, holidays, and involvement in local community committees was perceived positively across interviews as accentuating social dimensions of life. Similarly, enthusiasm and fulfilment from active engagement in community committees and being part of interest ‘groups’ were highlighted. Qualitative data showed that participants with good or average health-related-quality of life, no or mild depression symptomology, and those diagnosed for shorter timeframes (i.e., 1–6 years) more frequently described pursuing activities. Hence, the importance of anticipating the impact of perceived health-related quality of life, depression symptomology, and length of time diagnosed on activity engagement and overall quality of life. Even if physical health becomes poor, evidence suggests that quality of life can often remain high if individuals find value and enjoyment in other dimensions of life [ 13 ]. For healthcare professionals, this raises the challenge of how best to promote activity and community engagement in people with Parkinson’s disease who have been living with the condition for prolonged timeframes while also experiencing declining health.

Language is a powerful tool to influence how society and culture construct disabilities [ 60 ]. Findings from this study also illuminated determination and commitment to tackle the effects of Parkinson’s disease and the importance of not letting this get in the way of everyday living. In this study, one participant (good health-related quality of life), used creative and innovative emotion-confronting skills and determination by personifying the condition as ‘Parky,’ an intruder to be battled. Personification can change an event or situation from an external hindrance into an internal sense of purpose and meaning [ 61 ]. Having a sense of focus and fortitude may help cultivate a sense of mastery or control for living with the condition [ 62 ]. What was particularly interesting was the can-do attitude, which from a societal agenda, underlines the importance of health-care professionals in partnership with people living with Parkinson’s disease challenging discourse to draw more considerable attention to abilities rather than disabilities.

The study did not primarily seek to compare perceived quality of life between people with differing health-related quality of life scores. Nonetheless, inviting a stratified sample of men and women with high, average, and low health-related quality of life [ 20 ] offered a distinctive and representative approach to reveal multifaceted, and multifactorial influences on quality of life for men and women with Parkinson’s disease. It is recommended that future research focuses on developing an instrument that embraces wider dimensions of life quality and the everyday impact of Parkinson’s disease to overcome inadequacies in health-related quality of life instruments [ 20 ]. Empowering individuals to self-monitor for the presence and impact of non-motor symptoms along with promoting choice on follow-up consultations may assist with reporting and follow-up of these symptoms. A ‘personalised’ community support model that addresses not just physical dimensions of health, but also social dimensions is recommended to promote independence. Additionally, resourcing advanced nursing roles may assist healthcare teams in meeting the needs of people with Parkinson’s disease thereby promoting independence and supporting overall quality of life.

This research was conducted in one area of Ireland; hence participants’ experiences are specific to an Irish context and a limitation of this study is that the findings may not reflect the entire population of people living with Parkinson’s disease. Furthermore, including data on cognitive status, stage, and severity of Parkinson’s may have shaped the research findings by furthering insight and analysis of participant perspectives.

This study explored the experiences of people with Parkinson’s with high, average, and low health-related quality of life around what it means to live with this condition and how it influenced their perceived quality of life. While all participants experienced fluctuating and unpredictable symptoms, participants with lower health-related quality of life reported more concerns relating to mobility and non-motor symptoms including anxiety and depression. Encouraging self-monitoring may empower individuals to increase help-seeking intentions thereby supporting self-management and independence. Quality of life was positively influenced by perceptions of independence and negatively by feelings of dependence. Being independent was associated with freedom to plan, autonomy of choice, and freedom from feeling stressed, strained, or fearful. Funding self-management strategies, advanced nursing roles, and personalised community care models, may assist healthcare professionals in meeting the goals, expectations, standards, and concerns of people with Parkinson’s disease.

Having a positive outlook, using problem-focused strategies, and participating in hobbies, holidays, work, and involvement in local community committees were perceived positively across interviews as accentuating social dimensions of quality of life. Consequently, healthcare professionals should capture opportunities to support individuals to engage with valued groups and activities, thereby promoting community engagement and contributing to life quality.

Data availability

Availability of Data: The data that support the findings of this study is not openly available due to reasons of sensitivity but may be available from the corresponding author upon reasonable request. Data is in controlled access data storage at the University of Limerick.

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Acknowledgements

Acknowledgements: We acknowledge and thank the University of Limerick for supporting this study through an internal early researcher seed grant. We also acknowledge Professor Catriona Kennedy, Professor Fiona Murphy, Professor Susan Coote, Dr. Peter Boers, and Mary Pat Butler for their contributions to, the initial stages of this research design and to a University of Limerick early researcher seed funding initiative. Dr Jean Saunders Consultant Statistician. Finally, we sincerely thank the eighteen participants for sharing their time, experiences, and insights to understand further what it means to live with Parkinson’s disease and how it influences quality of life.

The University of Limerick, Limerick, Ireland supported this research through an internal university, early career researcher seed funding scheme.

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Irene Cassidy, Owen Doody & Pauline Meskell

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Authors’ contributions: IC designed the study, she conducted the interviews, coded, and analysed the data and she led the writing of the manuscript. OD provided feedback throughout and assisted with the writing of the manuscript. MR provided feedback on the writing of the manuscript. PM contributed to the study design and provided feedback throughout.

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The study was conducted according to the guidelines of the Declaration of Helsinki. The research protocol was approved by the University Hospital Research Ethics Committee, Limerick, Ireland which also provided approval to undertake the research. This approval was based on ethical principles including beneficence/non-maleficence, justice, and autonomy. Consistent with ethical standards, participants were informed of the nature of the study, the researcher’s responsibilities, and their right to decline to partake in the study or withdraw at any time without risk of incurring penalties or prejudicial treatment. All participants provided informed, written consent to participate in the interviews. Research methods were conducted with reference to relevant regulations and study reporting was informed by COREQ guidelines (Additional file 1 ).

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Supplementary Material: Additional File 1: COREQ guidelines

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Cassidy, I., Doody, O., Richardson, M. et al. Quality of life and living with Parkinson’s disease: a qualitative exploration within an Irish context. BMC Neurol 24 , 275 (2024). https://doi.org/10.1186/s12883-024-03769-y

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Received : 06 March 2024

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DOI : https://doi.org/10.1186/s12883-024-03769-y

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