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• Description
• Aims and Scope
• Editorial Board
• Abstracting / Indexing
• Submission Guidelines

Qualitative Health Research provides an international, interdisciplinary forum to enhance health and health care and further the development and understanding of qualitative health research. The journal is an invaluable resource for researchers and academics, administrators and others in the health and social service professions, and graduates, who seek examples of studies in which the authors used qualitative methodologies. Each issue of Qualitative Health Research provides readers with a wealth of information on conceptual, theoretical, methodological, and ethical issues pertaining to qualitative inquiry. A Variety of Perspectives We encourage submissions across all health-related areas and disciplines. Qualitative Health Research understands health in its broadest sense and values contributions from various traditions of qualitative inquiry. As a journal of SAGE Publishing, Qualitative Health Research aspires to disseminate high-quality research and engaged scholarship globally, and we are committed to diversity and inclusion in publishing. We encourage submissions from a diverse range of authors from across all countries and backgrounds. There are no fees payable to submit or publish in Qualitative Health Research .

Original, Timely, and Insightful Scholarship Qualitative Health Research aspires to publish articles addressing significant and contemporary health-related issues. Only manuscripts of sufficient originality and quality that align with the aims and scope of Qualitative Health Research will be reviewed. As part of the submission process authors are required to warrant that they are submitting original work, that they have the rights in the work, that they have obtained, and that can supply all necessary permissions for the reproduction of any copyright works not owned by them, and that they are submitting the work for first publication in the Journal and that it is not being considered for publication elsewhere and has not already been published elsewhere. Please note that Qualitative Health Research does not accept submissions of papers that have been published elsewhere. Sage requires authors to identify preprints upon submission (see https://us.sagepub.com/en-us/nam/preprintsfaq ). This Journal is a member of the Committee on Publication Ethics (COPE) .

This Journal recommends that authors follow the Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals formulated by the International Committee of Medical Journal Editors (ICMJE).

Qualitative Health Research is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.

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Manuscript submission guidelines:

Qualitative Health Research (QHR)  has specific guidelines! While  Sage Publishing has general guidelines , all manuscripts submitted to QHR must follow our specific guidelines (found below). Once you have reviewed these guidelines, please visit QHR ’s  submission site  to upload your manuscript.   Please note that manuscripts not conforming to these guidelines will be returned and/or encounter delays in peer review.   Remember you can log in to the submission site at any time to check on the progress of your manuscript throughout the peer review process.

1. Deciding whether to submit a manuscript to QHR

1.1 Aims & scope

1.2 Article types

2. Review criteria

2.1  Original research studies

2.2 Pearls, Piths, and Provocations

2.3 Common reasons for rejection

3.  Preparing your manuscript

3.1 Title page

3.2 Abstract

3.3 Manuscript

3.4 Tables, Figures, Artwork, and other graphics

3.5 Supplemental material

4. Submitting your manuscript

5. Editorial Policies

5.1 Peer review policy

5.2 Authorship

5.3 Acknowledgments

5.4 Funding

5.5 Declaration of conflicting interests

5.6 Research ethics and participant consent

6. Publishing Policies

6.1 Publication ethics

6.2 Contribtor's publishing agreement

6.3 Open access and author archiving

1. Deciding whether to submit a manuscript to QHR 

QHR  provides an international, interdisciplinary forum to enhance health and health care and further the development and understanding of qualitative health research. The journal is an invaluable resource for researchers and academics, administrators and others in the health and social service professions, and graduates, who seek examples of studies in which the authors used qualitative methodologies.  Each issue of QHR provides readers with a wealth of information on conceptual, theoretical, methodological, and ethical issues pertaining to qualitative inquiry.

Rather than send query letters to the Editor regarding article fit, QHR asks authors to make their own decision regarding the suitability of their manuscript for QHR   by  asking: Does your proposed submission make a meaningful and strong contribution to qualitative health research literature? Is it useful to readers and/or practitioners?

The following manuscript types are considered for publication.

• Original Research Studies : These are fully developed qualitative research studies. This may include mixed method studies in which the major focus/portion of the study is qualitative research. Please read  Maintaining the Integrity of Qualitatively Driven Mixed Methods: Avoiding the “ This Work is Part of a Larger Study”  Syndrome . 
• Pearls, Piths, and Provocations : These manuscripts should foster discussion and debate about significant issues, enhance communication of methodological advances, promote and discuss issues related to the teaching of qualitative approaches in health contexts, and/or encourage the discussion of new and/or provocative ideas. They should also make clear what the manuscript adds to the existing body of knowledge in the area.
• Editorials : These are generally invited articles written by editors/editorial board members associated with QHR.

Please note, QHR does NOT publish pilot studies. We do not normally publish   literature reviews unless they focus on qualitative research studies elaborating methodological issues and developments. Review articles should be submitted to the Pearls, Piths, and Provocations section. They are reviewed according to criteria in 2.2.

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2. Review criteria 

2.1 Original research

Reviewers are asked to consider the following areas and questions when making recommendations about research manuscripts:

• Importance of submission : Does the manuscript make a significant contribution to qualitative health research literature?  Is it original? Relevant? In depth? Insightful? Is it useful to the reader and/or practitioner?
• Methodological considerations : Is the overall study design clearly explained including why this design was an appropriate one? Are the methodology/methods/approaches used in keeping with that design? Are they appropriate given the research question and/or aims? Are they logically articulated? Clarity in design and presentation? Data adequacy and appropriateness? Evidence of rigor?
• Ethical Concerns : Are relevant ethical concerns discussed and acknowledged? Is enough detail given to enable the reader to understand how ethical issues were navigated? Has formal IRB approval (when needed) and consent from participants been obtained?
• Data analysis, findings, discussion : Does the analysis of data reflect depth and coherence? In-depth descriptive but also interpretive dimensions? Creative and insightful analysis? Are results linked to existing literature and theory, as appropriate? Is the contribution of the research clear including its relevance to health disciplines and their practice?
• Manuscript style and format : Is the manuscript organized in a clear and concise manner? Has sufficient attention been paid to word choice, spelling, grammar, and so forth? Did the author adhere to APA guidelines? Do diagrams/illustrations comply with guidelines? Is the overall manuscript aligned with QHR guidelines in relation to formatting?
• Scope:  Does the article fit with QHR ’s publication mandate? Has the author cited the major work in the area, including those published in QHR ? 

The purpose of papers in this section is to raise and discuss issues pertinent to the development and advancement of qualitative research in health-related arenas.  As the name Pearls, Piths, and Provocations suggests, we are looking for manuscripts that make a significant contribution to areas of dialogue, development, experience sharing and debate relevant to the scope of QHR in this section of the journal.  Reviewers are asked to consider the following questions when making recommendations about  articles in the Pearls, Piths, and Provocations section.

• Significance :   Does the paper highlight issues that have the potential to advance, develop, and/or challenge thinking in qualitative health related research?
• Clarity :   Are the arguments clearly presented and well supported? 
• Rigor :   Is there the explicit use of/interaction with methodology and/or theory and/or empirical studies (depending on the focus of the paper) that grounds the work and is coherently carried throughout the arguments and/or analysis in the manuscript? Put another way, is there evidence of a rigorously constructed argument?
• Engagement :   Does the paper have the potential to engage the reader to ‘think differently’ by raising questions, suggesting innovative directions for qualitative health research, and/or stimulating critical reflection?   Are the implications of the paper for the practice of either qualitative research and/or health clear? 
• Quality of the writing :   Is the main argument of the paper clearly articulated and presented with few grammatical or typographical issues? Are terms and concepts key to the scholarship communicated clearly and in sufficient detail? 

QHR  most commonly turns away manuscripts that fall outside the journal’s scope, do not make a novel contribution to the literature, lack substantive and/or interpretative depth, require extensive revisions, and/or do not adequately address ethical issues that are fundamental to qualitative inquiry. Submissions of the supplementary component of mixed methods studies often are rejected as the findings are difficult to interpret without the findings of the primary study. For additional information on this policy, please read  Maintaining the Integrity of Qualitatively Driven Mixed Methods: Avoiding the “ This Work is Part of a Larger Study”  Syndrome . 

3. Preparing your manuscript for submission 

We strongly encourage all authors to review previously published articles in QHR for style prior to submission.

QHR  journal practices include double anonymization. All identifying information MUST be removed completely from the Abstract, Manuscript, Acknowledgements, Tables, and Figure files prior to submission. ONLY the Title Page and Cover Letter may contain identifying information. See  Sage’s general submission guidelines  for additional guidance on making an anonymous submission.

Preferred formats for the text and tables of your manuscript are Word DOC or PDF. The text must be double-spaced throughout with standard 1-inch margins (APA formatting). Text should be standard font (i.e., Times New Roman) 12-point. 

3.1 Title page 

• The title page should be uploaded as a separate document containing the following information: Author names; Affiliations; Author contact information; Contribution list; Acknowledgements; Ethical statement; Funding Statement; Conflict of Interest Statements; and, Grant Number. Please know that the Title Page is NOT included in the materials sent out for Peer Review.
• Ethical statement: An ethical statement must include the following: the full name of the ethical board that approved your study; the approval number given by the ethical board; and, confirmation that all your participants gave informed consent. Authors are also required to state in the methods section whether participants provided informed consent, whether the consent was written or verbal, and how it was obtained and by whom. For example: “Our study was approved by The Mercy Health Research Ethics Committee (approval no. XYZ123). All participants provided written informed consent prior to enrollment in the study.” If your study did not need ethical approval (often manuscripts in the Pearls, Piths, and Provocations may not), we still need a statement that states that your study did not need approval and an explanation as to why. For example: “Ethical Statement: Our study did not require an ethical board approval because it did not directly involve humans or animals.” 

3.2 Abstract and Keywords

• The Abstract should be unstructured, written in narrative form. Maximum of 250 words. This should be on its own page, appearing as the first page of the Main Manuscript file.
• The keywords should be included beneath the abstract on the Main Manuscript file. 
• Length: 8,000 words or less excluding the abstract, list of references, and acknowledgements. Please note that text from Tables and Figures is included in the word count limits. On-line supplementary materials are not included in the word limit. 
• Structure: While many authors will choose to use headings of Background, Methods, Results, and Discussion to organize their manuscript, it is up to authors to choose the most appropriate terms and structure for their submission. It is the expectation that manuscripts contain detailed reflections on methodological considerations.
• Ethics: In studies where data collection or other methods present ethical challenges, the authors should explicate how such issues were navigated including how consent was gained and by whom. An anonymized version of the ethical statement should be included in the manuscript (in addition to appearing on the title page).
• Participant identification: Generally, demographics should be described in narrative form or otherwise reported as a group. Quotations may be linked to particular participants and/or demographic features provided measures are taken to ensure anonymity of participants (e.g., use of pseudonyms).
• Use of checklists: Authors should not include qualitative research checklists, such as COREQ (COnsolidated criteria for REporting Qualitative research).  Generally, authors should use a narrative approach to describe the processes used to enhance the rigor of their study. For additional information on this policy, please read  Why the Qualitative Health Research (QHR) Review Process Does Not Use Checklists
• References: APA format. While there is no limit to the number of references, authors are recommended to use pertinent references only, including literature previously published in QHR . References should be on a separate page.   QHR adheres to the APA 7 reference style. View the APA guidelines to ensure your manuscript conforms to this reference style. Please ensure you check carefully that both your in-text references and list of references are in the correct format.
• Authors are required to disclose the use of generative Artificial Intelligence (such as ChatGPT) and other technologies (such as NVivo, ATLAS. Ti, Quirkos, etc.), whether used to conceive ideas, develop study design, generate data, assist in analysis, present study findings, or other activities formative of qualitative research. We suggest authors provide both a description of the technology, when it was accessed, and how it was used (see  https://uk.sagepub.com/en-gb/eur/chatgpt-and-generative-ai ).
• Manuscripts that receive favorable reviews will not be accepted until any formatting and copy-editing required has been done. 
• Tables, Figures, Artwork, and other graphics should be submitted as separate files rather than incorporated into the main manuscript file. Within the manuscript, indicate where these items should appear (i.e. INSERT TABLE 1 HERE).
• TIFF, JPED, or common picture formats accepted. The preferred format for graphs and line art is EPS.
• Resolution: Rasterized based files (i.e. with .tiff or .jpeg extension) require a resolution of at least 300 dpi (dots per inch). Line art should be supplied with a minimum resolution of 800 dpi.
• Dimension: Check that the artworks supplied match or exceed the dimensions of the journal. Images cannot be scaled up after origination.
• Figures supplied in color will appear in color online regardless of whether or not these illustrations are reproduced in color in the printed version. For specifically requested color reproduction in print, you will receive information regarding the costs from Sage after receipt of your accepted article. 
• Core elements of the manuscript should not be included as supplementary material.
• QHR  is able to host additional materials online (e.g., datasets, podcasts, videos, images etc.) alongside the full-text of the article. For more information please refer to Sage’s general  guidelines on submitting supplemental files .

4. Submitting your manuscript 

QHR  is hosted on Sage Track, a web based online submission and peer review system powered by ScholarOne™ Manuscripts. Visit  https://mc.manuscriptcentral.com/QHR  to login and submit your article online. 

IMPORTANT:  Please check whether you already have an account in the system before trying to create a new one. If you have reviewed or authored for the Journal in the past year it is likely that you will have had an account created.  For further guidance on submitting your manuscript online please visit  ScholarOne Online Help . 

5. Editorial policies 

QHR  adheres to a rigorous double-anonymized reviewing policy in which the identities of both the reviewer and author are always concealed from both parties.

Sage does not permit the use of author-suggested (recommended) reviewers at any stage of the submission process, be that through the web-based submission system or other communication. Reviewers should be experts in their fields and should be able to provide an objective assessment of the manuscript. Our policy is that reviewers should not be assigned to a manuscript if:

•  The reviewer is based at the same institution as any of the co-authors

•  The reviewer is based at the funding body of the manuscript

•  The author has recommended the reviewer

•  The reviewer has provided a personal (e.g. Gmail/Yahoo/Hotmail) email account and an institutional email account cannot be found after performing a basic Google search (name, department and institution). 

Qualitative Health Research  is committed to delivering high quality, fast peer-review for your manuscript, and as such has partnered with Web of Science. Web of Science is a third-party service that seeks to track, verify and give credit for peer review. Reviewers for Qualitative Health Research can opt in to Web of Science in order to claim their reviews or have them automatically verified and added to their reviewer profile. Reviewers claiming credit for their review will be associated with the relevant journal, but the article name, reviewer’s decision, and the content of their review is not published on the site. For more information visit the  Web of Science  website.

The Editor or members of the Editorial Team or Board may occasionally submit their own manuscripts for possible publication in the Journal. In these cases, the peer review process will be managed by alternative members of the Editorial Team or Board and the submitting Editor Team/Board member will have no involvement in the decision-making process. 

Manuscripts should only be submitted for consideration once consent is given by all contributing authors. Those submitting manuscripts should carefully check that all those whose work contributed to the manuscript are acknowledged as contributing authors. The list of authors should include all those who can legitimately claim authorship. This is all those who meet all of the following criteria:

(i)   Made a substantial contribution to the design of the work or acquisition, analysis, interpretation, or presentation of data,  (ii)  Drafted the article or revised it critically for important intellectual content,  (iii) Approved the version to be published,  (iv) Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

Acquisition of funding, collection of data, or general supervision of the research group alone does not constitute authorship, although all contributors who do not meet the criteria for authorship should be listed in the Acknowledgments section. Please refer to the  International Committee of Medical Journal Editors (ICMJE) authorship guidelines   for more information on authorship.

Authors are required to disclose the use of generative Artificial Intelligence (such as ChatGPT) and other technologies (such as NVivo, ATLAS. Ti, Quirkos, etc.), whether used to conceive ideas, develop study design, generate data, assist in analysis, present study findings, or other activities formative of qualitative research. We suggest authors provide both a description of the technology, when it was accessed, and how it was used. This needs to be clearly identified within the text and acknowledged within your Acknowledgements section. Please note that AI bots such as ChatGPT should not be listed as an author. For more details on this policy, please visit  ChatGPT and Generative AI . 

5.3 Acknowledgements

All contributors who do not meet the criteria for authorship should be listed in an Acknowledgements section. Examples of those who might be acknowledged include a person who provided purely technical help, or a department chair who provided only general support.

Please supply any personal acknowledgements separately to the main text to facilitate anonymous peer review. 

Per  ICMJE recommendations , it is best practice to obtain consent from non-author contributors who you are acknowledging in your manuscript.

1.3.1 Writing assistance

Individuals who provided writing assistance, e.g., from a specialist communications company, do not qualify as authors and so should be included in the Acknowledgements section. Authors must disclose any writing assistance – including the individual’s name, company and level of input – and identify the entity that paid for this assistance. It is not necessary to disclose use of language polishing services. 

Qualitative Health Research   requires all authors to acknowledge their funding in a consistent fashion under a separate heading.  Please visit the  Funding Acknowledgements   page on the Sage Journal Author Gateway to confirm the format of the acknowledgment text in the event of funding, or state that: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. 

It is the policy of  Qualitative Health Research to require a declaration of conflicting interests from all authors enabling a statement to be carried within the paginated pages of all published articles.

Please ensure that a ‘Declaration of Conflicting Interests’ statement is included at the end of your manuscript, after any acknowledgements and prior to the references. If no conflict exists, please state that ‘The Author(s) declare(s) that there is no conflict of interest’. For guidance on conflict of interest statements, please see the ICMJE recommendations  here . 

Research involving participants must be conducted according to the  World Medical Association Declaration of Helsinki

Submitted manuscripts should conform to the  ICMJE Recommendations for the Conduct, Reporting, Editing, and Publication of Scholarly Work in Medical Journals :

All manuscripts must state that the relevant Ethics Committee or Institutional Review Board provided (or waived) approval. Please ensure that you blind the name and institution of the review committee until such time as your article has been accepted. The Editor will request authors to replace the name and add the approval number once the article review has been completed. Please note that in itself, simply stating that Ethics Committee or Institutional Review was obtained is not sufficient.  Authors are also required to state in the methods section whether participants provided informed consent, whether the consent was written or verbal, and how it was obtained and by whom.

Please do not submit the participant’s informed consent documents with your article, as this in itself breaches the participant’s confidentiality. The Journal requests that you confirm to us, in writing, that you have obtained informed consent recognizing the documentation of consent itself should be held by the authors/investigators themselves (for example, in a participant’s hospital record or an author’s institution’s archives).

Please also refer to the  ICMJE Recommendations for the Protection of Research Participants . 

6. Publishing Policies 

Sage is committed to upholding the integrity of the academic record. We encourage authors to refer to the Committee on Publication Ethics’  International Standards for Authors  and view the Publication Ethics page on the  Sage Author Gateway .

6.1.1 Plagiarism

Qualitative Health Research  and Sage take issues of copyright infringement, plagiarism or other breaches of best practice in publication very seriously. The Committee on Publication Ethics (COPE) defines plagiarism as: “When somebody presents the work of others (data, words or theories) as if they were his/her own and without proper acknowledgment.” We seek to protect the rights of our authors and we always investigate claims of plagiarism or misuse of published articles. Equally, we seek to protect the reputation of the journal against malpractice. Submitted articles may be checked with duplication-checking software. Where an article, for example, is found to have plagiarised other work or included third-party copyright material without permission or with insufficient acknowledgement, or where the authorship of the article is contested, we reserve the right to take action including, but not limited to: publishing an erratum or corrigendum (correction); retracting the article; taking up the matter with the head of department or dean of the author's institution and/or relevant academic bodies or societies; or taking appropriate legal action.

6.1.2 Prior publication

If material has been previously published it is not generally acceptable for publication in a Sage journal. However, there are certain circumstances where previously published material can be considered for publication. Please refer to the guidance on the  Sage Author Gateway  or if in doubt, contact the Editor at the address given below. 

6.2 Contributor's publishing agreement

Before publication, Sage requires the author as the rights holder to sign a Journal Contributor’s Publishing Agreement. Sage’s Journal Contributor’s Publishing Agreement is an exclusive licence agreement which means that the author retains copyright of the work but grants Sage the sole and exclusive right and licence to publish for the full legal term of copyright. Exceptions may exist where an assignment of copyright is required or preferred by a proprietor other than Sage. In this case copyright in the work will be assigned from the author to the society. For more information please visit the  Sage Author Gateway . 

Qualitative Health Research  offers optional open access publishing via the Sage Choice programme and Open Access agreements, where authors can publish open access either discounted or free of charge depending on the agreement with Sage. Find out if your institution is participating by visiting Open Access Agreements at Sage . For more information on Open Access publishing options at Sage please visit Sage Open Access . For information on funding body compliance, and depositing your article in repositories, please visit Sage’s Author Archiving and Re-Use Guidelines and Publishing Policies .

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Qualitative Research in Global Health Research

• Reference work entry
• First Online: 12 May 2021
• Cite this reference work entry

• Pranee Liamputtong 5 &
• Zoe Sanipreeya Rice 6  

2480 Accesses

1 Citations

This chapter discusses the contribution of qualitative research and its value in global health. Qualitative research alludes to “a broad approach” that qualitative researchers adopt as a means to examine social circumstances. The inquiry posits that people use “what they see, hear, and feel” to make sense of social experiences. There are many features that differentiate qualitative research from the quantitative approach. Fundamentally, it is interpretive. The meanings and interpretation of the participants are the essence of qualitative inquiry. Qualitative research is valuable in many ways. It offers researchers to hear silenced voices, to work with marginalized and vulnerable people, to address social justice issue, and to contribute to the person-centered healthcare and the design of clinical trials and plays an important role in evidence-based global health. Qualitative researchers are seen as constructivists who attempt to find answers in the real world. Fundamentally, qualitative researchers look for meanings that people have constructed. In this chapter, we discuss the value of qualitative research, qualitative inquiry in global health, qualitative research, and evidence-based practice in global health. The chapter also discusses in great depth some distinctiveness of the qualitative research, in particular the inductive nature of qualitative research, methodological frameworks, purposive sampling technique, saturation concept, qualitative data analysis, and the trustworthiness of a qualitative study. We also provide a concrete example of how a qualitative study was undertaken using details from the research project that we have conducted.

• Qualitative inquiry
• Interpretation
• Evidence-based practice in health
• Methodological framework
• Trustworthiness
• Qualitative researcher

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Adams V, Behague D, Caduff C, Löwy I, Ortega F (2019) Re-imagining global health through social medicine. Global Public Health 14(10):1383–1400

Google Scholar  

Avis M (2003) Do we need methodological theory to do qualitative research? Qual Health Res 13(7):995–1004

Article   PubMed   Google Scholar  

Banning M, Hassan M, Faisal S, Hafeez H (2010) Cultural interrelationships and the lived experience of Pakistani breast cancer patients. Eur J On Nur 14:304–309

Baum F (2016) The new public health, 5th edn. Oxford University Press, Melbourne

Bazeley P (2019) Using qualitative data analysis software (QDAS) to assist data analysis. In Liamputtong P (ed) Handbook of Research Methods in Health Social Sciences. Springer, Singapore

Becker TD, Ho-Foster AR, Poku OB, Marobela S, Mehta H, Cao DTX, Yang LS, Blank LI, Dipatane VI, Letumile Rogers Moeng LR, Molebatsi K, Eisenberg MM, Barg FK, Blank MB, Opondo PR, Yang LH (2019) “It’s when the trees blossom”: explanatory beliefs, stigma, and mental illness in the context of HIV in Botswana. Qual Health Res 29(11):1566–1580

Article   PubMed   PubMed Central   Google Scholar  

Berger RJ, Lorenz LS (2016) Disability and qualitative research. In: Berger RJ, Lorenz LS (eds) Disability and qualitative inquiry: methods for rethinking an ableist world (Chapter 1). Taylor & Francis, Hoboken

Chapter   Google Scholar  

Bradbury-Jones C, Breckenridge J, Clark MT, Herber OR, Wagstaff C, Taylor J (2017) The state of qualitative research in health and social science literature: a focused mapping review and synthesis. Int J Soc Res Methodol 20(6):627–645

Article   Google Scholar  

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101

Brinkmann S, Kvale S (2015) InterViews: learning the craft of qualitative research interviewing, 3rd edn. Sage, Thousand Oaks

Brown H (2015) Global health partnerships, governance, and sovereign responsibility in western Kenya. American ethnologist 42(2):340–355

Brownson RC, Baker EA, Leet TL, Gillespie KN, True WR (2011) Evidence-based public health, 2nd edn. Oxford University Press, New York

Bryman A (2016) Social research methods, 5th edn. Oxford University Press, Oxford

Carlson G (2019) Global HIV/AIDS statistics. https://www.avert.org/global-hiv-and-aids-statistics

Carpenter C, Suto M (2008) Qualitative research for occupational and physical therapists: a practical guide. Blackwell Publishing, Oxford

Cassell KD, Braun K, Ka’opua L, Soa F, Nigg C (2014) Samoan body and soul: adapting an evidence-based obesity and cancer prevention program. Qual Health Res 24(12):1658–1672

Creswell JW, Poth CN (2018) Qualitative inquiry and research design: choosing among five approaches, 5th edn. Sage, Thousand Oaks

Denzin NK (2010) The qualitative manifesto: a call to arms. Left Coast Press, Walnut Creek

Denzin NK (2015) What is critical qualitative inquiry? In: Cannella GS, Perez MS, Pasque PA (eds) Critical qualitative inquiry: foundations and futures. Left Coast Press, Walnut Creek, pp 31–50

Denzin NK (2017) Critical qualitative inquiry. Qual Inq 23(1):8–16

Dew K (2007) A health researcher’s guide to qualitative methodologies. Aust N Z J Public Health 31(5):433–437

Fan EL, Uretsky E (2017) In search of results: anthropological interrogations of evidence-based global health. Crit Public Health 27(2):157–162

Flick U (2018) Triangulation. In: Denzin NK, Lincoln YS (eds) The Sage handbook of qualitative research, 5th edn. Sage, Thousand Oaks, pp 444–461

Fontana A, Frey JH (2000) The interview: from structured questions to negotiated text. In: Denzin NK, Lincoln YS (eds) Handbook of qualitative research, 2nd edn. Sage, Thousand Oaks, pp 645–672

Gaudet S, Robert D (2018) A journey through qualitative research: from design to reporting. Sage, London

Book   Google Scholar  

Geertz C (1973) The interpretation of cultures. Basic Books, New York

Giacomini MK (2001) The rocky road: qualitative research as evidence. ACP J Club 134:A11–A12. Retrieved from http://www.acpjc.org/Content/134/ISSUE/ACPJC-2001-134-1-A11.htm

Harper D (2002) Talking about pictures: a case for photo elicitation. Vis Stud 17(1):13–26

Harper D (2012) Visual sociology. Routledge, New York

Hess JJ, Eidson M, Tlumak JE, Raab KK, Luber G (2014) An evidence-based public health approach to climate change adaptation. Environ Health Perspect 122(11):1177–1186

Higginbottom G, Liamputtong P (eds) (2015) Using participatory qualitative research methodologies in health. Sage, London

Hesse-Biber SN (2017) The practice of qualitative research, 3rd edn. Sage, Thousand Oaks

Houser J (2015) Nursing research: reading, using, and crating evidence, 3rd edn. Jones & Bartlett Learning, Sudbury

Jones T, Ho L, Kun KK, Milsom P, Shakpeh J, Ratnayake R, Loewenson R (2018) Rebuilding people-centred maternal health services in post-Ebola Liberia through participatory action research. Glob Public Health. https://doi.org/10.1090/17441692.2018.1427772

Kirmayer LJ (2012) Cultural competence and evidence-based practice in mental health: epistemic communities and the politics of pluralism. Soc Sci Med 75:249–256

Liamputtong P (2007) Researching the vulnerable: Guides to sensitive research methods. Sage, London

Liamputtong P (2010) Performing qualitative cross-cultural research. Cambridge University Press, Cambridge

Liamputtong P (2013a) Women, motherhood and living with HIV/AIDS: a cross-cultural perspective. Springer, Dordrecht

Liamputtong P (2013b) Stigma, discrimination and living with HIV/AIDS: a cross-cultural perspective. Springer, Dordrecht

Liamputtong P (2016) Children, young people and living with HIV/AIDS: a cross-cultural perspective. Springer, Dordrecht

Liamputtong P (2017) The science of words and the science of numbers. In: Liamputtong P (ed) Research methods in health: foundations for evidence-based practice, 3rd edn. Oxford University Press, Melbourne, pp 3–28

Liamputtong P (2019a) Qualitative research methodology and evidence-based practice in public health. In: Liamputtong P (ed) Public health: local and global perspectives, 2nd edn. Cambridge University Press, Melbourne

Liamputtong P (2019b) Handbook of research methods in health social sciences, vol 3. Springer, Singapore

Liamputtong P (2019c) Social determinants of health. Oxford University Press, Melbourne

Liamputtong P (2020) Qualitative research methods, 5th edn. Oxford University Press, Melbourne

Liamputtong P, Serry T (2017) Making sense of qualitative data. In: Liamputtong P (ed) Research methods in health: foundations for evidence-based practice, 3rd edn. Oxford University Press, Melbourne, pp 421–436

Liamputtong P, Suwankhong D (2015) Therapeutic landscapes and Thai women with breast cancer. Soc Sci Med 128(March):263–271

Liamputtong P, Haritavorn N, Kiatying-Angsulee N (2015) Local discourse on antiretrovirals and the lived experience of women living with HIV/AIDS in Thailand. Qual Health Res 25(2):253–263

Lincoln YS, Guba EG (1989) Fourth generation evaluation. Sage, Newbury Park

McLaughlin H (2012) Understanding social work research: evidence-based practice. Sage, London

Merriam SB, Tisdell EJ (2016) Qualitative research: a guide to design and implementation, 4th edn. Jossey-Bass, San Francisco

Miles MB, Huberman AM, Saldaña J (2015) Qualitative data analysis: a methods sourcebook, 3rd edn. Sage, Thousand Oaks

Morse JM (2015a) Data are saturated…. Qual Health Res 25(5):587–588

Morse JM (2015b) Critical analysis of strategies for determining rigor in qualitative inquiry. Qual Health Res 25(9):1212–1222

Morse JM (2018) Reframing rigor in qualitative inquiry. In: Denzin NK, Lincoln YS (eds) The Sage handbook of qualitative research, 5th edn. Sage, Thousand Oaks, pp 796–817

Morse JM, Barrett M, Mayan M, Olson K, Spiers J (2002) Verification strategies for establishing reliability and validity in qualitative research. Int J Qual Methods 1(2):Article 2. www.ualberta.ca/~iiqm/backissues/1_2Final/pdf/morseetal.pdf .

Nathan S, Newman C, Lancaster K (2019) Qualitative interviewing. In: Liamputtong P (ed) Handbook of research methods in health social sciences. Springer, Singapore

O’Reilly M, Parker N (2012) ‘Unsatisfactory saturation’: a critical exploration of the notion of saturated sample sizes in qualitative research. Qual Res 13(2):190–197

Olson K, Young RA, Schultz IZ (2016) Handbook of qualitative health research for evidence-based practice. Springer, New York

Patton MQ (2015) Qualitative research and evaluation methods, 4th edn. Sage, Thousand Oaks

Raines JC (2011) Evaluating qualitative research studies. In: Grinnell RM, Unrau YA (eds) Social work research and evaluation: foundations of evidence-based practice, 9th edn. Oxford University Press, New York, pp 488–503

Rogers AG (2000) When methods matter: qualitative research issues in psychology. In: Brizuela BM, Stewart JP, Carrillo RG, Berger JG (eds) Acts of inquiry in qualitative research. Harvard Educational Review, Cambridge, MA, pp 51–60

Rose G (2007) Visual methodologies: an introduction to the interpretation of visual materials. Sage, London

Rossman GB, Rallis SF (2017) Learning in the field: an introduction to qualitative research, 4th edn. Sage, Thousand Oaks

Rubin HJ, Rubin IS (2012) Qualitative interviewing: the art of hearing data, 3rd edn. Sage, Thousand Oaks

Russell S, Seeley J (2010) The transition to living with HIV as a chronic condition: working to create order and control on anti-retroviral therapy. Soc Sci Med 70(3):375–382

Sankar A, Golin C, Simoni JM, Luborsky M, Pearson C (2006) How qualitative methods contribute to understanding combination antiretroviral therapy adherence. J Acquir Immune Defic Syndr 43(Supplement 1):S54–S68

Serry T, Liamputtong P (2017) The in-depth interviewing method in health. In: Liamputtong P (ed) Research methods in health: foundations for evidence-based practice, 3rd edn. Oxford University Press, Melbourne, pp 67–83

Silverman D (2017) Doing qualitative research, 5th edn. Sage London

Taylor SJ, Bogdan R, DeVault M (2016) Introduction to qualitative research methods: a guidebook and resource. WileySons, Hoboken

Teti M, Majee W, Cheak-Zamora N, Maurer-Batjer A (2019) Understanding health through a different lens: photovoice method. In: Liamputtong P (ed) Handbook of research methods in health social sciences. Singapore, Springer, pp 1147–1166

Tobin GA, Begley CM (2004) Methodological rigour within a qualitative framework. J Adv Nurs 48(4):388–396

Toye F, Williamson E, Williams MA, Fairbank J, Lamb SE (2016) What value can qualitative research add to quantitative research design?: an example from an adolescent idiopathic scoliosis trial feasibility study. Qual Health Res 26(13):1838–1850

UNAIDS (2014) Fact sheet: 2014 statistics. Retrieved http://www.unaids.org/sites/default/files/media_asset/20150714_FS_MDG6_Report_en.pdf

UNAIDS (2016) Children and HIV: fact sheet. Retrieved http://www.unaids.org/sites/default/files/media_asset/FactSheet_Children_en.pdf

UNAIDS (2017) The global HIV/AIDS epidemic. Retrieved https://www.hiv.gov/hiv-basics/overview/data-and-trends/global-statistics

UNAIDS (2019) UNAIDS data 2019. Retrived from https://www.unaids.org/sites/default/files/media_asset/2019-UNAIDS-data_en.pdf

Weber S (2008) Visual images in research. In: Knowles JG, Cole AI (eds) Handbook of the arts in qualitative research: perspectives, methodologies, examples, and issues. Sage, Thousand Oaks, pp 41–53

White AH (2015) Using samples to provide evidence. In: Schmidt NA, Brown JM (eds) Evidence-based practice for nurses: appraisal and application of research, 3rd edn. Jones & Bartlett Learning, Burlington, pp 294–319

White F, Stallones L, Last JM (2014) Global public health: ecological foundations. Oxford University Press, New York

Wilson LA (2019) Quantitative research. In P. Liamputtong (ed.), Handbook of Research Methods in Health Social Sciences. Springer: Singapore

World Health Organization (2011) Breast cancer: prevention and control. Retrieved from http://www.who.int/cancer/detection/breastcancer/en/index.html

World Health Organization (2020) Breast cancer: Prevention and control. Retrieved from https://www.who.int/cancer/detection/breastcancer/en/ Breast cancer: Prevention and control. Retrieved from https://www.who.int/cancer/detection/breastcancer/en/

Yin RK (2016) Qualitative research: from start to finish, 2nd edn. Guildford Press, New York

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Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Copyright Year: 2023

Last Update: 2024

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Table of Contents

• Acknowledgement of Country
• About the authors
• Accessibility statement
• Introduction to research
• Research design
• Data collection
• Data analysis
• Writing qualitative research
• Peer review statement
• Licensing and attribution information
• Version history

Ancillary Material

About the book.

This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

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Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods.  Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos  is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic  is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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How to use and assess qualitative research methods

• Loraine Busetto   ORCID: orcid.org/0000-0002-9228-7875 1 ,
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Neurological Research and Practice volume  2 , Article number:  14 ( 2020 ) Cite this article

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This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 , 8 , 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 , 10 , 11 , 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

From data collection to data analysis

Attributions for icons: see Fig. 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 , 25 , 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 , 32 , 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 , 38 , 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

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Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

Philipsen, H., & Vernooij-Dassen, M. (2007). Kwalitatief onderzoek: nuttig, onmisbaar en uitdagend. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Qualitative research: useful, indispensable and challenging. In: Qualitative research: Practical methods for medical practice (pp. 5–12). Houten: Bohn Stafleu van Loghum.

Chapter   Google Scholar  

Punch, K. F. (2013). Introduction to social research: Quantitative and qualitative approaches . London: Sage.

Kelly, J., Dwyer, J., Willis, E., & Pekarsky, B. (2014). Travelling to the city for hospital care: Access factors in country aboriginal patient journeys. Australian Journal of Rural Health, 22 (3), 109–113.

Article   Google Scholar  

Nilsen, P., Ståhl, C., Roback, K., & Cairney, P. (2013). Never the twain shall meet? - a comparison of implementation science and policy implementation research. Implementation Science, 8 (1), 1–12.

Howick J, Chalmers I, Glasziou, P., Greenhalgh, T., Heneghan, C., Liberati, A., Moschetti, I., Phillips, B., & Thornton, H. (2011). The 2011 Oxford CEBM evidence levels of evidence (introductory document) . Oxford Center for Evidence Based Medicine. https://www.cebm.net/2011/06/2011-oxford-cebm-levels-evidence-introductory-document/ .

Eakin, J. M. (2016). Educating critical qualitative health researchers in the land of the randomized controlled trial. Qualitative Inquiry, 22 (2), 107–118.

May, A., & Mathijssen, J. (2015). Alternatieven voor RCT bij de evaluatie van effectiviteit van interventies!? Eindrapportage. In Alternatives for RCTs in the evaluation of effectiveness of interventions!? Final report .

Google Scholar  

Berwick, D. M. (2008). The science of improvement. Journal of the American Medical Association, 299 (10), 1182–1184.

Article   CAS   Google Scholar  

Christ, T. W. (2014). Scientific-based research and randomized controlled trials, the “gold” standard? Alternative paradigms and mixed methodologies. Qualitative Inquiry, 20 (1), 72–80.

Lamont, T., Barber, N., Jd, P., Fulop, N., Garfield-Birkbeck, S., Lilford, R., Mear, L., Raine, R., & Fitzpatrick, R. (2016). New approaches to evaluating complex health and care systems. BMJ, 352:i154.

Drabble, S. J., & O’Cathain, A. (2015). Moving from Randomized Controlled Trials to Mixed Methods Intervention Evaluation. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 406–425). London: Oxford University Press.

Chambers, D. A., Glasgow, R. E., & Stange, K. C. (2013). The dynamic sustainability framework: Addressing the paradox of sustainment amid ongoing change. Implementation Science : IS, 8 , 117.

Hak, T. (2007). Waarnemingsmethoden in kwalitatief onderzoek. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Observation methods in qualitative research] (pp. 13–25). Houten: Bohn Stafleu van Loghum.

Russell, C. K., & Gregory, D. M. (2003). Evaluation of qualitative research studies. Evidence Based Nursing, 6 (2), 36–40.

Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36 , 717–732.

Yanow, D. (2000). Conducting interpretive policy analysis (Vol. 47). Thousand Oaks: Sage University Papers Series on Qualitative Research Methods.

Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22 , 63–75.

van der Geest, S. (2006). Participeren in ziekte en zorg: meer over kwalitatief onderzoek. Huisarts en Wetenschap, 49 (4), 283–287.

Hijmans, E., & Kuyper, M. (2007). Het halfopen interview als onderzoeksmethode. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [The half-open interview as research method (pp. 43–51). Houten: Bohn Stafleu van Loghum.

Jansen, H. (2007). Systematiek en toepassing van de kwalitatieve survey. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Systematics and implementation of the qualitative survey (pp. 27–41). Houten: Bohn Stafleu van Loghum.

Pv, R., & Peremans, L. (2007). Exploreren met focusgroepgesprekken: de ‘stem’ van de groep onder de loep. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Exploring with focus group conversations: the “voice” of the group under the magnifying glass (pp. 53–64). Houten: Bohn Stafleu van Loghum.

Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41 (5), 545–547.

Boeije H: Analyseren in kwalitatief onderzoek: Denken en doen, [Analysis in qualitative research: Thinking and doing] vol. Den Haag Boom Lemma uitgevers; 2012.

Hunter, A., & Brewer, J. (2015). Designing Multimethod Research. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 185–205). London: Oxford University Press.

Archibald, M. M., Radil, A. I., Zhang, X., & Hanson, W. E. (2015). Current mixed methods practices in qualitative research: A content analysis of leading journals. International Journal of Qualitative Methods, 14 (2), 5–33.

Creswell, J. W., & Plano Clark, V. L. (2011). Choosing a Mixed Methods Design. In Designing and Conducting Mixed Methods Research . Thousand Oaks: SAGE Publications.

Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. BMJ, 320 (7226), 50–52.

O'Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine : Journal of the Association of American Medical Colleges, 89 (9), 1245–1251.

Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality and Quantity, 52 (4), 1893–1907.

Moser, A., & Korstjens, I. (2018). Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. European Journal of General Practice, 24 (1), 9–18.

Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research : an international journal of quality of life aspects of treatment, care and rehabilitation, 24 (5), 1057–1067.

Demian, M. N., Lam, N. N., Mac-Way, F., Sapir-Pichhadze, R., & Fernandez, N. (2017). Opportunities for engaging patients in kidney research. Canadian Journal of Kidney Health and Disease, 4 , 2054358117703070–2054358117703070.

Noyes, J., McLaughlin, L., Morgan, K., Roberts, A., Stephens, M., Bourne, J., Houlston, M., Houlston, J., Thomas, S., Rhys, R. G., et al. (2019). Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members. Health Expectations . 22(4):824–35.

Piil, K., Jarden, M., & Pii, K. H. (2019). Research agenda for life-threatening cancer. European Journal Cancer Care (Engl), 28 (1), e12935.

Hofmann, D., Ibrahim, F., Rose, D., Scott, D. L., Cope, A., Wykes, T., & Lempp, H. (2015). Expectations of new treatment in rheumatoid arthritis: Developing a patient-generated questionnaire. Health Expectations : an international journal of public participation in health care and health policy, 18 (5), 995–1008.

Jun, M., Manns, B., Laupacis, A., Manns, L., Rehal, B., Crowe, S., & Hemmelgarn, B. R. (2015). Assessing the extent to which current clinical research is consistent with patient priorities: A scoping review using a case study in patients on or nearing dialysis. Canadian Journal of Kidney Health and Disease, 2 , 35.

Elsie Baker, S., & Edwards, R. (2012). How many qualitative interviews is enough? In National Centre for Research Methods Review Paper . National Centre for Research Methods. http://eprints.ncrm.ac.uk/2273/4/how_many_interviews.pdf .

Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18 (2), 179–183.

Sim, J., Saunders, B., Waterfield, J., & Kingstone, T. (2018). Can sample size in qualitative research be determined a priori? International Journal of Social Research Methodology, 21 (5), 619–634.

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Busetto, L., Wick, W. & Gumbinger, C. How to use and assess qualitative research methods. Neurol. Res. Pract. 2 , 14 (2020). https://doi.org/10.1186/s42466-020-00059-z

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Using qualitative Health Research methods to improve patient and public involvement and engagement in research

• Danielle E. Rolfe 1 ,
• Vivian R. Ramsden 2 ,
• Davina Banner 3 &
• Ian D. Graham 1  

Research Involvement and Engagement volume  4 , Article number:  49 ( 2018 ) Cite this article

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Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences.

Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team.

This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research.

Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities.

The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research.

Conclusions

Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

Peer Review reports

Patient engagement (or patient and public involvement) in research involves partnering with ‘patients’ (a term more often used in Canada and the US, that is inclusive of individuals, caregivers, and/or members of the public) to facilitate research related to health or healthcare services. Rather than research subjects or participants, patients are engaged as partners in the research process. This partnership is intended to be meaningful and ongoing, from the outset of planning a research project, and/or at various stages throughout the research process. Engagement can include the involvement of patients in defining a research question, identifying appropriate outcomes and methods, collecting and interpreting data, and developing and delivering a knowledge translation strategy [ 1 ].

The concept of engaging non-researchers throughout the research process is not new to participatory health researchers, or integrated knowledge translation researchers, as the latter involves ongoing collaboration with clinicians, health planners and policy makers throughout the research process in order to generate new knowledge [ 2 , 3 ]. Patients, however, are less frequently included as partners on health research teams, or as knowledge users in integrated knowledge translation research teams compared to clinicians, healthcare managers and policy-makers, as these individuals are perceived as having “the authority to invoke change in the practice or policy setting.” (p.2) [ 2 ] Recent requirements for patient engagement by health research funders [ 4 , 5 , 6 ], ,and mandates by most healthcare planners and organizations to engage patients in healthcare improvement initiatives, suggest that it would be prudent for integrated knowledge translation (and indeed all) health researchers to begin engaging patients as knowledge users in many, if not all, of their research projects.

Training and tools for patient engagement are being developed and implemented in Canada via the Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) initiative, in the US via Patient Centered Outcomes Research Institute (PCORI), and very practical resources are already available from the UK’s more established INVOLVE Advisory Group [ 5 , 6 , 7 ]. What is seldom provided by these ‘get started’ guides, however, are rigorous methods and evidence-based approaches to engaging diverse patient perspectives, and ensuring that their experiences, values and advice are appropriately incorporated into the research process.

The purpose of this commentary is to stimulate readers’ further discussion and inquiry into qualitative health research methods as a means of fostering the more meaningfully engagement of patients as partners for research. Specifically, this paper will address issues of: rigour (how do we know that the interpretation of patients’ perspectives has been done well and is applicable to other patients?); representation (are multiple and diverse patient perspectives being sought?); and, reflexivity (is engagement being done ethically and equitably?). This commentary alone is insufficient to guide researchers and patient partners to use the methods presented as part of their patient engagement efforts. However, with increased understanding of these approaches and perhaps guidance from experienced qualitative health researchers, integrated knowledge translation and health researchers alike may be better prepared to engage patients in a meaningful way in research that has the potential to improve health and healthcare experiences and outcomes.

What can be learned from methods utilized in qualitative health research?

There is wide variation in researchers’ and healthcare providers’ openness to engaging patients [ 8 ]. Often, the patients that are engaged are a select group of individuals known to the research team, sometimes do not reflect the target population of the research, are involved at a consultative rather than a partnership level, and are more likely to be involved in the planning rather than the dissemination of research [ 9 , 10 , 11 ]. As a result, patient engagement can be seen as tokenistic and the antithesis of the intention of most patient engagement initiatives, which is to have patients’ diverse experiences and perspectives help to shape what and how research is done. The principles, values, and practices of qualitative health research (e.g., relativism, social equity, inductive reasoning) have rich epistemological traditions that align with the conceptual and practical spirit of patient engagement. It is beyond the scope of this commentary, however, to describe in detail the qualitative research paradigm, and readers are encouraged to gain greater knowledge of this topic via relevant courses and texts. Nevertheless, several qualitative research considerations and methods can be applied to the practice of patient engagement, and the following sections describe three of these: rigour, representation and reflexivity.

Rigour: Interpreting and incorporating patients’ experiences into the design and conduct of research

When patient engagement strategies go beyond the inclusion of a few patient partners on the research team, for example, by using focus groups, interviews, community forums, or other methods of seeking input from a broad range of patient perspectives, the diversity of patients’ experiences or perspectives may be a challenge to quickly draw conclusions from in order to make decisions about the study design. To make these decisions, members of the research team (which should include patient partners) may discuss what they heard about patients’ perspectives and suggestions, and then unsystematically incorporate these suggestions, or they may take a vote, try to achieve consensus, implement a Delphi technique [ 12 ], or use another approach designed specifically for patient engagement like the James Lind Alliance technique for priority setting [ 13 ]. Although the information gathered from patients is not data (and indeed would require ethical review to be used as such), a number of qualitative research practices designed to increase rigour can be employed to help ensure that the interpretation and incorporation of patients’ experiences and perspectives has been done systematically and could be reproduced [ 14 ]. These practices include member checking , dense description , and constant comparative analysis . To borrow key descriptors of rigour from qualitative research, these techniques improve “credibility” (i.e., accurate representations of patients’ experiences and preferences that are likely to be understood or recognized by other patients in similar situations – known in quantitative research as internal validity), and “transferability” (or the ability to apply what was found among a group of engaged patients to other patients in similar contexts – known in quantitative research as external validity) [ 15 ].

Member checking

Member checking in qualitative research involves “taking ideas back to the research participants for their confirmation” (p. 111) [ 16 ]. The objective of member checking is to ensure that a researcher’s interpretation of the data (whether a single interview with a participant, or after analyzing several interviews with participants) accurately reflects the participants’ intended meaning (in the case of a member check with a single participant about their interview), or their lived experience (in the case of sharing an overall finding about several individuals with one or more participants) [ 16 ]. For research involving patient engagement, member checking can be utilized to follow-up with patients who may have been engaged at one or only a few time points, or on an on-going basis with patient partners. A summary of what was understood and what decisions were made based on patients’ recommendations could be used to initiate this discussion and followed up with questions such as, “have I understood correctly what you intended to communicate to me?” or “do you see yourself or your experience(s) reflected in these findings or suggestions for the design of the study?”

Dense description

As with quantitative research, detailed information about qualitative research methods and study participants is needed to enable other researchers to understand the context and focus of the research and to establish how these findings relate more broadly. This helps researchers to not only potentially repeat the study, but to extend its findings to similar participants in similar contexts. Dense description provides details of the social, demographic and health profile of participants (e.g., gender, education, health conditions, etc.), as well as the setting and context of their experiences (i.e., where they live, what access to healthcare they have). In this way, dense description improves the transferability of study findings to similar individuals in similar situations [ 15 ]. To date, most studies involving patient engagement provide limited details about their engagement processes and who was engaged [ 17 ]. This omission may be done intentionally (e.g., to protect the privacy of engaged patients, particularly those with stigmatizing health conditions), or as a practical constraint such as publication word limits. Nonetheless, reporting of patient engagement using some aspects of dense description of participants (as appropriate), the ways that they were engaged, and recommendations that emanated from engaged patients can also contribute to greater transferability and understanding of how patient engagement influenced the design of a research study.

Constant comparative analysis

Constant comparative analysis is a method commonly used in grounded theory qualitative research [ 18 ]. Put simply, the understanding of a phenomenon or experience that a researcher acquires through engaging with participants is constantly redeveloped and refined based on subsequent participant interactions. This process of adapting to new information in order to make it more relevant is similar to processes used in rapid cycle evaluation during implementation research [ 19 ]. This method can be usefully adapted and applied to research involving ongoing collaboration and partnership with several engaged patient partners, and/or engagement strategies that seek the perspectives of many patients at various points in the research process. For example, if, in addition to having ongoing patient partners, a larger group of patients provides input and advice (e.g., a steering or advisory committee) at different stages in the research process, their input may result in multiple course corrections during the design and conduct of the research processes to incorporate their suggestions. These suggestions may result in refinement of earlier decisions made about study design or conduct, and as such, the research process becomes more iterative rather than linear. In this way, engaged patients and patient partners are able to provide their input and experience to improve each step of the research process from formulating an appropriate research question or objective, determining best approaches to conducting the research and sharing it with those most affected by the outcomes.

Representation: Gathering diverse perspectives to design relevant and appropriate research studies

The intention of engaging patients is to have their lived experience of health care or a health condition contribute to the optimization of a research project design [ 20 ]. Development of a meaningful and sustainable relationship with patient partners requires considerable time, a demonstrated commitment to partnership by both the patient partners and the researcher(s), resources to facilitate patient partners’ engagement, and often, an individual designated to support the development of this relationship [ 17 , 21 ]. This may lead some research teams to sustain this relationship with only one or two patients who are often previously known to the research team [ 17 ]. The limitation of this approach is that the experiences of these one or two individuals may not adequately reflect the diverse perspectives of patients that may be affected by the research or its outcomes. The notion of gaining ‘ the patient perspective’ from a single or only a few individuals has already been problematized [ 22 , 23 ]. To be sure, the engagement of a single patient is better than none at all, but the engagement of a broader and diverse population of patients should be considered to better inform the research design, and to help prevent further perpetuation of health disparities. Key issues to be considered include (1) how engagement can be made accessible to patients from diverse backgrounds, and (2) which engagement strategies (e.g., ranging from a community information forum to full partnership on the research team) are most appropriate to reach the target population [ 24 ].

Making engagement accessible

Expecting patient partner(s) to attend regular research team meetings held during working hours in a boardroom setting in a hospital, research institute or university limits the participation of many individuals. To support the participation and diversity of engaged patients, effort should be made to increase the accessibility and emotional safety of engagement initiatives [ 25 ]. A budget must be allocated for patient partners’ transportation, childcare or caregiving support, remuneration for time or time taken off work and, at the very least, covering expenses related to their engagement. Another consideration that is often made by qualitative health researchers is whether brief counselling support can be provided to patients should the sharing of their experiences result in emotional distress. There are some resources that can help with planning for costs [ 26 ], including an online cost calculator [ 27 ].

Engagement strategies

Patient partners can be coached to consider the needs and experiences of people unlike them, but there are other methods of engagement that can help to gain a more fulsome perspective of what is likely a diverse patient population that is the focus of the research study. In qualitative health research, this is known as purposeful or purposive sampling: finding people who can provide information-rich descriptions of the phenomenon under study [ 28 ]. Engagement may require different approaches (e.g., deliberative group processes, community forums, focus groups, and patient partners on the research team), at different times in the research process to reach different individuals or populations (e.g., marginalized patients, or patients or caregivers experiencing illnesses that inhibit their ability to maintain an ongoing relationship with the research team). Engagement strategies of different forms at different times may be required. For example, ongoing engagement may occur with patient partners who are members of the research team (e.g., co-applicants on a research grant), and intermittent engagement may be sought from other patients through other methods that may be more time-limited or accessible to a diverse population of patients (e.g., a one-time focus group, community forum, or ongoing online discussion) to address issues that may arise during various stages of the research or dissemination processes. The result of this approach is that patients are not only consulted or involved (one-time or low commitment methods), but are also members of the research team and have the ability to help make decisions about the research being undertaken.

Engagement can generate a wealth of information from very diverse perspectives. Each iteration of engagement may yield new information. Knowing when enough information has been gathered to make decisions with the research team (that includes patient partners) about how the research may be designed or conducted can be challenging. One approach from qualitative research that can be adapted for patient engagement initiatives is theoretical saturation [ 29 ], or “the point in analysis when…further data gathering and analysis add little new to the conceptualization, though variations can always be discovered.” (p. 263) [ 18 ]. That is, a one-time engagement strategy (e.g., a discussion with a single patient partner) may be insufficient to acquire the diverse perspectives of the individuals that will be affected by the research or its outcomes. Additional strategies (e.g., focus groups or interviews with several individuals) may be initiated until many patients identify similar issues or recommendations.

Engagement approaches should also consider: how patients are initially engaged (e.g., through known or new networks, posted notices, telephone or in-person recruitment) and whether involvement has been offered widely enough to garner multiple perspectives; how patients’ experiences are shared (e.g., community forums, formal meetings, individual or group discussions) and whether facilitation enables broad participation; and finally, how patients’ participation and experiences are incorporated into the research planning and design, with patients having equal decision-making capacity to other research team members. Several publications and tools are available that can help guide researchers who are new to processes of engaging patients in research [ 24 , 30 , 31 , 32 , 33 , 34 ], but unfortunately few address how to evaluate the effectiveness of engagement [ 35 ].

Reflexivity: Ensuring meaningful and authentic engagement

In qualitative research, reflexivity is an ongoing process of “the researcher’s scrutiny of his or her research experience, decisions, and interpretations in ways that bring the researcher into the process and allow the reader to assess how and to what extent the researcher’s interests, positions, and assumptions influenced inquiry. A reflexive stance informs how the researcher conducts his or her research, relates to the research participants, and represents them in written reports,” (p.188–189) [ 16 ]. The concept of reflexivity can be applied to research involving patient engagement by continually and explicitly considering how decisions about the research study were made. All members of the research team must consider (and perhaps discuss): (1) how patient partners are invited to participate in research planning and decision-making; (2) how their input is received relative to other team members (i.e., do their suggestions garner the same respect as researchers’ or providers’?); and, (3) whether engaged patients or patient partners feel sufficiently safe, able and respected to share their experiences, preferences and recommendations with the research team.

Ideally, reflexivity becomes a practice within the research team and may be operationalized through regular check-ins with patients and researchers about their comfort in sharing their views, and whether they feel that their views have been considered and taken onboard. Power dynamics should also be considered during patient engagement initiatives. For example, reflecting on how community forums, focus groups or interviews are to be facilitated, including a consideration of who is at the table/who is not, who speaks/who does not, whose suggestions are implemented/whose are not? Reflexivity can be practiced through informal discussions, or using methods that may allow more candid responses by engaged patients (e.g., anonymous online survey or feedback forms). At the very least, if these practices were not conducted throughout the research process, the research team (including patient partners) should endeavor to reflect upon team dynamics and consider how these may have contributed to the research design or outcomes. For example, were physicians and researchers seen as experts and patients felt less welcome or able to share their personal experiences? Were patients only engaged by telephone rather than in-person and did this influence their ability to easily engage in decision-making? Reflexive practices may be usefully supplemented by formal evaluation of the process of patient engagement from the perspective of patients and other research team members [ 36 , 37 ], and some tools are available to do this [ 35 ].

A note about language

One way to address the team dynamic between researchers, professional knowledge users (such as clinicians or health policy planners) and patients is to consider the language used to engage with patients in the planning of patient engagement strategies. That is, the term ‘patient engagement’ is a construction of an individual’s identity that exists only within the healthcare setting, and in the context of a patient-provider dynamic. This term does not consider how people make decisions about their health and healthcare within a broader context of their family, community, and culture [ 22 , 38 ]. This may be why research communities in some countries (e.g., the United Kingdom) use the term ‘patient and public involvement’. Additionally, research that involves communities defined by geography, shared experiences, cultural or ethnic identity, as is the case with participatory health research, may refer to ‘community engagement.’ Regardless of the term used, partnerships with patients, the public, or with communities need to be conceived instead as person-to-person interactions between researchers and individuals who are most affected by the research. Discussions with engaged patients should be conducted early on to determine how to best describe their role on the team or during engagement initiatives (e.g., as patient partners, community members, or people with lived experience).

Tokenism is the “difference between…the empty ritual of participation and having the real power needed to affect the outcome,” (p.2) [ 39 ]. Ongoing reflection on the power dynamic between researchers and engaged patients, a central tenet of critical qualitative health research [ 40 , 41 ], can increase the likelihood that engagement involves equitable processes and will result in meaningful engagement experiences by patients rather than tokenism [ 36 , 42 ]. Patient engagement initiatives should strive for “partnership” amongst all team members, and not just reflect a patient-clinician or researcher-subject dynamic [ 43 ]. To develop meaningful, authentic and sustainable relationships with engaged patients, methods used for participatory, action or community-based research (approaches that fall under the paradigm of qualitative inquiry) provide detailed experiential guidance [ 44 ]. For example, a realist review of community-based participatory research projects reported that gaining and maintaining trust with patient or community partners, although time-intensive, is foundational to equitable and sustainable partnerships that benefit communities and individuals [ 45 , 46 ]. Additionally, Chapter Nine of the Canadian Tri-Council Policy Statement on Research involving Humans, which has to date been applied to research involving First Nations, Inuit and, Métis Peoples in Canada [ 47 ], provides useful information and direction that can be applied to working with patient partners on research [ 48 ].

Authentic patient engagement should include their involvement at all stages of the research process [ 49 , 50 ], but this is often not the case [ 10 ]. .Since patient partners are not research subjects or participants, their engagement does not (usually) require ethics approval, and they can be engaged as partners as early as during the submission of grant applications [ 49 ]. This early engagement helps to incorporate patients’ perspectives into the proposed research before the project is wedded to particular objectives, outcomes and methods, and can also serve to allocate needed resources to support patient engagement (including remuneration for patient partners’ time). Training in research for patient partners can also support their meaningful engagement by increasing their ability to fully engage in decision-making with other members of the research team [ 51 , 52 ]. Patient partners may also thrive in co-leading the dissemination of findings to healthcare providers, researchers, patients or communities most affected by the research [ 53 ].

Patient engagement has gained increasing popularity, but many research organizations are still at the early stages of developing approaches and methods, many of which are based on experience rather than evidence. As health researchers and members of the public will increasingly need to partner for research to satisfy the overlapping mandate of patient engagement in health policy, healthcare and research, the qualitative research methods highlighted in this commentary provide some suggestions to foster rigorous, meaningful and sustained engagement initiatives while addressing broader issues of power and representation. By incorporating evidence-based methods of gathering and learning from multiple and diverse patient perspectives, we will hopefully conduct better patient engaged research, live out the democratic ideals of patient engagement, and ultimately contribute to research that is more relevant to the lives of patients; as well as, contribute to the improved delivery of healthcare services. In addition to the references provided in this paper, readers are encouraged to learn more about the meaningful engagement of patients in research from several key texts [ 54 , 55 , 56 ].

Abbreviations

Canadian Institutes for Health Research

Patient Centered Outcomes Research Institute

Strategy for Patient Oriented Research

Canadian Institutes of Health Research. Strategy for Patient-Oriented Research. 2014. http://www.cihr-irsc.gc.ca/e/documents/spor_framework-en.pdf . Accessed 27 Sep 2017.

Google Scholar  

Kothari A, Wathen CN. Integrated knowledge translation: digging deeper, moving forward. J Epidemiol Community Health. 2017;71:619–23. https://doi.org/10.1136/jech-2016-208490 .

Article   PubMed   Google Scholar  

Gagliardi AR, Berta W, Kothari A, Boyko J, Urquhart R. Integrated knowledge translation (IKT) in health care: a scoping review. Implement Sci. 2016;11:38. https://doi.org/10.1186/s13012-016-0399-1 .

Article   PubMed   PubMed Central   Google Scholar  

Canadian Institutes of Health Research. Strategy for Patient-Oriented Research - CIHR. http://www.cihr-irsc.gc.ca/e/41204.html . Accessed 20 Sep 2017.

Patient-Centered Outcomes Research Institute. Patient-Centered Outcomes Research Institute website. https://www.pcori.org/ . Accessed 20 Sep 2017.

National Institute for Health Research. INVOLVE | INVOLVE Supporting public involvement in NHS, public health and social care research. http://www.invo.org.uk/ . Accessed 27 Sep 2017.

Canadian Institutes of Health Research. SPOR SUPPORT Units - CIHR. http://www.cihr-irsc.gc.ca/e/45859.html . Accessed 27 Sep 2017.

Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25:626–32.

Hearld KR, Hearld LR, Hall AG. Engaging patients as partners in research: factors associated with awareness, interest, and engagement as research partners. SAGE open Med. 2017;5:2050312116686709. https://doi.org/10.1177/2050312116686709.

Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. https://doi.org/10.1186/1472-6963-14-89 .

Concannon TW, Fuster M, Saunders T, Patel K, Wong JB, Leslie LK, et al. A systematic review of stakeholder engagement in comparative effectiveness and patient-centered outcomes research. J Gen Intern Med. 2014;29:1692–701.

Oostendorp LJM, Durand M-A, Lloyd A, Elwyn G. Measuring organisational readiness for patient engagement (MORE): an international online Delphi consensus study. BMC Health Serv Res. 2015;15:61. https://doi.org/10.1186/s12913-015-0717-3 .

Boddy K, Cowan K, Gibson A, Britten N. Does funded research reflect the priorities of people living with type 1 diabetes? A secondary analysis of research questions. BMJ Open. 2017;7:e016540. https://doi.org/10.1136/bmjopen-2017-016540 .

Mays N, Pope C. Rigour and qualitative research. BMJ Br Med J. 1995;311:109–12.

Article   CAS   Google Scholar  

Krefting L. Rigor in qualitative research: the assessment of trustworthiness. Am J Occup Ther. 1991;45:214–22.

Article   CAS   PubMed   Google Scholar  

Charmaz K. Constructing grounded theory : a practical guide through qualitative analysis. London: Sage Publications; 2006.

Wilson P, Mathie E, Keenan J, McNeilly E, Goodman C, Howe A, et al. ReseArch with patient and public invOlvement: a RealisT evaluation – the RAPPORT study. Heal Serv Deliv Res. 2015;3:1–176. https://doi.org/10.3310/hsdr03380 .

Corbin JM, Strauss AL, Strauss AL. Basics of qualitative research : techniques and procedures for developing grounded theory. Thousand Oaks: Sage Publications; 2008.

Keith RE, Crosson JC, O’Malley AS, Cromp D, Taylor EF. Using the consolidated framework for implementation research (CFIR) to produce actionable findings: a rapid-cycle evaluation approach to improving implementation. Implement Sci. 2017;12:15. https://doi.org/10.1186/s13012-017-0550-7 .

Esmail L, Moore E. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4:133–45. https://doi.org/10.2217/cer.14.79 .

Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014;7:387–95.

Rowland P, McMillan S, McGillicuddy P, Richards J. What is “the patient perspective” in patient engagement programs? Implicit logics and parallels to feminist theories. Heal An Interdiscip J Soc Study Heal Illn Med. 2016. https://doi.org/10.1177/1363459316644494 .

Article   Google Scholar  

Martin GP. “Ordinary people only”: knowledge, representativeness, and the publics of public participation in healthcare. Sociol Health Illn. 2008;30:35–54. https://doi.org/10.1111/j.1467-9566.2007.01027.x .

Snow B, Tweedie K, Pederson A, Shrestha H, Bachmann L. Patient Engagement: Heard and valued. 2013. http://www.cfhi-fcass.ca/sf-docs/default-source/patient-engagement/awesome_workbook-fraserhealth.pdf . Accessed 24 Jan 2018.

Montesanti SR, Abelson J, Lavis JN, Dunn JR. Enabling the participation of marginalized populations: case studies from a health service organization in Ontario. Canada Health Promot Int. 2017;32(4):636–49. https://doi.org/10.1093/heapro/dav118.

The Change Foundation. Should Money Come into It? A Tool for Deciding Whether to Pay Patient- Engagement Participants. Toronto; 2015. http://www.changefoundation.ca/site/wp-content/uploads/2016/05/Should-money-come-into-it.pdf . Accessed 18 June 2018

INVOLVE. Involvement Cost Calculator | INVOLVE. http://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator/ . Accessed 11 Oct 2017.

Patton MQ. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: Sage Publications; 2002.

Kerr C, Nixon A, Wild D. Assessing and demonstrating data saturation in qualitative inquiry supporting patient-reported outcomes research. Expert Rev Pharmacoecon Outcomes Res. 2010;10(3):269–81. https://doi.org/10.1586/erp.10.30 .

Canadian Institutes of Health Research. CIHR’S Citizen Engagement Handbook. http://www.cihr-irsc.gc.ca/e/documents/ce_handbook_e.pdf . Accessed 18 June 2018.

Elliott J, Heesterbeek S, Lukensmeyer CJ, Slocum N. Participatory and deliberative methods toolkit how to connect with citizens: a practitioner’s manual. King Baudouin Foundation; 2005. https://www.kbs-frb.be/en/Virtual-Library/2006/294864 . Accessed 28 Sep 2017.

Robbins M, Tufte J, Hsu C. Learning to “swim” with the experts: experiences of two patient co-investigators for a project funded by the Patient-Centered Outcomes Research Institute. Perm J. 2016;20:85–8.

PubMed   PubMed Central   Google Scholar  

Gauvin F-P, Abelson J, Lavis JN. Strengthening public and patient engagement in health technology assessment in Ontario. 2014. https://www.mcmasterforum.org/docs/default-source/product-documents/evidence-briefs/public-engagement-in-health-technology-assessement-in-ontario-eb.pdf?sfvrsn=2 . Accessed 18 June 2018.

Abelson J, Montesanti S, Li K, Gauvin F-P, Martin E. Effective strategies for interactive public engagement in the development of healthcare policies and Programs. 2010; https://www.cfhi-fcass.ca/sf-docs/default-source/commissionedresearch-reports/Abelson_EN_FINAL.pdf?sfvrsn=0. . Accessed 16 Nov 2018.

Abelson J. Public and patient engagement evaluation tool (version 1.0), vol. 0; 2015. https://www.fhs.mcmaster.ca/publicandpatientengagement/ppeet_request_form.html ! Accessed 18 June 2018

Johnson DS, Bush MT, Brandzel S, Wernli KJ. The patient voice in research—evolution of a role. Res Involv Engagem. 2016;2:6. https://doi.org/10.1186/s40900-016-0020-4 .

Crocker JC, Boylan AM, Bostock J, Locock L. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519–28. https://doi.org/10.1111/hex.12479 .

Renedo A, Marston C. Healthcare professionals’ representations of “patient and public involvement” and creation of “public participant” identities: implications for the development of inclusive and bottom-up community participation initiatives. J Community Appl Soc Psychol. 2011;21:268–80. https://doi.org/10.1002/casp.1092 .

Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ. Tokenism in patient engagement. Fam Pract. 2017;34(3):290–5. https://doi.org/10.1093/fampra/cmw097.

Hart C, Poole JM, Facey ME, Parsons JA. Holding firm: power, push-Back, and opportunities in navigating the liminal space of critical qualitative Health Research. Qual Health Res. 2017;27:1765–74. https://doi.org/10.1177/1049732317715631 .

Eakin JM. Educating critical qualitative health researchers in the land of the randomized controlled trial. Qual Inq. 2016;22:107–18. https://doi.org/10.1177/1077800415617207 .

Safo S, Cunningham C, Beckman A, Haughton L, Starrels JL. “A place at the table:” a qualitative analysis of community board members’ experiences with academic HIV/AIDS research. BMC Med Res Methodol. 2016;16:80. https://doi.org/10.1186/s12874-016-0181-8 .

Thompson J, Bissell P, Cooper C, Armitage CJ, Barber R, Walker S, et al. Credibility and the “professionalized” lay expert: reflections on the dilemmas and opportunities of public involvement in health research. Heal Interdiscip J Soc Study Heal Illn Med. 2012;16:602–18. https://doi.org/10.1177/1363459312441008 .

Burke JG, Jones J, Yonas M, Guizzetti L, Virata MC, Costlow M, et al. PCOR, CER, and CBPR: alphabet soup or complementary fields of Health Research? Clin Transl Sci. 2013;6:493–6. https://doi.org/10.1111/cts.12064 .

Jagosh J, Bush PL, Salsberg J, Macaulay AC, Greenhalgh T, Wong G, et al. A realist evaluation of community-based participatory research: partnership synergy, trust building and related ripple effects. BMC Public Health. 2015;15:725. https://doi.org/10.1186/s12889-015-1949-1 .

Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012;90:311–46. https://doi.org/10.1111/j.1468-0009.2012.00665.x .

Government of Canada IAP on RE. TCPS 2 - Chapter 9 Research Involving the First Nations, Inuit and Métis Peoples of Canada. http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/chapter9-chapitre9/ . Accessed 16 Oct 2017.

Ramsden VR, Crowe J, Rabbitskin N, Rolfe D, Macaulay A. Authentic engagement, co-creation and action research. In: Goodyear-smith F, Mash B, editors. How to do primary care research. Boca Raton: CRC press, medicine, Taylor & Francis Group; 2019.

Ramsden VR, Salsberg J, Herbert CP, Westfall JM, LeMaster J, Macaulay AC. Patient- and community-oriented research: how is authentic engagement identified in grant applications? Can Fam Physician. 2017;63:74–6.

Woolf SH, Zimmerman E, Haley A, Krist AH. Authentic engagement of patients and communities can transform research, practice, and policy. Health Aff. 2016;35:590–4.

Parkes JH, Pyer M, Wray P, Taylor J. Partners in projects: preparing for public involvement in health and social care research. Health Policy. 2014;117:399–408. https://doi.org/10.1016/j.healthpol.2014.04.014 .

Norman N, Bennett C, Cowart S, Felzien M, Flores M, Flores R, et al. Boot camp translation: a method for building a community of solution. J Am Board Fam Med. 2013;26:254–63. https://doi.org/10.3122/jabfm.2013.03.120253 .

Ramsden VR, Rabbitskin N, Westfall JM, Felzien M, Braden J, Sand J. Is knowledge translation without patient or community engagement flawed. Fam Pract. 2016:1–3.

Denzin NK, Lincoln YS. SAGE Handbook of qualitative research. 3rd ed. Thousand Oaks: Sage Publications; 2005.

Pearce V, Baraitser P, Smith G, Greenhalgh T. Experience-based co-design. In: User involvement in health care. Oxford: Wiley-Blackwell; 2010. p. 28–51. https://doi.org/10.1002/9781444325164.ch3 .

Chapter   Google Scholar  

Hulatt I, Lowes L. Involving service users in health and social care research: Routledge; 2005. https://doi.org/10.4324/9780203865651.

Book   Google Scholar  

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Acknowledgements

This paper was drafted in response to a call for concept papers related to integrated knowledge translation issued by the Integrated Knowledge Translation Research Network (CIHR FDN #143237).

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Rolfe, D.E., Ramsden, V.R., Banner, D. et al. Using qualitative Health Research methods to improve patient and public involvement and engagement in research. Res Involv Engagem 4 , 49 (2018). https://doi.org/10.1186/s40900-018-0129-8

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• Published: 04 April 2024

Use of qualitative research in World Health Organisation guidelines: a document analysis

• Melissa Taylor   ORCID: orcid.org/0009-0006-3506-0902 1 ,
• Paul Garner 1 ,
• Sandy Oliver 2 , 3 &
• Nicola Desmond 4  

Health Research Policy and Systems volume  22 , Article number:  44 ( 2024 ) Cite this article

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Guidelines depend on effect estimates, usually derived from randomised controlled trials, to inform their decisions. Qualitative research evidence may improve decisions made but where in the process and the methods to do this have not been so clearly established. We sought to describe and appraise how qualitative research has been used to inform World Heath Organization guidance since 2020.

We conducted a document analysis of WHO guidelines from 2020 to 2022. We purposely sampled guidelines on the topics of maternal and newborn health (MANH) and infectious diseases, as most of the qualitative synthesis to date has been conducted on these topics, likely representing the ‘best case’ scenario. We searched the in-built repository feature of the WHO website and used standardised search terms to identify qualitative reporting. Using deductive frameworks, we described how qualitative evidence was used to inform guidelines and appraised the standards of this use.

Of the 29 guidelines, over half used qualitative research to help guide decisions (18/29). A total of 8 of these used qualitative research to inform the guideline scope, all 18 to inform recommendations, and 1 to inform implementation considerations. All guidelines drew on qualitative evidence syntheses (QES), and five further supplemented this with primary qualitative research. Qualitative findings reported in guidelines were typically descriptive, identifying people’s perception of the benefits and harms of interventions or logistical barriers and facilitators to programme success. No guideline provided transparent reporting of how qualitative research was interpreted and weighed used alongside other evidence when informing decisions, and only one guideline reported the inclusion of qualitative methods experts on the panel. Only a few guidelines contextualised their recommendations by indicating which populations and settings qualitative findings could be applied.

Conclusions

Qualitative research frequently informed WHO guideline decisions particularly in the field of MANH. However, the process often lacked transparency. We identified unmet potential in informing implementation considerations and contextualisation of the recommendations. Use in these areas needs further methods development.

Peer Review reports

Evidence-informed guidance usually includes a critical summary of one or more systematic reviews of reliable research findings to inform the decisions. For simple clinical questions which assess the efficacy of a new drug, systematic reviews of randomised control trials may provide the most appropriate information [ 1 ]. Making recommendations about drugs, vaccines and public health interventions all require reflection on the acceptability or appropriateness of an intervention, and this requires different forms of evidence and types of research [ 2 ]. The value of qualitative methods lies in their ability to pursue systematically ‘what’, ‘why’ or ‘how’ questions that are not easily answerable by experimental methods [ 3 ].

There is an increasing recognition of the importance of the social determinants of health in policy making, given the complex nature of most public health issues [ 4 ]. Qualitative research methods are particularly adept to explore these findings from the individual, community or broader system level [ 4 , 5 ]. Qualitative research may also range from descriptive to explanatory in nature [ 6 ]. Descriptive findings address people’s views or experiences, such as the perception of personal benefits and harms of interventions, and the trade-offs between these. Descriptive findings may also identify and describe unintended consequences of the proposed intervention. Finally, they may identify logistical barriers and facilitators to programme success [ 7 , 8 ]. These aspects are particularly valuable, as they bring forth the patient and health worker voice in decision making [ 9 ].

Explanatory findings, on the other hand, link descriptive perspectives or experiences to aspects of psychological, historical, cultural, economic, social, environmental and political context [ 6 ]. In doing so, they help generate a theoretical understanding of ‘why’ perceptions and experiences occur and may have broader applications to related contexts [ 6 ]. Here qualitative findings may be used to explain how personal attributes and lifestyle impact individuals, how local context impacts group choice to access treatment or diagnosis or how broad structural and health systems can impede their ability to access, benefit or trust health interventions [ 7 , 8 ].

Guideline developers such as the World Health Organisation (WHO) are beginning to draw on qualitative research to inform their decisions [ 2 ], aided by the methodological developments of systematic reviews of qualitative research, known as qualitative evidence syntheses (QES) and their appraisal [ 10 ]. Previous research has documented examples on how qualitative research has so far informed guideline processes, including identifying relevant outcomes, evaluating evidence to produce recommendations and developing implementation considerations [ 11 , 12 , 13 ]. However, it remains unclear how often qualitative research is actually used for these purposes. Further, it is thought that qualitative research does not always fit well within the ‘summary-based and compartmentalised structure’ of the guideline framework [ 12 ], given the wide range of aims of qualitative research, from describing people’s views to explaining the impact of structural barriers to treatment access. Documenting which of these the WHO has drawn on so far will help to further refine guidance for the uptake of qualitative research by Identifying areas of unmet potential.

Furthermore, as with any guideline development, those preparing the reviews and the panels using them need to provide transparent reporting and rigorous appraisal akin to those historically practised with quantitative research in decision-making [ 12 , 14 ]. However, so far, no methodological guidance exists on how best to systematically draw on and evaluate qualitative findings during guideline processes [ 9 ], and it is unclear how often these standards are achieved [ 11 , 12 , 13 ].

Our aim is to describe how qualitative evidence has been used in existing WHO guideline development procedures and appraise the standards of this inclusion.

We used a study design of document analysis to systematically describe and appraise WHO guidelines. Document analysis is a qualitative method commonly used in health policy analysis [ 15 ], which aims to synthesise and appraise textual data to elicit meaning, gain understanding and develop empirical knowledge [ 16 ]. This necessitates a systematic approach; however, standardised methodologies are lacking [ 15 ]. To ensure rigour, we drew on Kayesa and Shung-King [ 15 ], who identified the key steps reported in document analyses: adopting clear inclusion criteria for documents and clear procedures for identifying documents, coding them and extracting data; applying a clear analytical framework to analyse the role of qualitative research cited in policy documents; and presenting the findings of each stage of the process from searching for documents to answering the research question.

Guideline retrieval

A scoping search of the Cochrane Library [ 17 ] identified that QES were most frequently conducted on MANH (6/23 QES) and infectious disease topics (7/23 QES). For this reason, we chose to focus our analysis on these topic areas, as whilst not exhaustive, they may represent the ‘best case scenario’.

We used the in-built document repository feature on WHO’s website [ 18 ] to identify guideline documents. Therefore, only documents published on this web page were eligible for inclusion. Grey literature was not included. The web page allowed for filtering by publication type and year, which was restricted to ‘guideline’ in 2020 and 2021. A 2-year period was chosen to reflect the most current practices of qualitative research at the time of the search. The lead author (M.T.) then screened the guideline titles in the search results for topics relating to Maternal and Newborn Health (MANH) and infectious disease. MANH was defined as any topic covering the health of women during pregnancy, childbirth and the post-partum period and babies’ first month of life. Infectious disease was defined as any topic covering the prevention, diagnosis and treatment of all diseases acquired through human–human or animal–human transmission, including vector-borne diseases. A table detailing the excluded guidelines and justification for this exclusion can be found in Additional file 1: Excluded studies. The final list of included and excluded guidelines was approved by the entire author team.

The unit of analysis used in this study was the section of text describing a qualitative finding within a guideline document. As a result, we performed a second search within the included guideline documents to identify any qualitative reporting. We defined a qualitative study as one that collected data using qualitative methods such as ethnographic observations, in‐depth interviews, focus group discussions and open‐ended survey questions. Appropriate analysis methods included, for example, thematic analysis, narrative analysis, framework analysis, and grounded theory. While we acknowledge that mixed methods studies may contribute qualitative findings, for the purpose of this study they were excluded, as it was not possible to identify which findings had been derived from quantitative or qualitative methods. Initial reading of a sample of three guidelines in-depth identified terms that accompanied qualitative reporting. We then performed a key-word search for the following terms in all guidelines to identify qualitative reporting: ‘qualitative’, ‘accept*’, ‘value’, ‘equit*’, ‘feasib’, ‘interview’ or ‘focus-group discussion’. Sections of text containing the keywords were checked against their corresponding citation to ensure the findings were derived from qualitative studies.

Data extraction and analysis

Data analysis occurred in three phases. First, given the broad range of potential qualitative findings, we sought to understand what ‘type’ guidelines typically drew on. To achieve this, we developed a deductive framework informed by the literature. We crossed (1) the nested individual, community and broader system ecosystems within social determinants of health theory against (2) descriptive to explanatory qualitative research methodology. Within this, we populated the matrix with qualitative research aims derived from literature and discussed in the background of this paper. This provided us with a theoretical overview of the potential contribution of qualitative research (Fig.  1 ). We then coded each qualitative finding contained within guidelines with one of these aims. The framework was validated on a selection of guidelines, which led to the inclusion of one inductive aim of qualitative research: to understand information needs.

Matrix of how qualitative research can contribute to guideline development

We next sought to describe how qualitative research was identified by the guideline and how it was used to inform the scope of the guideline, the intervention recommendation and implementation considerations. Finally, we sought to appraise how qualitative research had been used using analogous standards expected and practised for quantitative methods in decision-making processes. Table 1 guided this process. Extraction domains and questions were initially identified a priori, and any new questions that arose during analysis were shared and discussed within the team to ensure they were appropriate. If new questions were added to the data extraction tool (Table  1 ), all guidelines were re-analysed to ensure a complete dataset.

Search results

Between 2020 and 2022, the WHO published 29 guidelines on the topics MANH and infectious diseases. Seven guidelines were excluded as they did not cover the chosen topics areas. Of the 29 included guidelines, 18 (62%) incorporated qualitative research to inform either the scope, recommendation or implementation considerations. Of the 18 guidelines that used qualitative research, 15/18 guidelines were on topics of MANH, in contrast to 3/18 on infectious diseases. An overview of the search results is shown in Fig.  2 below, and a summary of all included guidelines is detailed in Table  2 .

Overview of guideline search process

Below follows a narrative summary of where the 18 guidelines used qualitative evidence in informing their scope, decisions and implementation considerations. This is followed by an appraisal of this use according to the pre-specified domains of transparency, specificity, certainty and reflexivity.

How qualitative research was used

Overall, qualitative research summarised in guidelines typically provided descriptive understanding of logistical barriers and facilitators to programme success (133 quotations across 18 guidelines) or patient perception of benefits and harms (126 quotations across 18 guidelines). Less frequently, qualitative findings explained the influence of local context of health-seeking behaviours and the influence of local context (51 quotations across 18 guidelines); described information needs (42 quotations across 10 guidelines); explained the influence of personal attributes on health seeking behaviour (42 quotations across 10 guidelines); described unintended consequences (12 quotations across 5 guidelines); or explained how systems function and their impact on individuals (5 quotations across 1 guidelines). Figure  3 provides an overview of these findings with selected example quotations derived from the guidelines presented in this study. A cross comparison of how these roles fed into each stage of the decision-making process is presented below:

Illustration of how WHO guidelines used qualitative research according to their role

Retrieving qualitative research

Guideline documents either specifically commission research to inform their process or identify existing literature. Seven guidelines commissioned QES specifically for their guideline [ 22 , 25 , 28 , 29 , 30 , 31 , 32 ], while four guidelines performed a systematic search of published literature [ 19 , 20 , 33 , 34 ]. However, seven guidelines did not include any methods for how they obtained qualitative research.

Overall, the guidelines in our analysis drew on a total of 38 primary studies and 25 systematic reviews of qualitative research (QES) to inform their recommendations. Guidelines most often drew on 2 qualitative research studies and a maximum of 33 qualitative research studies [ 27 ].

All guidelines that used qualitative research drew on systematic reviews of qualitative evidence, known as QES to inform their process. No guidelines drew exclusively on primary qualitative studies, but five did include them alongside qualitative evidence synthesis data [ 22 , 24 , 25 , 27 , 31 ].

Informing guideline scope

Seven guidelines [ 19 , 20 , 21 , 22 , 23 , 24 , 25 ] on the topic of MANH drew on the same QES [ 26 ] to inform the addition of a quantitative ‘positive postnatal experience outcome’, defined as ‘ in which women, partners, parents, caregivers and families receive information and reassurance in a consistent manner from motivated health workers. Both the women’s and babies’ health, social and developmental needs are recognized, within a resourced and flexible health system that respects their cultural context ’ [ 25 ]. The inclusion of this outcome allowed for prioritising women’s psychosocial and emotional well-being alongside physical health outcomes, such as mortality or morbidity, when evaluating an intervention. One infectious disease guideline [ 27 ] drew on qualitative research to inform the background of 6/99 recommendations. Findings here were often coded as ‘to understand why programmes succeed or fail’, suggesting that qualitative research can be used in this context to detail challenges with current approaches and provide a rationale for the consideration of new interventions and service designs.

Informing the decision to recommend an intervention

All 18 guidelines drew on qualitative research to inform the decision. The frequency of use for this purpose likely reflects the standardisation of the research-to-decision-making framework (EtD) and pre-specified domains of ‘acceptability’, ‘values and preferences’, ‘feasibility’ or ‘equity’ of a proposed intervention. Table 2 provides an overview of which of these domains included qualitative research. Regarding the feasibility of the proposed intervention, 12 guidelines drew on qualitative research. Regarding the acceptability of the proposed intervention, 13 guidelines drew on qualitative research. Regarding the values and preferences relating to the proposed intervention, 17 guidelines drew on qualitative research. Finally, regarding the equity implications of the proposed intervention, five guidelines drew on qualitative research.

Findings that described people’s perception of benefits and harms were typically used in the ‘values and preferences’ domain, which helped to understand the importance patients place on guideline outcomes. They were also used to inform acceptability and feasibility, and it was noted that typically these findings often justified that interventions were acceptable or feasible. In contrast, unacceptable or unfeasible aspects of interventions drew on findings concerned with explaining the influence of local context on health seeking behaviour, understanding how programmes succeed or fail or identifying information needs. Qualitative research was rarely used to identify unintended consequences or to understand how systems function and its impact. These two roles may have important contributions to considerations of equity, yet few guidelines drew on qualitative research to inform this domain.

Depending on the information provided, all but one [ 27 ] of the guidelines then determined a judgement of ‘probably yes’, ‘variable’ or ‘probably no’ to each domain. Judgements of the former two were frequent, and we observed only one occasion in which the acceptability was judged to be ‘probably no’ [ 25 ]. However, ‘varied’ acceptability judgements did not appear to correspond to context specific recommendations or feed into implementation considerations. We found only one example where qualitative research had influenced the overall recommendation and was directly reported in the accompanying justification [ 25 ].

Informing the implementation considerations of an intervention

We found only one guideline where qualitative research had been clearly cited in the designated implementation considerations section for 1/99 recommendations [ 27 ]. This makes it difficult to assess the extent to which qualitative research is used for this component or to delineate considerations that are derived from panel opinion or other forms of research. The qualitative research finding used here stated ‘other challenges include lack of nutrition support’ in reference to adherence support required for children and infants. The reductive nature of the quotation makes it difficult to assess the intended purpose of the use of qualitative research.

Standards of qualitative research use

All MANH guidelines reported judgements about the certainty of evidence by applying the CERQual tool to their QES findings but did not conduct any formal quality assessment on stand-alone primary studies. None of the infectious disease guidelines reported judgements about the certainty of evidence or conducted quality assessments on primary studies.

Transparency

Readers should be able to understand the justification for each recommendation from the research presented [ 12 ]. However, we found that this information was often lacking. A rationale for why the guideline panel judged there to be ‘probably yes’, ‘varied’ or ‘probably no’ acceptability, feasibility, and equity was not provided in any guideline. For some recommendations, the judgement could be easily intuited. For example, a summary of qualitative research that only describes positive viewpoints under acceptability could be reasonably judged to be ‘probably yes’. Yet, when varied viewpoints were presented, it was unclear why acceptability had been labelled ‘probably yes’ as opposed to ‘varied’. Was this due to the relative proportions of conflicting viewpoints or the relative importance of viewpoints?

Some guidelines drew on a mixture of both qualitative and quantitative studies to inform their values, acceptability, feasibility and equity domains. When this occurred, it was not clear how this research was weighed and evaluated in the decision. For example, in one guideline [ 27 ], women were less accepting of the intervention in qualitative interviews in contrast to the surveys which reported high rates of acceptability. Yet the guideline summarised acceptability as ‘high’ and cited quantitative studies to support this. As no quality assessments were performed in any guideline, it is likely that weighting was not dependant on this.

Specificity

Qualitative research can allow for more tailored recommendations that moves beyond what intervention may work in a controlled setting, to which intervention may work in real-life settings and contexts. This is often referred to as the efficacy to effectiveness gap [ 35 ]. However, for this to happen contextualising of recommendations are necessary. This requires narrative summaries of qualitative research to retain sufficient information on the context of findings [ 12 ]. A total of 11 guidelines contextualised a finding at least once. However, overall contextualisation was infrequent and reductive as considerations were labelled as: LMIC settings (54 findings), low-resource settings (2 findings), rural settings (7 findings), HIC settings (3 findings), children (1 finding) and unequal gender relations (2 findings). We acknowledge there is likely to be some crossover between these considerations but have listed them as referred to in the guideline documents. Moreover, contextualised findings did not appear to lead to more nuanced recommendations, e.g. for which populations is this intervention acceptable, or implementation considerations, e.g. how should the implementation be adapted for specific populations.

Reflexivity

Three guidelines in the field of MANH health, but no guidelines in infectious diseases, included someone experienced in qualitative research on the panel. Meanwhile, we sought to understand whether summaries of qualitative research had been produced by the guideline author team, by the guideline panel or in close collaboration, yet no guidelines reported this.

Qualitative research was frequently used in WHO guidelines between 2020 and 2022, although had a larger role in informing MANH than infectious diseases. Within healthcare, qualitative research has its roots in nursing, due to the relative importance of social interventions [ 6 ], and it is likely that the frequent use of qualitative research in MANH is linked to its longer history here, given the similarities in the two fields. This may also explain why some of the MANH guidelines included qualitative expertise, compared with none of the infectious disease guidelines.

We found that qualitative research rarely informed the scope of the guideline or the implementation considerations. Instead, qualitative research most often informed the decision. A similar study reported that 86% of WHO and UK, US and Canadian national guidelines used qualitative research to inform decisions but only 20% to identify clinical questions and 19% to inform implementation considerations [ 36 ]. This may be due to lack of clear citing, which made it difficult to assess accurately the extent of use. However, qualitative research presented in guidelines were often found to touch on issues regarding implementation, and yet this information did not appear to track to the appropriate section. Given that qualitative methods are considered an integral component in wider implementation science, it is surprising to see the lack of qualitative research here [ 37 , 38 ].

Across the different theoretical aims of qualitative research, the most frequently used was ‘describing perception of benefits and harms’ and ‘describing barriers and facilitators to programme success’. In contrast, explanatory findings were less frequently used. Similarly, In National Institute of Health and Care Excellence (NICE) guidelines between 2015 and 2019, over half of qualitative research addressed one of two types of question: “What are the barriers and/or facilitators?” and “What are the information (and support) needs?”, and they were all descriptive in nature [ 39 ]. This may indicate a limited understanding of the potential of qualitative research particularly for more explanatory findings or simply reflect that they infrequently capture these findings to begin with. However, engaging with explanatory findings may allow guideline panels to indicate to national government which findings are likely to be transferable to their context and population groups.

We found that summaries of qualitative research and the process of transforming these into ‘yes’, ‘no’ or ‘varied’ judgments were often reductive, at the expense of the original case complexity and nuance [ 8 , 40 ]. There are several ways recommendations can be contextualised from the perspectives of: geographical, epidemiological, sociocultural, socioeconomic, ethical, legal and political [ 41 ]. Qualitative research may help in understanding how proposed interventions interact with these aspects of context, but this is currently poorly conducted. One driver of this may be in how domains such as ‘acceptability’ are framed and defined. Guideline developers drew on the following definition of acceptability: ‘the extent to which that intervention is considered to be reasonable among those receiving, delivering or affected by the intervention’ [ 13 ]. However, acceptability can include affective attitude, burden, ethicality, intervention coherence, opportunity costs, perceived effectiveness and self-efficacy [ 42 ].

We found that guidelines failed to address or consider quality when interpreting primary qualitative research. Similarly, national UK guidelines by the National Institute of Health and Care Excellence (NICE) between 2003 and 2019 rarely conducted quality appraisal [ 39 , 43 ]. High quality, rigorous evidence is central to the principles of evidence-based practice [ 1 ], and it is important that appropriate standards are applied to qualitative research, not only to ensure the usability of the findings but also to institutionalise the credibility of the methodology as a whole. The use of qualitative research also lacked transparency as it was often unclear how the information had been interpreted and evaluated. Aside from a transparency issue, it is possible that qualitative research was just not a key influencer in most decisions and mainly relegated to supportive roles in guideline processes [ 44 ].

Study limitations

This study has some limitations. First, we collected guideline documents from a relatively short time frame. The trends documented in this review may be an artefact of 2020–2022, specifically, and do not describe general trends in qualitative research use. Second, lack of clear and transparent reporting on the use of qualitative research does not necessarily mean that, for example, it did not directly feed into overall judgements, or implementation considerations. Document analysis is limited by the availability of public documents, and it may be that further information is contained within meeting notes, email exchanges and other private reports that we cannot access. Finally, we chose to focus on the topics of MANH and infectious disease as they account for a large portion of qualitative research, but the use of qualitative research may be different for other topic areas.

Qualitative research frequently informed WHO guideline decisions particularly in the field of MANH and was rarely used to inform guidelines relating to infectious diseases. However, the process of how qualitative evidence was used and evaluated often lacked transparency. We identified unmet potential in informing implementation considerations and contextualisation of the recommendations. Use in these areas needs further methods development.

Availability of data and materials

The coded guideline documents and data extraction tables are available from the authors upon request.

Abbreviations

Maternal and newborn health

World Health Organisation

National Institute of Health and Care Excellence

• Qualitative evidence synthesis

Low-and middle-income country

High income country

Evidence to decision

Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn’t. BMJ. 1996;312(7023):71–2.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Lewin S, Glenton C. Are we entering a new era for qualitative research? Using qualitative evidence to support guidance and guideline development by the World Health Organization. Int J Equity Health. 2018;17(1):126.

Article   PubMed   PubMed Central   Google Scholar  

Isaacs A. An overview of qualitative research methodology for public health researchers. Int J Med Public Health. 2014;4(4):318.

Article   Google Scholar  

Gopinathan U, Buse K. How can WHO transform its approach to social determinants of health? BMJ. 2022;8:376.

Google Scholar  

Dahlgren GWM. Policies and strategies to promote social equity in health. Sweden: Stockholm; 1991.

Kearney MH. Focus on research methods: Levels and applications of qualitative research evidence. Res Nurs Health. 2001;24(2):145–53.

Article   CAS   PubMed   Google Scholar  

Patton MQ. Qualitative research and evaluation methods: theory and practice. 4th ed. Thousand Oaks: SAGE Publications Inc; 2015. p. 832.

Tolley EE, Ulin PR, Mack N, Elizabeth TR, Succop SM. Qualitative methods in public health: a field guide for applied research. 2nd ed. Hoboken: John Wiley & Sons; 2016. p. 480.

Carmona C, Baxter S, Carroll C. Systematic review of the methodological literature for integrating qualitative evidence syntheses into health guideline development. Res Synth Methods. 2021;12(4):491–505.

Article   PubMed   Google Scholar  

Lewin S, Booth A, Glenton C, Munthe-Kaas H, Rashidian A, Wainwright M, et al. Applying GRADE-CERQual to qualitative evidence synthesis findings: Introduction to the series. Implement Sci. 2018;13(1):1–10. https://doi.org/10.1186/s13012-017-0688-3 .

Downe S, Finlayson KW, Lawrie TA, Lewin SA, Glenton C, Rosenbaum S, et al. Qualitative Evidence Synthesis (QES) for Guidelines: Paper 1-using qualitative evidence synthesis to inform guideline scope and develop qualitative findings statements. Health Res Policy Syst. 2019;17(1):1–12. https://doi.org/10.1186/s12961-019-0467-5 .

Lewin S, Glenton C, Lawrie TA, Downe S, Finlayson KW, Rosenbaum S, et al. Qualitative Evidence Synthesis (QES) for Guidelines: paper 2-using qualitative evidence synthesis findings to inform evidence-to-decision frameworks and recommendations. Health Res Policy Syst. 2019;17(1):1–8.

Glenton C, Lewin S, Lawrie TA, Barreix M, Downe S, Finlayson KW, et al. Qualitative Evidence Synthesis (QES) for Guidelines: paper 3-using qualitative evidence syntheses to develop implementation considerations and inform implementation processes. Health Res Policy Syst. 2019;17(1):1–4.

Ford N, Thomas R, Grove J. Transparency: a central principle underpinning trustworthy guidelines. J Clin Epidemiol. 2022;142:246.

Kayesa NK, Shung-King M. The role of document analysis in health policy analysis studies in low and middle-income countries: lessons for HPA researchers from a qualitative systematic review. Health Policy OPEN. 2020. https://doi.org/10.1016/j.hpopen.2020.100024 .

Bowen GA. Document analysis as a qualitative research method. Qual Res J. 2009;9(2):27–40.

Cochrane library. 2023. https://www.cochranelibrary.com/ . Accessed 25 Mar 2024.

WHO Publications. 2023. https://www.who.int/publications/i?publishingoffices=c09761c0-ab8e-4cfa-9744-99509c4d306b . Accessed 25 Mar 2024.

World Health Organisation. WHO antenatal care recommendations for a positive pregnancy experience Nutritional interventions update: Multiple micronutrient supplements during pregnancy.

World Health Organisation. WHO recommendations on antiplatelet agents for the prevention of pre-eclampsia.

World Health Organisation. WHO antenatal care recommendations for a positive pregnancy experience Nutritional interventions update: zinc supplements during pregnancy.

World Health Organisation. WHO recommendations on drug treatment for non-severe hypertension in pregnancy.

World Health Organisation. WHO antenatal care recommendations for a positive pregnancy experience Nutritional interventions update: Vitamin D supplements during pregnancy.

World Health Organisation. Calcium supplementation before pregnancy for the prevention of pre-eclampsia and its complications.

World Health Organization, Special Programme of Research D. WHO recommendations on maternal and newborn care for a positive postnatal experience. p. 224.

Downe S, Finlayson K, Tunçalp Ö, Gülmezoglu AM. Provision and uptake of routine antenatal services: a qualitative evidence synthesis. Cochrane Database Syst Rev. 2019. https://doi.org/10.1002/14651858.CD012392.pub2/full .

World Health Organization. Consolidated guidelines on HIV prevention, testing, treatment, service delivery and monitoring : recommendations for a public health approach. p. 548.

World Health Organisation. WHO guideline for screening and treatment of cervical pre-cancer lesions for cervical cancer prevention use of mRNA tests for human papillomavirus (HPV). p. 51.

World Health Organisation. WHO recommendation on Umbilical vein injection of oxytocin for the treatment of retained placenta.

World Health Organisation. Vaginal preparation with antiseptic agents for women undergoing caesarean section. Geneva: World Health Organization; 2021.

World Health Organization. Guideline: infant feeding in areas of Zika virus transmission. Geneva: World Health Organization; 2021.

World Health Organisation. WHO recommendation on uterine balloon tamponade for the treatment of postpartum haemorrhage. Geneva: World Health Organization; 2021.

World Health Organisation. WHO recommendation on Advance misoprostol distribution to pregnant women for prevention of postpartum haemorrhage.

World Health Organisation. WHO recommendation on Routes of oxytocin administration for the prevention of postpartum haemorrhage after vaginal birth.

Nordon C, Karcher H, Groenwold RHH, Ankarfeldt MZ, Pichler F, Chevrou-Severac H, et al. The ‘efficacy-effectiveness gap’: Historical background and current conceptualization. Val Health. 2016;19(1):75–81.

Wang YY, Wang YY, Wang YY, Liang DD, Liang DD, Liang DD, et al. An exploration of how developers use qualitative evidence: content analysis and critical appraisal of guidelines. BMC Med Res Methodol. 2020;20(1):1–28. https://doi.org/10.1186/s12874-020-01041-8 .

Hamilton AB, Finley EP. Qualitative methods in implementation research: an introduction. Psychiatr Res. 2019;280:112516.

Ramanadhan S, Revette AC, Lee RM, Aveling EL. Pragmatic approaches to analyzing qualitative data for implementation science: an introduction. Implement Sci Commun. 2021;2(1):1–10. https://doi.org/10.1186/s43058-021-00174-1 .

Carmona C, Baxter S, Carroll C. The conduct and reporting of qualitative evidence syntheses in health and social care guidelines: a content analysis. BMC Med Res Methodol. 2022;22(1):267.

Horton L. Making qualitative data more visible in policy: a critical appraisal of meta-synthesis. Qual Res. 2020;20(5):534–48.

Booth A, Moore G, Flemming K, Garside R, Rollins N, Tunçalp Ö, et al. Taking account of context in systematic reviews and guidelines considering a complexity perspective analysis. BMJ Glob Health. 2019;4:840. https://doi.org/10.1136/bmjgh-2018-000840 .

Sekhon M, Cartwright M, Francis JJ. Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework. BMC Health Serv Res. 2017. https://doi.org/10.1186/s12913-017-2031-8 .

Tan TPYSTSE. Use of qualitative research as evidence in the clinical guideline program of the National Institute for Health and Clinical Excellence. Int J Evid Based Healthc. 2009;7(3):169–72.

Stern E, Stame N, Mayne J, Forss K, Davies R, Befani B. Broadening the range of designs and methods for impact evaluations sharing the benefits of trade DFID’S Aid for Trade Portfolio Monitoring & Evaluation Framework. 2012.

World Health Organisation. Guidelines for the management of symptomatic sexually transmitted infections guidelines. 2021.

World Health Organization. Guideline for Preventive Chemotherapy for the Control of Taenia solium Taeniasis. Guideline for Preventive Chemotherapy for the Control of Taenia solium Taeniasis. Pan American Health Organization; 2021. https://iris.paho.org/handle/10665.2/54800 . Accessed 7 Aug 2023.

World Health Organization. Recommendations and guidance on hepatitis C virus self-testing. p 20.

World Health Organisation. WHO guidelines for plague management: revised recommendations for the use of rapid diagnostic tests, fluoroquinolones for case management and personal protective equipment for prevention of post-mortem transmission. Geneva: World Health Organization; 2021.

World Health Organisation. Who guideline on mass drug administration of azithromycin to children under five years of age to promote child survival.

World Health Organisation. WHO guidelines for the prevention of sexual transmission of Zika virus.

World Health Organisation. Driving impact through programme monitoring and management guidelines HIV strategic information for impact. Geneva: World Health Organization; 2020.

World Health Organisation. Guidelines for the management of pregnant and breastfeeding women in the context of Ebola virus disease Clinic.

World Health Organization. Diagnosing and managing disseminated histoplasmosis among people living with HIV. 2020. https://www.who.int/publications/i/item/9789240006430 . Accessed 7 Aug 2023.

World Health Organisation. WHO recommendations on Choice of antiseptic agent and method of application for preoperative skin preparation for caesarean section. Geneva: World Health Organization; 2021.

World Health Organisation. WHO recommendation on Routine antibiotic prophylaxis for women undergoing operative vaginal birth. Geneva: World Health Organization; 2021.

World Health Organisation. Prophylactic antibiotics for women undergoing caesarean section. Geneva: World Health Organization; 2021.

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Acknowledgements

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Melissa Taylor and Sandy Oliver are supported by the Research, Evidence and Development Initiative (READ‐It) project. READ‐It (project number 300342‐104) is funded by UK aid from the UK Government; however, the views expressed do not necessarily reflect the UK Government's official policies.

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Melissa Taylor & Paul Garner

EPPI-Centre, Social Science Research Unit, UCL Institute of Education, University College London, London, UK

Sandy Oliver

Africa Centre for Evidence, Faculty of Humanities, University of Johannesburg, Johannesburg, South Africa

Department of International Public Health, Liverpool School of Tropical Medicine, Liverpool, UK

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Contributions

M.T. conducted data collection, analysis and interpretation in consultation with P.G., S.O. and N.D. M.T. wrote the first and subsequent drafts of the manuscript, with comments and revision from P.G., S.O. and N.D. All authors read and approved the final manuscript.

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Correspondence to Melissa Taylor .

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A qualitative study of rural healthcare providers’ views of social, cultural, and programmatic barriers to healthcare access

• Nicholas C. Coombs 1 ,
• Duncan G. Campbell 2 &
• James Caringi 1  

BMC Health Services Research volume  22 , Article number:  438 ( 2022 ) Cite this article

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Ensuring access to healthcare is a complex, multi-dimensional health challenge. Since the inception of the coronavirus pandemic, this challenge is more pressing. Some dimensions of access are difficult to quantify, namely characteristics that influence healthcare services to be both acceptable and appropriate. These link to a patient’s acceptance of services that they are to receive and ensuring appropriate fit between services and a patient’s specific healthcare needs. These dimensions of access are particularly evident in rural health systems where additional structural barriers make accessing healthcare more difficult. Thus, it is important to examine healthcare access barriers in rural-specific areas to understand their origin and implications for resolution.

We used qualitative methods and a convenience sample of healthcare providers who currently practice in the rural US state of Montana. Our sample included 12 healthcare providers from diverse training backgrounds and specialties. All were decision-makers in the development or revision of patients’ treatment plans. Semi-structured interviews and content analysis were used to explore barriers–appropriateness and acceptability–to healthcare access in their patient populations. Our analysis was both deductive and inductive and focused on three analytic domains: cultural considerations, patient-provider communication, and provider-provider communication. Member checks ensured credibility and trustworthiness of our findings.

Five key themes emerged from analysis: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US.

Conclusions

Inadequate access to healthcare is an issue in the US, particularly in rural areas. Rural healthcare consumers compose a hard-to-reach patient population. Too few providers exist to meet population health needs, and fragmented communication impairs rural health systems’ ability to function. These issues exacerbate the difficulty of ensuring acceptable and appropriate delivery of healthcare services, which compound all other barriers to healthcare access for rural residents. Each dimension of access must be monitored to improve patient experiences and outcomes for rural Americans.

Peer Review reports

Unequal access to healthcare services is an important element of health disparities in the United States [ 1 ], and there remains much about access that is not fully understood. The lack of understanding is attributable, in part, to the lack of uniformity in how access is defined and evaluated, and the extent to which access is often oversimplified in research [ 2 ]. Subsequently, attempts to address population-level barriers to healthcare access are insufficient, and access remains an unresolved, complex health challenge [ 3 , 4 , 5 ]. This paper presents a study that aims to explore some of the less well studied barriers to healthcare access, particularly those that influence healthcare acceptability and appropriateness.

In truth, healthcare access entails a complicated calculus that combines characteristics of individuals, their households, and their social and physical environments with characteristics of healthcare delivery systems, organizations, and healthcare providers. For one to fully ‘access’ healthcare, they must have the means to identify their healthcare needs and have available to them care providers and the facilities where they work. Further, patients must then reach, obtain, and use the healthcare services in order to have their healthcare needs fulfilled. Levesque and colleagues critically examined access conceptualizations in 2013 and synthesized all ways in which access to healthcare was previously characterized; Levesque et al. proposed five dimensions of access: approachability, acceptability, availability, affordability and appropriateness [ 2 ]. These refer to the ability to perceive, seek, reach, pay for, and engage in services, respectively.

According to Levesque et al.’s framework, the five dimensions combine to facilitate access to care or serve as barriers. Approachability indicates that people facing health needs understand that healthcare services exist and might be helpful. Acceptability represents whether patients see healthcare services as consistent or inconsistent with their own social and cultural values and worldviews. Availability indicates that healthcare services are reached both physically and in a timely manner. Affordability simplifies one’s capacity to pay for healthcare services without compromising basic necessities, and finally, appropriateness represents the fit between healthcare services and a patient’s specific healthcare needs [ 2 ]. This study focused on the acceptability and appropriateness dimensions of access.

Before the novel coronavirus (SARS-CoV-2; COVID-19) pandemic, approximately 13.3% of adults in the US did not have a usual source of healthcare [ 6 ]. Millions more did not utilize services regularly, and close to two-thirds reported that they would be debilitated by an unexpected medical bill [ 7 , 8 , 9 ]. Findings like these emphasized a fragility in the financial security of the American population [ 10 ]. These concerns were exacerbated by the pandemic when a sudden surge in unemployment increased un- and under-insurance rates [ 11 ]. Indeed, employer-sponsored insurance covers close to half of Americans’ total cost of illness [ 12 ]. Unemployment linked to COVID-19 cut off the lone outlet to healthcare access for many. Health-related financial concerns expanded beyond individuals, as healthcare organizations were unequipped to manage a simultaneous increase in demand for specialized healthcare services and a steep drop off for routine revenue-generating healthcare services [ 13 ]. These consequences of the COVID-19 pandemic all put additional, unexpected pressure on an already fragmented US healthcare system.

Other structural barriers to healthcare access exist in relation to the rural–urban divide. Less than 10% of US healthcare resources are located in rural areas where approximately 20% of the American population resides [ 14 ]. In a country with substantially fewer providers per capita compared to many other developed countries, persons in rural areas experience uniquely pressing healthcare provider shortages [ 15 , 16 ]. Rural inhabitants also tend to have lower household income, higher rates of un- or under-insurance, and more difficulty with travel to healthcare clinics than urban dwellers [ 17 ]. Subsequently, persons in rural communities use healthcare services at lower rates, and potentially preventable hospitalizations are more prevalent [ 18 ]. This disparity often leads rural residents to use services primarily for more urgent needs and less so for routine care [ 19 , 20 , 21 ].

The differences in how rural and urban healthcare systems function warranted a federal initiative to focus exclusively on rural health priorities and serve as counterpart to Healthy People objectives [ 22 ]. The rural determinants of health, a more specific expression of general social determinants, add issues of geography and topography to the well-documented social, economic and political factors that influence all Americans’ access to healthcare [ 23 ]. As a result, access is consistently regarded as a top priority in rural areas, and many research efforts have explored the intersection between access and rurality, namely within its less understood dimensions (acceptability and appropriateness) [ 22 ].

Acceptability-related barriers to care

Acceptability represents the dimension of healthcare access that affects a patient’s ability to seek healthcare, particularly linked to one’s professional values, norms and culture [ 2 ]. Access to health information is an influential factor for acceptable healthcare and is essential to promote and maintain a healthy population [ 24 ]. According to the Centers for Disease Control and Prevention, health literacy or a high ‘health IQ’ is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others, which impacts healthcare use and system navigation [ 25 ]. The literature indicates that lower levels of health literacy contribute to health disparities among rural populations [ 26 , 27 , 28 ]. Evidence points to a need for effective health communication between healthcare organizations and patients to improve health literacy [ 24 ]. However, little research has been done in this area, particularly as it relates to technologically-based interventions to disseminate health information [ 29 ].

Stigma, an undesirable position of perceived diminished status in an individual’s social position, is another challenge that influences healthcare acceptability [ 30 ]. Those who may experience stigma fear negative social consequences in relation to care seeking. They are more likely to delay seeking care, especially among ethnic minority populations [ 31 , 32 ]. Social media presents opportunities for the dissemination of misleading medical information; this runs further risk for stigma [ 33 ]. Stigma is difficult to undo, but research has shown that developing a positive relationship with a healthcare provider or organization can work to reduce stigma among patients, thus promoting healthcare acceptability [ 34 ].

A provider’s attempts to engage patients and empower them to be active decision-makers regarding their treatment has also been shown to improve healthcare acceptability. One study found that patients with heart disease who completed a daily diary of weight and self-assessment of symptoms, per correspondence with their provider, had better care outcomes than those who did not [ 35 ]. Engaging with household family members and involved community healers also mitigates barriers to care, emphasizing the importance of a team-based approach that extends beyond those who typically provide healthcare services [ 36 , 37 ]. One study, for instance, explored how individuals closest to a pregnant woman affect the woman’s decision to seek maternity care; partners, female relatives, and community health-workers were among the most influential in promoting negative views, all of which reduced a woman’s likelihood to access care [ 38 ].

Appropriateness-related barriers to care

Appropriateness marks the dimension of healthcare access that affects a patient’s ability to engage, and according to Levesque et al., is of relevance once all other dimensions (the ability to perceive, seek, reach and pay for) are achieved [ 2 ]. The ability to engage in healthcare is influenced by a patient’s level of empowerment, adherence to information, and support received by their healthcare provider. Thus, barriers to healthcare access that relate to appropriateness are often those that indicate a breakdown in communication between a patient with their healthcare provider. Such breakdown can involve a patient experiencing miscommunication, confrontation, and/or a discrepancy between their provider’s goals and their own goals for healthcare. Appropriateness represents a dimension of healthcare access that is widely acknowledged as an area in need of improvement, which indicates a need to rethink how healthcare providers and organizations can adapt to serve the healthcare needs of their communities [ 39 ]. This is especially true for rural, ethnic minority populations, which disproportionately experience an abundance of other barriers to healthcare access. Culturally appropriate care is especially important for members of minority populations [ 40 , 41 , 42 ]. Ultimately, patients value a patient-provider relationship characterized by a welcoming, non-judgmental atmosphere [ 43 , 44 ]. In rural settings especially, level of trust and familiarity are common factors that affect service utilization [ 45 ]. Evidence suggests that kind treatment by a healthcare provider who promotes patient-centered care can have a greater overall effect on a patient’s experience than a provider’s degree of medical knowledge or use of modern equipment [ 46 ]. Of course, investing the time needed to nurture close and caring interpersonal connections is particularly difficult in under-resourced, time-pressured rural health systems [ 47 , 48 ].

The most effective way to evaluate access to healthcare largely depends on which dimensions are explored. For instance, a population-based survey can be used to measure the barrier of healthcare affordability. Survey questions can inquire directly about health insurance coverage, care-related financial burden, concern about healthcare costs, and the feared financial impacts of illness and/or disability. Many national organizations have employed such surveys to measure affordability-related barriers to healthcare. For example, a question may ask explicitly about financial concerns: ‘If you get sick or have an accident, how worried are you that you will not be able to pay your medical bills?’ [ 49 ]. Approachability and availability dimensions of access are also studied using quantitative analysis of survey questions, such as ‘Is there a place that you usually go to when you are sick or need advice about your health?’ or ‘Have you ever delayed getting medical care because you couldn’t get through on the telephone?’ In contrast, the remaining two dimensions–acceptability and appropriateness–require a qualitative approach, as the social and cultural factors that determine a patient’s likelihood of accepting aspects of the services that are to be received (acceptability) and the fit between those services and the patient’s specific healthcare needs (appropriateness) can be more abstract [ 50 , 51 ]. In social science, qualitative methods are appropriate to generate knowledge of what social events mean to individuals and how those individuals interact within them; these methods allow for an exploration of depth rather than breadth [ 52 , 53 ]. Qualitative methods, therefore, are appropriate tools for understanding the depth of healthcare providers’ experiences in the inherently social context of seeking and engaging in healthcare.

In sum, acceptability- and appropriateness-related barriers to healthcare access are multi-layered, complex and abundant. Ensuring access becomes even more challenging if structural barriers to access are factored in. In this study, we aimed to explore barriers to healthcare access among persons in Montana, a historically underserved, under-resourced, rural region of the US. Montana is the fourth largest and third least densely populated state in the country; more than 80% of Montana counties are classified as non-core (the lowest level of urban/rural classification), and over 90% are designated as health professional shortage areas [ 54 , 55 ]. Qualitative methods supported our inquiry to explore barriers to healthcare access related to acceptability and appropriateness.

Participants

Qualitative methods were utilized for this interpretive, exploratory study because knowledge regarding barriers to healthcare access within Montana’s rural health systems is limited. We chose Montana healthcare providers, rather than patients, as the population of interest so we may explore barriers to healthcare access from the perspective of those who serve many persons in rural settings. Inclusion criteria required study participants to provide direct healthcare to patients at least one-half of their time. We defined ‘provider’ as a healthcare organization employee with clinical decision-making power and the qualifications to develop or revise patients’ treatment plans. In an attempt to capture a group of providers with diverse experience, we included providers across several types and specialties. These included advanced practice registered nurses (APRNs), physicians (MDs and DOs), and physician assistants (PAs) who worked in critical care medicine, emergency medicine, family medicine, hospital medicine, internal medicine, pain medicine, palliative medicine, pediatrics, psychiatry, and urgent care medicine. We also included licensed clinical social workers (LCSWs) and clinical psychologists who specialize in behavioral healthcare provision.

Recruitment and Data Collection

We recruited participants via email using a snowball sampling approach [ 56 ]. We opted for this approach because of its effectiveness in time-pressured contexts, such as the COVID-19 pandemic, which has made healthcare provider populations hard to reach [ 57 ]. Considering additional constraints with the pandemic and the rural nature of Montana, interviews were administered virtually via Zoom video or telephone conferencing with Zoom’s audio recording function enabled. All interviews were conducted by the first author between January and September 2021. The average length of interviews was 50 min, ranging from 35 to 70 min. There were occasional challenges experienced during interviews (poor cell phone reception from participants, dropped calls), in which case the interviewer remained on the line until adequate communication was resumed. All interviews were included for analysis and transcribed verbatim into NVivo Version 12 software. All qualitative data were saved and stored on a password-protected University of Montana server. Hard-copy field notes were securely stored in a locked office on the university’s main campus.

Data analysis included a deductive followed by an inductive approach. This dual analysis adheres to Levesque’s framework for qualitative methods, which is discussed in the Definition of Analytic Domains sub-section below. Original synthesis of the literature informed the development of our initial deductive codebook. The deductive approach was derived from a theory-driven hypothesis, which consisted of synthesizing previous research findings regarding acceptability- and appropriateness-related barriers to care. Although the locations, patient populations and specific type of healthcare services varied by study in the existing literature, several recurring barriers to healthcare access were identified. We then operationalized three analytic domains based on these findings: cultural considerations, patient-provider communication, and provider-provider communication. These domains were chosen for two reasons: 1) the terms ‘culture’ and ‘communication’ were the most frequently documented characteristics across the studies examined, and 2) they each align closely with the acceptability and appropriateness dimensions of access to healthcare, respectively. In addition, ‘culture’ is included in the definition of acceptability and ‘communication’ is a quintessential aspect of appropriateness. These domains guided the deductive portion of our analysis, which facilitated the development of an interview guide used for this study.

Interviews were semi-structured to allow broad interpretations from participants and expand the open-ended characterization of study findings. Data were analyzed through a flexible coding approach proposed by Deterding and Waters [ 58 ]. Qualitative content analysis was used, a method particularly beneficial for analyzing large amounts of qualitative data collected through interviews that offers possibility of quantifying categories to identify emerging themes [ 52 , 59 ]. After fifty percent of data were analyzed, we used an inductive approach as a formative check and repeated until data saturation, or the point at which no new information was gathered in interviews [ 60 ]. At each point of inductive analysis, interview questions were added, removed, or revised in consideration of findings gathered [ 61 ]. The Standards for Reporting Qualitative Research (SRQR) was used for reporting all qualitative data for this study [ 62 ]. The first and third authors served as primary and secondary analysts of the qualitative data and collaborated to triangulate these findings. An audit approach was employed, which consisted of coding completed by the first author and then reviewed by the third author. After analyses were complete, member checks ensured credibility and trustworthiness of findings [ 63 ]. Member checks consisted of contacting each study participant to explain the study’s findings; one-third of participants responded and confirmed all findings. All study procedures were reviewed and approved by the Human Subjects Committee of the authors’ institution’s Institutional Review Board.

Definitions of Analytic Domains

Cultural considerations.

Western health systems often fail to consider aspects of patients’ cultural perspectives and histories. This can manifest in the form of a providers’ lack of cultural humility. Cultural humility is a process of preventing imposition of one’s worldview and cultural beliefs on others and recognizing that everyone’s conception of the world is valid. Humility cultivates sensitive approaches in treating patients [ 64 ]. A lack of cultural humility impedes the delivery of acceptable and appropriate healthcare [ 65 ], which can involve low empathy or respect for patients, or dismissal of culture and traditions as superstitions that interfere with standard treatments [ 66 , 67 ]. Ensuring cultural humility among all healthcare employees is a step toward optimal healthcare delivery. Cultural humility is often accomplished through training that can be tailored to particular cultural- or gender-specific populations [ 68 , 69 ]. Since cultural identities and humility have been marked as factors that can heavily influence patients’ access to care, cultural considerations composed our first analytic domain. To assess this domain, we asked participants how they address the unique needs of their patients, how they react when they observe a cultural behavior or attitude from a patient that may not directly align with their treatment plan, and if they have received any multicultural training or training on cultural considerations in their current role.

Patient-provider communication

Other barriers to healthcare access can be linked to ineffective patient-provider communication. Patients who do not feel involved in healthcare decisions are less likely to adhere to treatment recommendations [ 70 ]. Patients who experience communication difficulties with providers may feel coerced, which generates disempowerment and leads patients to employ more covert ways of engagement [ 71 , 72 ]. Language barriers can further compromise communication and hinder outcomes or patient progress [ 73 , 74 ]. Any miscommunication between a patient and provider can affect one’s access to healthcare, namely affecting appropriateness-related barriers. For these reasons, patient-provider communication composed our second analytic domain. We asked participants to highlight the challenges they experience when communicating with their patients, how those complications are addressed, and how communication strategies inform confidentiality in their practice. Confidentiality is a core ethical principle in healthcare, especially in rural areas that have smaller, interconnected patient populations [ 75 ].

Provider-Provider Communication

A patient’s journey through the healthcare system necessitates sufficient correspondence between patients, primary, and secondary providers after discharge and care encounters [ 76 ]. Inter-provider and patient-provider communication are areas of healthcare that are acknowledged to have some gaps. Inconsistent mechanisms for follow up communication with patients in primary care have been documented and emphasized as a concern among those with chronic illness who require close monitoring [ 68 , 77 ]. Similar inconsistencies exist between providers, which can lead to unclear care goals, extended hospital stays, and increased medical costs [ 78 ]. For these reasons, provider-provider communication composed our third analytic domain. We asked participants to describe the approaches they take to streamline communication after a patient’s hospital visit, the methods they use to ensure collaborative communication between primary or secondary providers, and where communication challenges exist.

Healthcare provider characteristics

Our sample included 12 providers: four in family medicine (1 MD, 1 DO, 1 PA & 1 APRN), three in pediatrics (2 MD with specialty in hospital medicine & 1 DO), three in palliative medicine (2 MDs & 1 APRN with specialty in wound care), one in critical care medicine (DO with specialty in pediatric pulmonology) and one in behavioral health (1 LCSW with specialty in trauma). Our participants averaged 9 years (range 2–15) as a healthcare provider; most reported more than 5 years in their current professional role. The diversity of participants extended to their patient populations as well, with each participant reporting a unique distribution of age, race and level of medical complexity among their patients. Most participants reported that a portion of their patients travel up to five hours, sometimes across county- or state-lines, to receive care.

Theme 1: A friction exists between aspects of patients’ rural identities and healthcare systems

Our participants comprised a collection of medical professions and reported variability among health-related reasons their patients seek care. However, most participants acknowledged similar characteristics that influence their patients’ challenges to healthcare access. These identified factors formed categories from which the first theme emerged. There exists a great deal of ‘rugged individualism’ among Montanans, which reflects a self-sufficient and self-reliant way of life. Stoicism marked a primary factor to characterize this quality. One participant explained:

True Montanans are difficult to treat medically because they tend to be a tough group. They don’t see doctors. They don’t want to go, and they don’t want to be sick. That’s an aspect of Montana that makes health culture a little bit difficult.

Another participant echoed this finding by stating:

The backwoods Montana range guy who has an identity of being strong and independent probably doesn’t seek out a lot of medical care or take a lot of medications. Their sense of vitality, independence and identity really come from being able to take care and rely on themselves. When that is threatened, that’s going to create a unique experience of illness.

Similar responses were shared by all twelve participants; stoicism seemed to be heavily embedded in many patient populations in Montana and serves as a key determinant of healthcare acceptability. There are additional factors, however, that may interact with stoicism but are multiply determined. Stigma is an example of this, presented in this context as one’s concern about judgement by the healthcare system. Respondents were openly critical of this perception of the healthcare system as it was widely discussed in interviews. One participant stated:

There is a real perception of a punitive nature in the medical community, particularly if I observe a health issue other than the primary reason for one’s hospital visit, whether that may be predicated on medical neglect, delay of care, or something that may warrant a report to social services. For many of the patients and families I see, it’s not a positive experience and one that is sometimes an uphill barrier that I work hard to circumnavigate.

Analysis of these factors suggest that low use of healthcare services may link to several characteristics, including access problems. Separately, a patient’s perceived stigma from healthcare providers may also impact a patient’s willingness to receive services. One participant put it best by stating

Sometimes, families assume that I didn’t want to see them because they will come in for follow up to meet with me but end up meeting with another provider, which is frustrating because I want to maintain patients on my panel but available time and resource occasionally limits me from doing so. It could be really hard adapting to those needs on the fly, but it’s an honest miss.

When a patient arrives for a healthcare visit and experiences this frustration, it may elicit a patient’s perceptions of neglect or disorganization. This ‘honest miss’ may, in turn, exacerbate other acceptable-related barriers to care.

Theme 2: Facilitating access to healthcare requires application of and respect for cultural differences

The biomedical model is the standard of care utilized in Western medicine [ 79 , 80 ]. However, the US comprises people with diverse social and cultural identities that may not directly align with Western conceptions of health and wellness. Approximately 11.5% of the Montana population falls within an ethnic minority group. 6.4% are of American Indian or Alaska Native origin, 0.5% are of Black or African American origin, 0.8% are of Asian origin and 3.8% are of multiple or other origins. [ 81 ]. Cultural insensitivity is acknowledged in health services research as an active deterrent for appropriate healthcare delivery [ 65 ]. Participants for this study were asked how they react when a patient brings up a cultural attitude or behavior that may impact the proposed treatment plan. Eight participants noted a necessity for humility when this occurs. One participant conceptualized this by stating:

When this happens, I learn about individuals and a way of life that is different to the way I grew up. There is a lot of beauty and health in a non-patriarchal, non-dominating, non-sexist framework, and when we can engage in such, it is really expansive for my own learning process.

The participants who expressed humility emphasized that it is best to work in tandem with their patient, congruently. Especially for those with contrasting worldviews, a provider and a patient working as a team poses an opportunity to develop trust. Without it, a patient can easily fall out of the system, further hindering their ability to access healthcare services in the future. One participant stated:

The approach that ends up being successful for a lot of patients is when we understand their modalities, and they have a sense we understand those things. We have to show understanding and they have to trust. From there, we can make recommendations to help get them there, not decisions for them to obey, rather views based on our experiences and understanding of medicine.

Curiosity was another reaction noted by a handful of participants. One participant said:

I believe patients and their caregivers can be engaged and loving in different ways that don’t always follow the prescribed approach in the ways I’ve been trained, but that doesn’t necessarily mean that they are detrimental. I love what I do, and I love learning new things or new approaches, but I also love being surprised. My style of medicine is not to predict peoples’ lives, rather to empower and support what makes life meaningful for them.

Participants mentioned several other characteristics that they use in practice to prevent cultural insensitivity and support a collaborative approach to healthcare. Table 1 lists these facilitating characteristics and quotes to explain the substance of their benefit.

Consensus among participants indicated that the use of these protective factors to promote cultural sensitivity and apply them in practice is not standardized. When asked, all but two participants said they had not received any culturally-based training since beginning their practice. Instead, they referred to developing skills through “on the job training” or “off the cuff learning.” The general way of medicine, one participant remarked, was to “throw you to the fire.” This suggested that use of standardized cultural humility training modules for healthcare providers was not common practice. Many attributed this to time constraints.

Individual efforts to gain culturally appropriate skills or enhance cultural humility were mentioned, however. For example, three participants reported that they attended medical conferences to discuss cultural challenges within medicine, one participant sought out cultural education within their organization, and another was invited by Native American community members to engage in traditional peace ceremonies. Participants described these additional efforts as uncommon and outside the parameters of a provider’s job responsibilities, as they require time commitments without compensation.

Additionally, eight participants said they share their personal contact information with patients so they may call them directly for medical needs. The conditions and frequency with which this is done was variable and more common among providers in specialized areas of medicine or those who described having a manageable patient panel. All who reported that they shared their personal contact information described it as an aspect of rural health service delivery that is atypical in other, non-rural healthcare systems.

Theme 3: Communication between healthcare providers is systematically fragmented

Healthcare is complex and multi-disciplinary, and patients’ treatment is rarely overseen by a single provider [ 82 ]. The array of provider types and specialties is vast, as is the range of responsibilities ascribed to providers. Thus, open communication among providers both within and between healthcare systems is vital for the success of collaborative healthcare [ 83 ]. Without effective communication achieved between healthcare providers, the appropriate delivery of healthcare services may be become compromised. Our participants noted that they face multiple challenges that complicate communication with other providers. Miscommunication between departments, often implicating the Emergency Department (ED), was a recurring point noted among participants. One participant who is a primary care physician said:

If one of my patients goes to the ER, I don’t always get the notes. They’re supposed to send them to the patient’s primary care doc. The same thing happens with general admissions, but again, I often find out from somebody else that my patient was admitted to the hospital.

This failure to communicate can negatively impact the patient, particularly if time sensitivity or medical complexity is essential to treatment. A patient’s primary care physician is the most accurate source of their medical history; without an effective way to obtain and synthesize a patient’s health information, there may be increased risk of medical error. One participant in a specialty field stated:

One of the biggest barriers I see is obtaining a concise description of a patient’s history and needs. You can imagine if you’re a mom and you’ve got a complicated kid. You head to the ER. The ER doc looks at you with really wide eyes, not knowing how to get information about your child that’s really important.

This concern was highlighted with a specific example from a different participant:

I have been unable to troubleshoot instances when I send people to the ER with a pretty clear indication for admission, and then they’re sent home. For instance, I had an older fellow with pretty severe chronic kidney disease. He presented to another practitioner in my office with shortness of breath and swelling and appeared to have newly onset decompensated heart failure. When I figured this out, I sent him to the ER, called and gave my report. The patient later came back for follow up to find out not only that they had not been admitted but they lost no weight with outpatient dialysis . I feel like a real opportunity was missed to try to optimize the care of the patient simply because there was poor communication between myself and the ER. This poor guy… He ended up going to the ER four times before he got admitted for COVID-19.

In some cases, communication breakdown was reported as the sole cause of a poor outcome. When communication is effective, each essential member of the healthcare team is engaged and collaborating with the same information. Some participants called this process ‘rounds’ when a regularly scheduled meeting is staged between a group of providers to ensure access to accurate patient information. Accurate communication may also help build trust and improve a patient’s experience. In contrast, ineffective communication can result in poor clarity regarding providers’ responsibilities or lost information. Appropriate delivery of healthcare considers the fit between providers and a patient’s specific healthcare needs; the factors noted here suggest that provider-provider miscommunication can adversely affect this dimension of healthcare access.

Another important mechanism of communication is the sharing of electronic medical records (EMRs), a process that continues to shift with technological advances. Innovation is still recent enough, however, for several of our study participants to be able to recall a time when paper charts were standard. Widespread adoption and embrace of the improvements inherent in electronic medical records expanded in the late 2000’s [ 84 ]. EMRs vastly improved the ability to retain, organize, safeguard, and transfer health information. Every participant highlighted EMRs at one point or another and often did so with an underlying sense of anger or frustration. Systematic issues and problems with EMRs were discussed. One participant provided historical context to such records:

Years back, the government aimed to buy an electronic medical record system, whichever was the best, and a number of companies created their own. Each were a reasonable system, so they all got their checks and now we have four completely separate operating systems that do not talk to each other. The idea was to make a router or some type of relay that can share information back and forth. There was no money in that though, so of course, no one did anything about it. Depending on what hospital, clinic or agency you work for, you will most likely work within one of these systems. It was a great idea; it just didn’t get finished.

Seven participants confirmed these points and their impacts on making coordination more difficult, relying on outdated communication strategies more often than not. Many noted this even occurs between facilities within the same city and in separate small metropolitan areas across the state. One participant said:

If my hospital decides to contract with one EMR and the hospital across town contracts with another, correspondence between these hospitals goes back to traditional faxing. As a provider, you’re just taking a ‘fingered crossed’ approach hoping that the fax worked, is picked up, was put in the appropriate inbox and was actually looked at. Information acquisition and making sure it’s timely are unforeseen between EMRs.

Participants reported an “astronomic” number of daily faxes and telephone calls to complete the communication EMRs were initially designed to handle. These challenges are even more burdensome if a patient moves from out of town or out of state; obtaining their medical records was repeatedly referred to as a “chore” so onerous that it often remains undone. Another recurring concern brought up by participants regarded accuracy within EMRs to lend a false sense of security. They are not frequently updated, not designed to be family-centered and not set up to do anything automatically. One participant highlighted these limitations by stating:

I was very proud of a change I made in our EMR system [EPIC], even though it was one I never should have had to make. I was getting very upset because I would find out from my nursing assistant who read the obituary that one of my patients had died. There was a real problem with the way the EMR was notifying PCP’s, so I got an EPIC-level automated notification built into our EMR so that any time a patient died, their status would be changed to deceased and a notification would be sent to their PCP. It’s just really awful to find out a week later that your patient died, especially when you know these people and their families really well. It’s not good care to have blind follow up.

Whether it be a physical or electronic miscommunication between healthcare providers, the appropriate delivery of healthcare can be called to question

Theme 4: Time and resource constraints disproportionately harm rural health systems

Several measures of system capacity suggest the healthcare system in the US is under-resourced. There are fewer physicians and hospital beds per capita compared to most comparable countries, and the growth of healthcare provider populations has stagnated over time [ 15 ]. Rural areas, in particular, are subject to resource limitations [ 16 ]. All participants discussed provider shortages in detail. They described how shortages impact time allocation in their day-to-day operations. Tasks like patient intakes, critical assessments, and recovering information from EMRs take time, of which most participants claimed to not have enough of. There was also a consensus in having inadequate time to spend on medically complex cases. Time pressures were reported to subsequently influence quality of care. One participant stated:

With the constant pace of medicine, time is not on your side. A provider cannot always participate in an enriching dialogue with their patients, so rather than listen and learn, we are often coerced into the mindset of ‘getting through’ this patient so we can move on. This echoes for patient education during discharge, making the whole process more arduous than it otherwise could be if time and resources were not as sparse.

Depending on provider type, specialty, and the size of patient panels, four participants said they have the luxury of extending patient visits to 40 + minutes. Any flexibility with patient visits was regarded as just that: a luxury. Very few providers described the ability to coordinate their schedules as such. This led some study participants to limit the number of patients they serve. One participant said:

We simply don’t have enough clinicians, which is a shame because these people are really skilled, exceptional, brilliant providers but are performing way below their capacity. Because of this, I have a smaller case load so I can engage in a level of care that I feel is in the best interest of my patients. Everything is a tradeoff. Time has to be sacrificed at one point or another. This compromise sets our system up to do ‘ok’ work, not great work.

Of course, managing an overly large number of patients with high complexity is challenging. Especially while enduring the burden of a persisting global pandemic, participants reflected that the general outlook of administering healthcare in the US is to “do more with less.” This often forces providers to delegate responsibilities, which participants noted has potential downsides. One participant described how delegating patient care can cause problems.

Very often will a patient schedule a follow up that needs to happen within a certain time frame, but I am unable to see them myself. So, they are then placed with one of my mid-level providers. However, if additional health issues are introduced, which often happens, there is a high-risk of bounce-back or need to return once again to the hospital. It’s an inefficient vetting process that falls to people who may not have specific training in the labs and imaging that are often included in follow up visits. Unfortunately, it’s a forlorn hope to have a primary care physician be able to attend all levels of a patient’s care.

Several participants described how time constraints stretch all healthcare staff thin and complicate patient care. This was particularly important among participants who reported having a patient panel exceeding 1000. There were some participants, however, who praised the relationships they have with their nurse practitioners and physician’s assistants and mark transparency as the most effective way to coordinate care. Collectively, these clinical relationships were built over long standing periods of time, a disadvantage to providers at the start of their medical career. All but one participant with over a decade of clinical experience mentioned the usefulness of these relationships. The factors discussed in Theme 4 are directly linked to the Availability dimension of access to healthcare. A patient’s ability to reach care is subject to the capacity of their healthcare provider(s). Additionally, further analysis suggests these factors also link to the Appropriateness dimension because the quality of patient-provider relationships may be negatively impacted if a provider’s time is compromised.

Theme 5: Profits are prioritized over addressing barriers to healthcare access in the US.

The US healthcare system functions partially for-profit in the public and private sectors. The federal government provides funding for national programs such as Medicare, but a majority of Americans access healthcare through private employer plans [ 85 ]. As a result, uninsurance rates influence healthcare access. Though the rate of the uninsured has dropped over the last decade through expansion of the Affordable Care Act, it remains above 8 percent [ 86 ]. Historically, there has been ethical criticism in the literature of a for-profit system as it is said to exacerbate healthcare disparities and constitute unfair competition against nonprofit institutions. Specifically, the US healthcare system treats healthcare as a commodity instead of a right, enables organizational controls that adversely affect patient-provider relationships, undermines medical education, and constitutes a medical-industrial complex that threatens influence on healthcare-related public policy [ 87 ]. Though unprompted by the interviewer, participants raised many of these concerns. One participant shared their views on how priorities stand in their practice:

A lot of the higher-ups in the healthcare system where I work see each patient visit as a number. It’s not that they don’t have the capacity to think beyond that, but that’s what their role is, making sure we’re profitable. That’s part of why our healthcare system in the US is as broken as it is. It’s accentuated focus on financially and capitalistically driven factors versus understanding all these other barriers to care.

Eight participants echoed a similar concept, that addressing barriers to healthcare access in their organizations is largely complicated because so much attention is directed on matters that have nothing to do with patients. A few other participants supported this by alluding to a “cherry-picking” process by which those at the top of the hierarchy devote their attention to the easiest tasks. One participant shared an experience where contrasting work demands between administrators and front-line clinical providers produces adverse effects:

We had a new administrator in our hospital. I had been really frustrated with the lack of cultural awareness and curiosity from our other leaders in the past, so I offered to meet and take them on a tour of the reservation. This was meant to introduce them to kids, families and Tribal leaders who live in the area and their interface with healthcare. They declined, which I thought was disappointing and eye-opening.

Analysis of these factors suggest that those who work directly with patients understand patient needs better than those who serve in management roles. This same participant went on to suggest an ulterior motive for a push towards telemedicine, as administrators primarily highlight the benefit of billing for virtual visits instead of the nature of the visits themselves.

This study explored barriers and facilitators to healthcare access from the perspective of rural healthcare providers in Montana. Our qualitative analysis uncovered five key themes: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US. Themes 2 and 3 were directly supported by earlier qualitative studies that applied Levesque’s framework, specifically regarding healthcare providers’ poor interpersonal quality and lack of collaboration with other providers that are suspected to result from a lack of provider training [ 67 , 70 ]. This ties back to the importance of cultural humility, which many previous culture-based trainings have referred to as cultural competence. Cultural competence is achieved through a plethora of trainings designed to expose providers to different cultures’ beliefs and values but induces risk of stereotyping and stigmatizing a patient’s views. Therefore, cultural humility is the preferred idea, by which providers reflect and gain open-ended appreciation for a patient’s culture [ 88 ].

Implications for Practice

Perhaps the most substantial takeaway is how embedded rugged individualism is within rural patient populations and how difficult that makes the delivery of care in rural health systems. We heard from participants that stoicism and perceptions of stigma within the system contribute to this, but other resulting factors may be influential at the provider- and organizational-levels. Stoicism and perceived stigma both appear to arise, in part, from an understandable knowledge gap regarding the care system. For instance, healthcare providers understand the relations between primary and secondary care, but many patients may perceive both concepts as elements of a single healthcare system [ 89 ]. Any issue experienced by a patient when tasked to see both a primary and secondary provider may result in a patient becoming confused [ 90 ]. This may also overlap with our third theme, as a disjointed means of communication between healthcare providers can exacerbate patients’ negative experiences. One consideration to improve this is to incorporate telehealth programs into an existing referral framework to reduce unnecessary interfacility transfers; telehealth programs have proven effective in rural and remote settings [ 91 ].

In fact, telehealth has been rolled out in a variety of virtual platforms throughout its evolution, its innovation matched with continued technological advancement. Simply put, telehealth allows health service delivery from a distance; it allows knowledge and practice of clinical care to be in a different space than a patient. Because of this, a primary benefit of telehealth is its impact on improving patient-centered outcomes among those living in rural areas. For instance, text messaging technology improves early infant diagnosis, adherence to recommended diagnostic testing, and participant engagement in lifestyle change interventions [ 92 , 93 , 94 ]. More sophisticated interventions have found their way into smartphone-based technology, some of which are accessible even without an internet connection [ 95 , 96 ]. Internet accessibility is important because a number of study participants noted internet connectivity as a barrier for patients who live in low resource communities. Videoconferencing is another function of telehealth that has delivered a variety of health services, including those which are mental health-specific [ 97 ], and mobile health clinics have been used in rural, hard-to-reach settings to show the delivery of quality healthcare is both feasible and acceptable [ 98 , 99 , 100 ]. While telehealth has potential to reduce a number of healthcare access barriers, it may not always address the most pressing healthcare needs [ 101 ]. However, telehealth does serve as a viable, cost-effective alternative for rural populations with limited physical access to specialized services [ 102 ]. With time and resource limitations acknowledged as a key theme in our study, an emphasis on expanding telehealth services is encouraged as it will likely have significant involvement on advancing healthcare in the future, especially as the COVID-19 pandemic persists [ 103 ].

Implications for Policy

One could argue that most of the areas of fragmentation in the US healthcare system can be linked to the very philosophy on which it is based: an emphasis on profits as highest priority. Americans are, therefore, forced to navigate a health service system that does not work solely in their best interests. It is not surprising to observe lower rates of healthcare usage in rural areas, which may be a result from rural persons’ negative views of the US healthcare system or a perception that the system does not exist to support wellness. These perceptions may interact with ‘rugged individualism’ to squelch rural residents’ engagement in healthcare. Many of the providers we interviewed for this study appeared to understand this and strived to improve their patients’ experiences and outcomes. Though these efforts are admirable, they may not characterize all providers who serve in rural areas of the US. From a policy standpoint, it is important to recognize these expansive efforts from providers. If incentives were offered to encourage maximum efforts be made, it may lessen burden due to physician burnout and fatigue. Of course, there is no easy fix to the persisting limit of time and resources for providers, problems that require workforce expansion. Ultimately, though, the current structure of the US healthcare system is failing rural America and doing little to help the practice of rural healthcare providers.

Implications for Future Research

It is important for future health systems research efforts to consider issues that arise from both individual- and system-level access barriers and where the two intersect. Oftentimes, challenges that appear linked to a patient or provider may actually stem from an overarching system failure. If failures are critically and properly addressed, we may refine our understanding of what we can do in our professional spaces to improve care as practitioners, workforce developers, researchers and advocates. This qualitative study was exploratory in nature. It represents a step forward in knowledge generation regarding challenges in access to healthcare for rural Americans. Although mental health did not come up by design in this study, future efforts exploring barriers to healthcare access in rural systems should focus on access to mental healthcare. In many rural areas, Montana included, rates of suicide, substance use and other mental health disorders are highly prevalent. These characteristics should be part of the overall discussion of access to healthcare in rural areas. Optimally, barriers to healthcare access should continue to be explored through qualitative and mixed study designs to honor its multi-dimensional stature.

Strengths and Limitations

It is important to note first that this study interviewed healthcare providers instead of patients, which served as both a strength and limitation. Healthcare providers were able to draw on numerous patient-provider experiences, enabling an account of the aggregate which would have been impossible for a patient population. However, accounts of healthcare providers’ perceptions of barriers to healthcare access for their patients may differ from patients’ specific views. Future research should examine acceptability- and appropriateness-related barriers to healthcare access in patient populations. Second, study participants were recruited through convenience sampling methods, so results may be biased towards healthcare providers who are more invested in addressing barriers to healthcare access. Particularly, the providers interviewed for this study represented a subset who go beyond expectations of their job descriptions by engaging with their communities and spending additional uncompensated time with their patients. It is likely that a provider who exhibits these behavioral traits is more likely to participate in research aimed at addressing barriers to healthcare access. Third, the inability to conduct face-to-face interviews for our qualitative study may have posed an additional limitation. It is possible, for example, that in-person interviews might have resulted in increased rapport with study participants. Notwithstanding this possibility, the remote interview format was necessary to accommodate health risks to the ongoing COVID-19 pandemic. Ultimately, given our qualitative approach, results from our study cannot be generalizable to all rural providers’ views or other rural health systems. In addition, no causality can be inferred regarding the influence of aspects of rurality on access. The purpose of this exploratory qualitative study was to probe research questions for future efforts. We also acknowledge the authors’ roles in the research, also known as reflexivity. The first author was the only author who administered interviews and had no prior relationships with all but one study participant. Assumptions and pre-dispositions to interview content by the first author were regularly addressed throughout data analysis to maintain study integrity. This was achieved by conducting analysis by unique interview question, rather than by unique participant, and recoding the numerical order of participants for each question. Our commitment to rigorous qualitative methods was a strength for the study for multiple reasons. Conducting member checks with participants ensured trustworthiness of findings. Continuing data collection to data saturation ensured dependability of findings, which was achieved after 10 interviews and confirmed after 2 additional interviews. We further recognize the heterogeneity in our sample of participants, which helped generate variability in responses. To remain consistent with appropriate means of presenting results in qualitative research however, we shared minimal demographic information about our study participants to ensure confidentiality.

The divide between urban and rural health stretches beyond a disproportionate allocation of resources. Rural health systems serve a more complicated and hard-to-reach patient population. They lack sufficient numbers of providers to meet population health needs. These disparities impact collaboration between patients and providers as well as the delivery of acceptable and appropriate healthcare. The marker of rurality complicates the already cumbersome challenge of administering acceptable and appropriate healthcare and impediments stemming from rurality require continued monitoring to improve patient experiences and outcomes. Our qualitative study explored rural healthcare providers’ views on some of the social, cultural, and programmatic factors that influence access to healthcare among their patient populations. We identified five key themes: 1) a friction exists between aspects of patients’ rural identities and healthcare systems; 2) facilitating access to healthcare requires application of and respect for cultural differences; 3) communication between healthcare providers is systematically fragmented; 4) time and resource constraints disproportionately harm rural health systems; and 5) profits are prioritized over addressing barriers to healthcare access in the US. This study provides implications that may shift the landscape of a healthcare provider’s approach to delivering healthcare. Further exploration is required to understand the effects these characteristics have on measurable patient-centered outcomes in rural areas.

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to individual privacy could be compromised but are available from the corresponding author on reasonable request.

Ethics approval and consent to participate.

All study procedures and methods were carried out in accordance with relevant guidelines and regulations from the World Medical Association Declaration of Helsinki. Ethics approval was given by exempt review from the Institutional Review Board (IRB) at the University of Montana (IRB Protocol No.: 186–20). Participants received oral and written information about the study prior to interview, which allowed them to provide informed consent for the interviews to be recorded and used for qualitative research purposes. No ethical concerns were experienced in this study pertaining to human subjects.

Consent for publication.

The participants consented to the publication of de-identified material from the interviews.

Riley WJ. Health Disparities: Gaps in Access, Quality and Affordability of Medical Care. Trans Am Clin Climatol Assoc. 2012;123:167–74.

PubMed   PubMed Central   Google Scholar  

Levesque J, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12:18. https://doi.org/10.1186/1475-9276-12-18 .

Article   PubMed   PubMed Central   Google Scholar  

Serban N. A Multidimensional Framework for Measuring Access. In: Serban N. Healthcare System Access: Measurement, Inference, and Intervention. New Jersey: John Wiley & Sons; 2019. p. 13–59.

Google Scholar  

Roncarolo F, Boivin A, Denis JL, et al. What do we know about the needs and challenges of health systems? A scoping review of the international literature. BMC Health Serv Res. 2017;17:636. https://doi.org/10.1186/s12913-017-2585-5 .

Cabrera-Barona P, Blaschke T. Kienberger S. Explaining Accessibility and Satisfaction Related to Healthcare: A Mixed-Methods Approach. Soc Indic Res. 2017;133,719–739. https://doi.org/10.1007/s11205-016-1371-9 .

Coombs NC, Meriwether WE, Caringi J, Newcomer SR. Barriers to healthcare access among U.S. adults with mental health challenges: A population-based study. SSM Popul Health. 2021;15:100847. https://doi.org/10.1016/j.ssmph.2021.100847 .

Farietta TP, Lu B, Tumin R. Ohio’s Medicaid Expansion and Unmet Health Needs Among Low-Income Women of Reproductive Age. Matern Child Health. 2018;22(12):1771–9. https://doi.org/10.1007/s10995-018-2575-1 .

Article   Google Scholar  

Sommers BD, Blendon RJ, Orav EJ, Epstein AM. Changes in Utilization and Health Among Low-Income Adults After Medicaid Expansion or Expanded Private Insurance. JAMA Intern Med. 2016;1;176(10):1501–1509. https://doi.org/10.1001/jamainternmed.2016.4419 .

National Alliance on Mental Illness: The Doctor is Out. Continuing Disparities in Access to Mental and Physical Health Care. 2017. https://www.nami.org/Support-Education/Publications-Reports/Public-Policy-Reports/The-Doctor-is-Out . Accessed 29 Aug 2021.

Pollitz K, Lopes L, Kearney A, Rae M, Cox C, Fehr F, Rousseau D, Kaiser Family Foundation. US Statistics on Surprise Medical Billing. JAMA. 2020;323(6):498. https://doi.org/10.1001/jama.2020.0065 .

Kahraman C, Orobello C, Cirella GT. hanging Dynamics with COVID-19: Future Outlook. In: XX Cirella GT, editor. Human Settlements: Urbanization, Smart Sector Development, and Future Outlook. Singapore: Springer; 2022. p. 235–52.

Book   Google Scholar  

Blumenthal D, Fowler EJ, Abrams M, Collins SR. Covid-19 — Implications for the Health Care System. N Engl J Med. 2020;383(15):1483–8. https://doi.org/10.1056/NEJMsb2021088 .

Article   CAS   PubMed   Google Scholar  

Defêche J, Azarzar S, Mesdagh A, Dellot P, Tytgat A, Bureau F, Gillet L, Belhadj Y, Bontems S, Hayette M-P, Schils R, Rahmouni S, Ernst M, Moutschen M, Darcis G. In-Depth Longitudinal Comparison of Clinical Specimens to Detect SARS-CoV-2. Pathogens. 2021;10(11):1362. https://doi.org/10.3390/pathogens10111362 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Rosenblatt RA, Hart LG. Physicians and rural America. West J Med. 2000;173(5):348–51. https://doi.org/10.1136/ewjm.173.5.348 .

Kaiser Family Foundation Analysis of OECD Data. 2020. https://www.healthsystemtracker.org/chart-collection/u-s-health-care-resources-compare-countries/#item-physicians-density-per-1000-population-2000-2018 . Accessed 31 Oct 2021.

Government Accounting Office. Physician Workforce: Locations and Types of Graduate Training Were Largely Unchanged, and Federal Efforts May Not Be Sufficient to Meet Needs. 2017. https://www.gao.gov/assets/gao-17-411.pdf . Accessed 31 Oct 2021.

The Kaiser Family Foundation: The Uninsured in Rural America. 2003. https://www.kff.org/wp-content/uploads/2013/01/the-uninsured-in-rural-america-update-pdf.pdf . Accessed 15 Sept 2021.

Wright B, Potter AJ, Trivedi AN, Mueller KJ. The Relationship Between Rural Health Clinic Use and Potentially Preventable Hospitalizations and Emergency Department Visits Among Medicare Beneficiaries. J Rural Health. 2018;34(4):423–30. https://doi.org/10.1111/jrh.12253 .

Article   PubMed   Google Scholar  

Weichelt B, Bendixsen C, Patrick T. A Model for Assessing Necessary Conditions for Rural Health Care’s Mobile Health Readiness: Qualitative Assessment of Clinician-Perceived Barriers. JMIR Mhealth Uhealth. 2019;7(11): e11915. https://doi.org/10.2196/11915 .

Mangundu M, Roets L, Janse van Rensberg E. Accessibility of healthcare in rural Zimbabwe: The perspective of nurses and healthcare users. Afr J Prim Health Care Fam Med. 2020;12(1):e1-e7. https://doi.org/10.4102/phcfm.v12i1.2245 .

Rahayu YYS, Araki T, Rosleine D. Factors affecting the use of herbal medicines in the universal health coverage system in Indonesia. J Ethnopharmacol. 2020;260: 112974. https://doi.org/10.1016/j.jep.2020.112974 .

Bolin JN, Bellamy GR, Ferdinand AO, et al. Rural Healthy People 2020: New Decade, Same Challenges. Journal of Rural Health. 2015;31(3):326–33.

Reid S. The rural determinants of health: using critical realism as a theoretical framework. Rural Remote Health. 2019;19(3):5184. https://doi.org/10.22605/RRH5184 .

Wynia MK, Osborn CY. Health literacy and communication quality in health care organizations. J Health Commun. 2010;15 Suppl 2(Suppl 2):102–115. https://doi.org/10.1080/10810730.2010.499981 .

Centers for Disease Control and Prevention. What is Health Literacy? 2022. https://www.cdc.gov/healthliteracy/learn/index.html . Accessed 25 Feb 2022.

Davis TC, Arnold CL, Rademaker A, et al. Differences in barriers to mammography between rural and urban women. J Womens Health (Larchmt). 2012;21(7):748–55. https://doi.org/10.1089/jwh.2011.3397 .

Halverson J, Martinez-Donate A, Trentham-Dietz A, et al. Health literacy and urbanicity among cancer patients. J Rural Health. 2013;29(4):392–402. https://doi.org/10.1111/jrh.12018 .

Zahnd WE, Scaife SL, Francis ML. Health literacy skills in rural and urban populations. Am J Health Behav. 2009;33(5):550–7. https://doi.org/10.5993/ajhb.33.5.8 .

Dogba MJ, Dossa AR, Breton E, Gandonou-Migan R. Using information and communication technologies to involve patients and the public in health education in rural and remote areas: a scoping review. BMC Health Serv Res. 2019;19(1):128. https://doi.org/10.1186/s12913-019-3906-7 .

Committee on the Science of Changing Behavioral Health Social Norms, Board on Behavioral, Cognitive, and Sensory Sciences, Division of Behavioral and Social Sciences and Education; National Academies of Sciences, Engineering, and Medicine. In: Ending Discrimination Against People with Mental and Substance Use Disorders: The Evidence for Stigma Change. Washington: National Academics Press; 2016. p. 33–52.

Wu Y, Zhou H, Wang Q, Cao M, Medina A, Rozelle S. Use of maternal health services among women in the ethnic rural areas of western China. BMC Health Serv Res. 2019;19(1):179. https://doi.org/10.1186/s12913-019-3996-2 .

Meyer E, Hennink M, Rochat R, et al. Working Towards Safe Motherhood: Delays and Barriers to Prenatal Care for Women in Rural and Peri-Urban Areas of Georgia. Matern Child Health J. 2016;20(7):1358–65. https://doi.org/10.1007/s10995-016-1997-x .

Heinrich S. Medical science faces the post-truth era: a plea for the grassroot values of science. Curr Opin Anaesthesiol. 2020;33(2):198–202. https://doi.org/10.1097/ACO.0000000000000833 .

Esquivel MM, Chen JC, Woo RK, et al. Why do patients receive care from a short-term medical mission? Survey study from rural Guatemala. J Surg Res. 2017;215:160–6. https://doi.org/10.1016/j.jss.2017.03.056 .

Park LG, Dracup K, Whooley MA, et al. Symptom Diary Use and Improved Survival for Patients With Heart Failure [published correction appears in Circ Heart Fail. 2017 Dec;10(12):]. Circ Heart Fail. 2017;10(11):e003874. https://doi.org/10.1161/CIRCHEARTFAILURE.117.003874 .

Taleb F, Perkins J, Ali NA, et al. Transforming maternal and newborn health social norms and practices to increase utilization of health services in rural Bangladesh: a qualitative review. BMC Pregnancy Childbirth. 2015;15:75. https://doi.org/10.1186/s12884-015-0501-8 .

Billah SM, Hoque DE, Rahman M, et al. Feasibility of engaging “Village Doctors” in the Community-based Integrated Management of Childhood Illness (C-IMCI): experience from rural Bangladesh. J Glob Health. 2018;8(2): 020413. https://doi.org/10.7189/jogh.08.020413 .

Kaiser JL, Fong RM, Hamer DH, et al. How a woman’s interpersonal relationships can delay care-seeking and access during the maternity period in rural Zambia: An intersection of the Social Ecological Model with the Three Delays Framework. Soc Sci Med. 2019;220:312–21. https://doi.org/10.1016/j.socscimed.2018.11.011 .

Rao KD, Sheffel A. Quality of clinical care and bypassing of primary health centers in India. Soc Sci Med. 2018;207:80–8. https://doi.org/10.1016/j.socscimed.2018.04.040 .

Lee YT, Lee YH, Kaplan WA. Is Taiwan’s National Health Insurance a perfect system? Problems related to health care utilization of the aboriginal population in rural townships. Int J Health Plann Manage. 2019;34(1):e6–10. https://doi.org/10.1002/hpm.2653 .

Lyford M, Haigh MM, Baxi S, Cheetham S, Shahid S, Thompson SC. An Exploration of Underrepresentation of Aboriginal Cancer Patients Attending a Regional Radiotherapy Service in Western Australia. Int J Environ Res Public Health. 2018;15(2):337. https://doi.org/10.3390/ijerph15020337 .

Article   PubMed Central   Google Scholar  

Rohr JM, Spears KL, Geske J, Khandalavala B, Lacey MJ. Utilization of Health Care Resources by the Amish of a Rural County in Nebraska. J Community Health. 2019;44(6):1090–7. https://doi.org/10.1007/s10900-019-00696-9 .

Johnston K, Harvey C, Matich P, et al. Increasing access to sexual health care for rural and regional young people: Similarities and differences in the views of young people and service providers. Aust J Rural Health. 2015;23(5):257–64. https://doi.org/10.1111/ajr.12186 .

Legido-Quigley H, Naheed A, de Silva HA, et al. Patients’ experiences on accessing health care services for management of hypertension in rural Bangladesh, Pakistan and Sri Lanka: A qualitative study. PLoS ONE. 2019;14(1): e0211100. https://doi.org/10.1371/journal.pone.0211100 .

Shaw B, Amouzou A, Miller NP, Bryce J, Surkan PJ. A qualitative exploration of care-seeking pathways for sick children in the rural Oromia region of Ethiopia. BMC Health Serv Res. 2017;17(1):184. https://doi.org/10.1186/s12913-017-2123-5 .

Larson E, Vail D, Mbaruku GM, Kimweri A, Freedman LP, Kruk ME. Moving Toward Patient-Centered Care in Africa: A Discrete Choice Experiment of Preferences for Delivery Care among 3,003 Tanzanian Women. PLoS ONE. 2015;10(8): e0135621. https://doi.org/10.1371/journal.pone.0135621 .

Spleen AM, Lengerich EJ, Camacho FT, Vanderpool RC. Health care avoidance among rural populations: results from a nationally representative survey. J Rural Health. 2014;30(1):79–88. https://doi.org/10.1111/jrh.12032 .

Weisgrau S. Issues in rural health: access, hospitals, and reform. Health Care Financ Rev. 1995;17(1):1–14.

CAS   PubMed   PubMed Central   Google Scholar  

National Center for Health Statistics. 2018. https://www.cdc.gov/nchs/surveys.htm . Accessed 29 Aug 2021.

Sekhon M, Cartwright M, Francis JJ. Acceptability of healthcare interventions: an overview of reviews and development of a theoretical framework. BMC Health Serv Res. 2017;17(1):88. https://doi.org/10.1186/s12913-017-2031-8 .

Dyer TA, Owens J, Robinson PG. The acceptability of healthcare: from satisfaction to trust. Community Dent Health. 2016;33(4):242–51. https://doi.org/10.1922/CDH_3902Dyer10 .

Padgett DK. Qualitative and Mixed Methods in Public Health. Thousand Oaks, California: SAGE Publications Inc.; 2012.

Tolley EE, Ulin PR, Mack N, Robinson ET, Succop SM. Qualitative Methods in Public Health: A Field Guide for Applied Research. 2nd ed. San Francisco, California: John Wiley & Sons, Inc.; 2016.

Ingram DD, Franco SJ. 2013 NCHS urban-rural classification scheme for counties. In: National Center for Health Statistics: Vital Health Statistics. 2014. https://www.cdc.gov/nchs/data/series/sr_02/sr02_166.pdf . Accessed 31 Oct 2021.

Health Resources & Services Administration. Health Professional Shortage Area Find. 2021. https://data.hrsa.gov/tools/shortage-area/hpsa-find . Accessed 31 Oct 2021.

Shaghaghi A, Bhopal RS, Sheikh A. Approaches to Recruiting “Hard-To-Reach” Populations into Re-search: A Review of the Literature. Health Promot Perspect. 2011;1(2):86–94. https://doi.org/10.5681/hpp.2011.009 .

Sadler GR, Lee HC, Lim RS, Fullerton J. Recruitment of hard-to-reach population subgroups via adaptations of the snowball sampling strategy. Nurs Health Sci. 2010;12(3):369–74. https://doi.org/10.1111/j.1442-2018.2010.00541.x .

Deterding NM, Waters MC. Flexible Coding of In-depth Interviews: A Twenty-first-century Approach. Sociological Methods & Research. 2021;50(2):708–39. https://doi.org/10.1177/0049124118799377 .

Schreier M, Stamann C, Janssen M, Dahl T, Whittal A. Qualitative Content Analysis: Conceptualizations and Challenges in Research Practice-Introduction to the FQS Special Issue" Qualitative Content Analysis I". InForum Qualitative Sozialforschung/Forum: Qualitative Social Research. 2019;20:26 DEU.

Guest G, Namey E, Chen M. A simple method to assess and report thematic saturation in qualitative research. PLoS ONE. 2020;15(5): e0232076. https://doi.org/10.1371/journal.pone.0232076 .

Mayring P. Qualitative Content Analysis. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research. 2000;1(2). https://doi.org/10.17169/fqs-1.2.1089 .

O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Academic Medicine, Vol. 89, No. 9 / Sept 2014. https://doi.org/10.1097/ACM.0000000000000388 .

Carter N, Bryant-Lukosius D, DiCenso A, Blythe J, Neville AJ. The use of triangulation in qualitative research. Oncol Nurs Forum. 2014;41(5):545–7. https://doi.org/10.1188/14.ONF.545-547 .

Miller S. Cultural humility is the first step to becoming global care providers. J Obstet Gynecol Neonatal Nurs. 2009;38(1):92–3. https://doi.org/10.1111/j.1552-6909.2008.00311.x .

Prasad SJ, Nair P, Gadhvi K, Barai I, Danish HS, Philip AB. Cultural humility: treating the patient, not the illness. Med Educ Online. 2016;21:30908. https://doi.org/10.3402/meo.v21.30908 .

George MS, Davey R, Mohanty I, Upton P. “Everything is provided free, but they are still hesitant to access healthcare services”: why does the indigenous community in Attapadi, Kerala continue to experience poor access to healthcare? Int J Equity Health. 2020;19(1):105. https://doi.org/10.1186/s12939-020-01216-1 .

Romanelli M, Hudson KD. Individual and systemic barriers to health care: Perspectives of lesbian, gay, bisexual, and transgender adults. Am J Orthopsychiatry. 2017;87(6):714–28. https://doi.org/10.1037/ort0000306 .

Bailie J, Schierhout G, Laycock A, et al. Determinants of access to chronic illness care: a mixed-methods evaluation of a national multifaceted chronic disease package for Indigenous Australians. BMJ Open. 2015;5(11): e008103. https://doi.org/10.1136/bmjopen-2015-008103 .

Reeve C, Humphreys J, Wakerman J, Carter M, Carroll V, Reeve D. Strengthening primary health care: achieving health gains in a remote region of Australia. Med J Aust. 2015;202(9):483–7. https://doi.org/10.5694/mja14.00894 .

Swan LET, Auerbach SL, Ely GE, Agbemenu K, Mencia J, Araf NR. Family Planning Practices in Appalachia: Focus Group Perspectives on Service Needs in the Context of Regional Substance Abuse. Int J Environ Res Public Health. 2020;17(4):1198. https://doi.org/10.3390/ijerph17041198 .

Kabia E, Mbau R, Oyando R, et al. “We are called the et cetera”: experiences of the poor with health financing reforms that target them in Kenya. Int J Equity Health. 2019;18(1):98. https://doi.org/10.1186/s12939-019-1006-2 .

Ho JW, Kuluski K, Im J. “It’s a fight to get anything you need” - Accessing care in the community from the perspectives of people with multimorbidity. Health Expect. 2017;20(6):1311–9. https://doi.org/10.1111/hex.12571 .

Latif A, Mandane B, Ali A, Ghumra S, Gulzar N. A Qualitative Exploration to Understand Access to Pharmacy Medication Reviews: Views from Marginalized Patient Groups. Pharmacy (Basel). 2020;8(2):73. https://doi.org/10.3390/pharmacy8020073 .

Tschirhart N, Diaz E, Ottersen T. Accessing public healthcare in Oslo, Norway: the experiences of Thai immigrant masseuses. BMC Health Serv Res. 2019;19(1):722. https://doi.org/10.1186/s12913-019-4560-9 .

Ireland S, Belton S, Doran F. “I didn’t feel judged”: exploring women’s access to telemedicine abortion in rural Australia. J Prim Health Care. 2020;12(1):49–56. https://doi.org/10.1071/HC19050 .

Stokes T, Tumilty E, Latu ATF, et al. Improving access to health care for people with severe chronic obstructive pulmonary disease (COPD) in Southern New Zealand: qualitative study of the views of health professional stakeholders and patients. BMJ Open. 2019;9(11): e033524. https://doi.org/10.1136/bmjopen-2019-033524 .

Jafar TH, Ramakrishnan C, John O, et al. Access to CKD Care in Rural Communities of India: a qualitative study exploring the barriers and potential facilitators. BMC Nephrol. 2020;21(1):26. https://doi.org/10.1186/s12882-020-1702-6 .

Doetsch J, Pilot E, Santana P, Krafft T. Potential barriers in healthcare access of the elderly population influenced by the economic crisis and the troika agreement: a qualitative case study in Lisbon, Portugal. Int J Equity Health. 2017;16(1):184. https://doi.org/10.1186/s12939-017-0679-7 .

Engel GL. The need for a new medical model: a challenge for biomedicine. Science. 1977;196(4286):129–36. https://doi.org/10.1126/science.847460 .

Risberg G, Hamberg K, Johansson E.E. Gender perspective in medicine: a vital part of medical scientific rationality. A useful model for comprehending structures and hierarchies within medical science. BMC Med. 2006;4(1):1.

Montana Census & Economic Information Center. 2021. https://ceic.mt.gov/ . Accessed 18 Sept 2021.

Smith M, Saunders R, Stuckhardt L, McGinnis JM, Committee on the Learning Health Care System in America, Institute of Medicine. Best Care at Lower Cost: The Path to Continuously Learning Health Care in America. Washington: National Academies Press; 2013.

O’Daniel M, Rosenstein AH, Professional Communication and Team Collaboration. In: Hughes RG, editor. Chapter 33: Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Agency for Healthcare Research and Quality: Rockville; 2008.

Evans RS. Electronic Health Records: Then, Now, and in the Future. Yearb Med Inform. 2016;Suppl 1(Suppl 1):S48-S61. https://doi.org/10.15265/IYS-2016-s006 .

Tikkanen R, Osborn R, Mossialos E, Djordjevic A, Wharton GA. International Health Care System Profiles: United States. The Commonwealth Fund. 2020. https://www.commonwealthfund.org/international-health-policy-center/countries/united-states . Accessed 19 Sept 2021.

Berchick ER, Barnett JC, Upton RD. Health Insurance Coverage in the United States. Washington: United States Census Bureau; 2018.

Brock DW, Buchanan A. Ethical Issues in For-Profit Health Care. In: Gray BH, editor. For-Profit Enterprise in Health Care. Washington: National Academics Press; 1986.

Lekas HM, Pahl K, Fuller Lewis C. Rethinking Cultural Competence: Shifting to Cultural Humility. Health Serv Insights. 2020;13:1178632920970580. https://doi.org/10.1177/1178632920970580 .

Beaulieu MD. Primary and secondary care: Breaking down barriers for our patients with chronic diseases. Can Fam Physician. 2013;59(2):221.

Crafford L, Jenkins LS. Why seek a second consultation at an emergency centre? A qualitative study. Afr J Prim Health Care Fam Med. 2017;9(1):e1–8. https://doi.org/10.4102/phcfm.v9i1.1397 .

Sorensen MJ, von Recklinghausen FM, Fulton G, et al. Secondary overtriage: The burden of unnecessary interfacility transfers in a rural trauma system. JAMA Surg. 2013;148:763–8.

Sutcliffe CG, Thuma PE, van Dijk JH, et al. Use of mobile phones and text messaging to decrease the turnaround time for early infant HIV diagnosis and notification in rural Zambia: an observational study. BMC Pediatr. 2017;17(1):66. https://doi.org/10.1186/s12887-017-0822-z .

Baldwin LM, Morrison C, Griffin J, et al. Bidirectional Text Messaging to Improve Adherence to Recommended Lipid Testing. J Am Board Fam Med. 2017;30(5):608–14. https://doi.org/10.3122/jabfm.2017.05.170088 .

Albright K, Krantz MJ, Backlund Jarquín P, DeAlleaume L, Coronel-Mockler S, Estacio RO. Health Promotion Text Messaging Preferences and Acceptability Among the Medically Underserved. Health Promot Pract. 2015;16(4):523–32. https://doi.org/10.1177/1524839914566850 .

Cramer ME, Mollard EK, Ford AL, Kupzyk KA, Wilson FA. The feasibility and promise of mobile technology with community health worker reinforcement to reduce rural preterm birth. Public Health Nurs. 2018;35(6):508–16. https://doi.org/10.1111/phn.12543 .

Gbadamosi SO, Eze C, Olawepo JO, et al. A Patient-Held Smartcard With a Unique Identifier and an mHealth Platform to Improve the Availability of Prenatal Test Results in Rural Nigeria: Demonstration Study. J Med Internet Res. 2018;20(1): e18. https://doi.org/10.2196/jmir.8716 .

Trondsen MV, Tjora A, Broom A, Scambler G. The symbolic affordances of a video-mediated gaze in emergency psychiatry. Soc Sci Med. 2018;197:87–94. https://doi.org/10.1016/j.socscimed.2017.11.056 .

Schwitters A, Lederer P, Zilversmit L, et al. Barriers to health care in rural Mozambique: a rapid ethnographic assessment of planned mobile health clinics for ART. Glob Health Sci Pract. 2015;3(1):109–16. https://doi.org/10.9745/GHSP-D-14-00145 .

Kojima N, Krupp K, Ravi K, et al. Implementing and sustaining a mobile medical clinic for prenatal care and sexually transmitted infection prevention in rural Mysore, India. BMC Infect Dis. 2017;17(1):189. https://doi.org/10.1186/s12879-017-2282-3 .

Gorman SE, Martinez JM, Olson J. An assessment of HIV treatment outcomes among utilizers of semi-mobile clinics in rural Kenya. AIDS Care. 2015;27(5):665–8. https://doi.org/10.1080/09540121.2014.986053 .

Lee S, Black D, Held ML. Factors Associated with Telehealth Service Utilization among Rural Populations. J Health Care Poor Underserved. 2019;30(4):1259–72. https://doi.org/10.1353/hpu.2019.0104 .

Agha Z, Schapira RM, Maker AH. Cost effectiveness of telemedicine for the delivery of outpatient pulmonary care to a rural population. Telemed J E Health. 2002;8(3):281–91. https://doi.org/10.1089/15305620260353171 .

Doraiswamy S, Abraham A, Mamtani R, Cheema S. Use of Telehealth During the COVID-19 Pandemic: Scoping Review. J Med Internet Res. 2020;22(12): e24087. https://doi.org/10.2196/24087 .

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Acknowledgements

This research was supported by the Center for Biomedical Research Excellence award (P20GM130418) from the National Institute of General Medical Sciences of the National Institute of Health. The first author was also supported by the University of Montana Burnham Population Health Fellowship. We would like to thank Dr. Christopher Dietrich, Dr. Jennifer Robohm and Dr. Eric Arzubi for their contributions on determining inclusion criteria for the healthcare provider population used for this study.

 This research did not receive any specific grant from funding agencies in the public, commercial, and not-for-profit sectors. 

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The authors confirm contribution to the paper as follows: study conception and design: NC and JC; data collection: NC; analysis and interpretation of results: NC and JC; draft manuscript preparation: NC, DC and JC; and manuscript editing: NC, DC and JC. All authors reviewed the results and approved the final version of the manuscript.

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Coombs, N.C., Campbell, D.G. & Caringi, J. A qualitative study of rural healthcare providers’ views of social, cultural, and programmatic barriers to healthcare access. BMC Health Serv Res 22 , 438 (2022). https://doi.org/10.1186/s12913-022-07829-2

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• Volume 14, Issue 4
• Collaborative design of a health research training programme for nurses and midwives in Tshwane district, South Africa: a study protocol
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• http://orcid.org/0000-0002-8761-2055 Rodwell Gundo ,
• Mavis Fhumulani Mulaudzi
• Department of Nursing Science , University of Pretoria , Pretoria , South Africa
• Correspondence to Dr Rodwell Gundo; rodwell.gundo{at}up.ac.za

Introduction Nurses are essential for implementing evidence-based practices to improve patient outcomes. Unfortunately, nurses lack knowledge about research and do not always understand research terminology. This study aims to develop an in-service training programme for health research for nurses and midwives in the Tshwane district of South Africa.

Methods and analysis This protocol outlines a codesign study guided by the five stages of design thinking proposed by the Hasso-Plattner Institute of Design at Stanford University. The participants will include nurses and midwives at two hospitals in the Tshwane district, Gauteng Province. The five stages will be implemented in three phases: Phase 1: Stage 1—empathise and Stage 2—define. Exploratory sequential mixed methods including focus group discussions with nurses and midwives (n=40), face-to-face interviews (n=6), and surveys (n=330), will be used in this phase. Phase 2: Stage 3—ideate and Stage 4—prototype. A team of research experts (n=5), nurses and midwives (n=20) will develop the training programme based on the identified learning needs. Phase 3: Stage 5—test. The programme will be delivered to clinical nurses and midwives (n=41). The training programme will be evaluated through pretraining and post-training surveys and face-to-face interviews (n=4) following training. SPSS V.29 will be used for quantitative analysis, and content analysis will be used to analyse qualitative data.

Ethics and dissemination The protocol was approved by the Faculty of Health Sciences Research Ethics Committee of the University of Pretoria (reference number 123/2023). The protocol is also registered with the National Health Research Database in South Africa (reference number GP_202305_032). The study findings will be disseminated through conference presentations and publications in peer-reviewed journals.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

This study will be strengthened through the use of quantitative and qualitative methods to understand the research problem.

The inclusion of two hospitals and the participation of different nurses and midwives will ensure the credibility of the findings.

Local research experts, nurses and midwives will collaborate to develop a training programme appropriate to the context of the setting.

The findings will be limited to two hospitals; therefore, the findings may not be generalisable to other hospitals.

Introduction

Evidence-based practice (EBP) has gained prominence in health services internationally over the past three decades. 1 EBP integrates individual clinical expertise with clinical evidence generated from systematic research. 2 EBP aims to deliver appropriate, efficient patient care. 3 Consequently, generating evidence that informs care delivery has become increasingly important for improving patient-centred care, patient safety, patient outcomes and the healthcare system. 1 3 In healthcare, nurses are well positioned to implement EBP because they constitute the largest proportion of the health workforce. 1 4 Nurses thus have to be proactive in acquiring, synthesising and using research knowledge and the best evidence to inform their practice and decision-making. 3 4

Recognising the need for EBP, many nursing organisations worldwide have developed best practice guidelines for patient-care decision-making. 4 In South Africa, the roadmap for strengthening nursing and midwifery acknowledges that nurses are vital for providing safe and effective patient care. Strategically, investing in nurse-led research will help develop nurse-led models of care. 5 Similarly, the South African Nursing Council expects nurses to actively participate in research activities, including academic writing, reading and reviewing, as part of continuing professional development. 6 Training nurses and midwives can enhance their research capacity and enable them to use available resources for research, ultimately leading to changes in EBP in clinical settings.

Nurses need to gain research knowledge and become comfortable with research terminology. 7 8 Although undergraduate nursing training includes a research component, this training does not always translate into a strong understanding of research. 7 As such, there needs to be more nurse-led patient-centred research. A recent review of nursing research from 2000 to 2019 showed that most nursing research is conducted by nurses working at higher education institutions. Research output and collaboration are also disproportionately more prominent in high-income countries across North America, Europe, and Oceania than in low-income and middle-income countries. 9 The other challenges that affect health research include limited time, lack of research facilities, research culture, mentors, access to mentors, and workforce capacity. 10

Little is known about the research literacy of nurses and midwives and research training programmes for practicing nurses and midwives in South Africa. Therefore, we developed a protocol to develop a research training programme for nurses and midwives in the Tshwane district of South Africa. This protocol is guided by the following research questions: (a) what are the levels of nurses’ and midwives’ knowledge, attitudes and involvement in research?; (b) what are the learning needs of nurses and midwives regarding research design and implementation?; (c) what content should be included in a research training programme for nurses and midwives?; (d) how does the developed training programme impact nurses’ knowledge about research?

Theoretical framework

The principles of constructivism learning theory will guide this study. This theory is rooted in the work of Piaget and Vygotsky. 11 This paradigm explains how people might acquire and retain knowledge. 12 Through the lens of constructivism learning theory, adult educators acknowledge learners’ previous experiences, appreciate multiple perspectives and embed learning in social contexts. The instructor is a mentor who helps learners understand new information. Constructivism learning theory has three dimensions, namely, individual constructivism, social constructivism and contextualism. In individual constructivism, learners are self-directed and construct knowledge via personal experience. Social constructivism assumes that learning is socially mediated, and that knowledge is constructed through social interaction. In contextualism, learning should be tied to real-life contexts. 13 Some benefits of constructivism theory are that learners enjoy learning because they are actively engaged and have ownership over what they learn. 12 The theory was considered appropriate because the study will be conducted at two research-intensive hospitals. Therefore, nurses and midwives are familiar with the research process.

Methods and analysis

Research design.

We will use a codesign approach guided by the stages of design thinking proposed by the Hasso-Plattner Institute of Design at Stanford University. 14 15 The design originated from participatory research and involves active engagement of the participants to identify needs and collaboratively propose solutions. 14 16 The approach is considered appropriate because it ensures meaningful involvement of end-users, thereby creating meaningful benefits. 17 A codesign approach ensures fewer challenges when implementing the initiative because stakeholders are fully engaged throughout the process. 14 Underpinned by the African philosophy of Ubuntu, the process will promote the culture of working together and collective solidarity. 18

The study will be guided by the five stages of design thinking: empathise, define, ideate, prototype and test. Empathise aims to understand the deeper issues, needs and challenges needed to solve the problem. Define involves data analysis and prioritising the needs of the end users of the training programme. Ideate includes brainstorming for innovative solutions to address the identified needs. In the prototype stage, the idea or innovation is shown to the end users and other stakeholders. Finally, testing involves checking what works in a real-world setting. 14 15

Study setting

The study will be conducted at two public hospitals in the Tshwane district of Gauteng Province in South Africa. The province has the highest population density, the most hospitals and the greatest number of nurses and midwives. 19 According to a 2016 community survey, Gauteng has a population of 13.4 million people. 20 Tshwane is one of the five districts in the province and the third most populous district, accounting for 24% of the population in the province. 21 There are three district hospitals, namely, Tshwane, Pretoria West, Jubilee and ODI; one regional hospital, Mamelodi; and three tertiary hospitals, namely, Steve Biko Academic Hospital, Dr George Mukhari Hospital and Khalafong Hospital. The two hospitals were selected due to their proximity to the University of Pretoria. One of the hospitals is a tertiary hospital with 800 beds. The second hospital is a 240-bed district hospital linked to the University of Pretoria’s Faculty of Health Sciences. 22

Target population

The population will comprise nurses and midwives working at the two hospitals. In South Africa, there are six categories of nurses and midwives based on qualifications as follows: registered auxiliary nurse (higher certificate), registered general nurse (diploma in nursing), registered midwife (advanced diploma), registered professional nurse and midwife (bachelor’s degree), nurse specialist or midwife specialist (postgraduate diploma), advanced specialist nurse (master’s degree) and those with doctorate degrees. 5 Nurses working at academic hospitals are expected to engage in research activities, including academic writing, reading and reviewing, as part of continuing professional development. 6 A preliminary audit revealed 1900 nurses and midwives working at the two hospitals.

Inclusion and exclusion criteria

Participation will be limited to registered auxiliary nurses, registered general nurses, registered midwives, registered professional nurses and midwives older than 18 years, those registered with the South African Nursing Council, and those with more than 3 months of experience. All people older than 18 years are mandated to give legal consent in South Africa. Nurses with less than 3 months of experience or undergoing orientation will be excluded from the study.

As illustrated in table 1 , the study will be implemented in three phases and five stages to address the four objectives. Stage 1 is currently underway. The collection of the qualitative data started in December 2023 at one of the two hospitals. This will proceed at the second hospital until April 2024. The whole study is expected to be completed by September 2024.

• View inline

Illustration of the research process guided by the stages of design thinking

In this phase, we aim to understand the nurses’ and midwives’ perceived knowledge, attitudes and involvement in research and their learning needs. We will base our investigation on empathising and defining. An exploratory sequential mixed methods design will be used. This design begins with collecting and analysing qualitative data. The qualitative findings are used to develop quantitative measures or instruments to test the identified variables. 23 In this study, the qualitative findings will be used to revise a questionnaire for the subsequent quantitative strand.

Strand 1—qualitative study

Qualitative methods are appropriate for investigating the who, what and where of events or experiences of informants of a poorly understood phenomenon. 24 25

Sample size and sampling

Forty-six participants (n=46) will be selected from nurses and midwives working at the two hospitals. The sample size was pragmatically determined according to the mode of data collection and the volume of data to be collected. However, the final sample size will be determined by data saturation.

We will purposively sample nurses and midwives from the following cadres: registered auxiliary nurses, registered general nurses, registered midwives, and registered professional nurses and midwives. As presented in table 2 , two focus group discussions (FGDs) will be held at each hospital and will involve 10 participants each. Due to power differences that can cause a halo effect among the participants, 26 one FGD will include senior professional nurses and midwives. In contrast, the other FDG will include junior nurses and midwives with either diplomas or certificates. For the individual interviews, three participants (one registered auxiliary nurse, one registered general nurse with a diploma and one professional nurse (with either a bachelor’s or postgraduate qualification)) will be invited to participate. The participants will be expected to share their knowledge of the competencies needed for conducting health research.

Sampling plan for the qualitative strand

Data collection

The study information will be communicated through nursing and midwifery managers. Participation will be voluntary. Nurses and midwives willing to participate will be invited for either FGDs or individual interviews. The participants will be given the details of the study and a consent form. The interviews will be conducted in English in hospitals in private settings at times and places that are most convenient for participants. The participants will be requested to use pseudonyms during interviews. A semistructured interview guide will be used for the interviews (refer to online supplemental file 1 ). The interviews will be audiotaped and later transcribed verbatim in English.

Supplemental material

Data analysis.

The data will be analysed manually using conventional content analysis as described by Hsieh and Shannon. 27 The steps of the analysis will be as follows: (a) repeatedly reading the data to achieve immersion and a sense of the whole; (b) deriving and labelling codes by highlighting the words that capture critical thoughts and concepts; (c) sorting the related codes into categories; (d) organising numerous subcategories into fewer categories; (e) defining each category; and (f) identifying the relationship of the categories in terms of their concurrence, antecedents or consequences. To ensure the reliability of the qualitative coding, tHead2he two researchers will code the first transcript independently. The online Coding Analysis Toolkits 28 will be used to calculate intercoder reliability. The two researchers will discuss differences and agree on the coding before proceeding to the next transcript.

Methodological rigour

Trustworthiness will be achieved through credibility, transferability, dependability and confirmability. 24 29 Credibility will be achieved through spatial and personal triangulation. Spatial triangulation refers to collecting data on the same phenomenon from multiple sites, while personal triangulation refers to collecting data from different types and levels of people. 29 This study will collect data from different cadres of nurses and midwives at two hospitals. Transferability will be enhanced by providing sufficient study details. Dependability and confirmability will be achieved by establishing an audit trail describing the procedures and processes. Additionally, reflexivity will be used to ensure the transparency and quality of the study. 29 30 Reflexivity is where researchers critique, appraise and evaluate the influence of subjectivity and context on the research process. 30 In some branches of qualitative inquiries, researchers use reflexive bracketing to prevent subjective influences. However, Olmos-Vega et al 30 observed that this approach is no longer favoured in modern qualitative research because setting aside certain aspects of subjectivity is problematic. In this study, reflexivity will be ensured by keeping memos and field notes to document interpersonal dynamics and critical decisions made throughout the study.

Strand 2—quantitative study

A cross-sectional survey will be used to assess nurses’ and midwives’ perceived knowledge, attitudes and involvement in research.

The sample size was calculated using Yamane’s formula 31 as follows: n=N/(1+N(e2), where n is the sample, N is the population size, and e is the level of precision. Assuming a 95% CI and the estimated proportion of an attribute p=0.5, the calculated sample size for a population N=1900 with ±5% precision is 330. In this study, a convenience sampling technique will be used to select participants.

The researchers will brief nurse managers about the study. Furthermore, posters inviting nurses and midwives to participate in the study will be placed in each department. The poster will include details of the study and relevant contact details. The nurses and midwives willing to participate will be given an information sheet, consent form and questionnaire. They will be requested to leave the completed questionnaire in a designated box in the unit manager’s office.

Data collection instrument

The data will be collected using the Edmonton Research Orientation Survey (EROS). The EROS was developed in Canada and is a valid and reliable self-reported instrument for measuring perceived knowledge, attitudes and involvement in research. The tool has four subscales with 43 items. The four subscales are the value of research, value of innovation, research involvement and research utilisation (EBP). Valuing research is a positive attitude towards research; the value of innovation refers to being on the leading edge or keeping up to date with information; research involvement relates to active participation in research; and research utilisation (EBP) pertains to whether respondents use research to guide their day-to-day practice. Additionally, there is a category for the barriers and support for research. 32–34

The EROS items are measured using a 5-point Likert scale ranging from 1—strongly disagree to 5—strongly agree. The maximum score is 215. Higher overall scores indicate a stronger research orientation. The scores will be categorised into high (between 143 and 215 points), medium (73–142 points) or low (0–72 points). 32 33 The tool has been extensively used to assess the research orientation of health professionals, including physiotherapists, 35 midwives, 36 occupational therapists, 33 academics 32 and undergraduate students. 34 Previous studies reported high internal reliability with Cronbach’s alpha coefficients of 0.95 37 and 0.92. 34

Although the tool has been previously used among South African occupational therapists, 33 the copyright author observed that the tool had been developed at a time when there was no access to information via the internet, hence the need to find ways of incorporating such issues. This study will use qualitative findings to identify items not included in the tool but relevant to the South African context.

The quantitative data will be entered into Microsoft Excel and imported to IBM SPSS statistics V.29. Descriptive statistics will be used to summarise demographic characteristics and questionnaire scores. Mean scores and SD will be calculated for individual items, subgroup scores and overall scores. Independent sample t-tests, Mann-Whitney U tests, and multiple regression will be used to compare the scores of different groups of nurses and midwives. The assumptions for each test will be assessed before analysis. The level of significance will be set at 0.05.

During this phase, we will develop the training programme based on the learning needs identified in Phase 1. Research experts (n=5) will participate in a one-design studio workshop to brainstorm the content to be included in the training programme. Although there is limited literature on the definition and characteristics of an expert, Bruce et al 38 defined an expert as a person who is knowledgeable or informed in a particular discipline. Bruce et al 38 further observed that maximum variation or heterogeneity in sampling experts yields rich information. This study will select experts based on the criteria proposed by Davis 39 and Rubio et al . 40 The characteristics include clinical experience in the setting, professional certification in a related area, research experience, work experience, conference presentation and publication in the topic area.

A design studio workshop is a process in which participants create, and critique proposed interventions. 16 The researcher will share the findings of Phase 1 and explain the workshop’s goal to the participants. Participants will be provided with pens, sticky notes and flip-chart paper. The researcher will facilitate discussion and capture feedback. At the end of the workshop, the researcher will consolidate the ideas, create a more detailed programme design and communicate with the participants.

Next, we will develop a prototype to be discussed in a consultative meeting and validation meeting. An iterative process will be used to validate the developed training programme. The consultative meeting will be held with research experts (n=5). A validation exercise will also be conducted with nurses and midwives (n=20), the programme’s end-users. The nurses and midwives will be identified in consultation with nurse managers at the two hospitals to avoid disruption of services. During the validation exercise, the participants will be grouped into smaller idea groups to review and discuss the developed programme. Each group will be requested to identify a representative to report on behalf of the group. The feedback from the consultative and validation meeting will help to improve the developed programme.

The purpose of this phase is to assess the impact of the developed training programme. The developed training will be delivered to 41 nurses and midwives in the Tshwane district. The sample is based on similar studies that have implemented interventions for health professionals. For example, a study by Gundo et al 41 used G-Power software 42 to calculate the sample size based on a conservative effect size of d=0.5, a power of 80% and an alpha=0.05. The calculated sample size was 34, but 41 participants were invited to participate in training to allow for a dropout rate of at most 20%. The identification and invitation of the participants will be negotiated with nurse managers at the two hospitals to avoid service disruptions. The selection process will ensure the representation of the different cadres of nurses and midwives. We will invite a team of research experts to facilitate the training. The impact of the training will be assessed by comparing pre-survey and post-survey EROS scores, FGDs with participants, and evaluations at the end of the training. A paired-sample t-test will be used to compare the pretest and post-test scores.

This protocol aims to develop a research training programme for nurses and midwives in the Tshwane district of South Africa. Initially, we will investigate the learning needs of nurses and midwives. The learning needs will inform a training programme to improve research capacity. As observed by Hines et al , 7 implementing a training programme will improve nurses’ research knowledge, critical appraisal ability and research efficacy. Building capacity for health research in Africa will enhance the ownership of research activities that target relevant topics.

Furthermore, findings relevant to local populations will be communicated in a culturally acceptable manner. Research recommendations may also resonate better and have a better uptake among African policymakers than research produced by internationally led teams. 43–45 This research training programme could be used in other hospitals with similar contexts and other categories of healthcare professionals. However, this will require a larger, multicentre validation study. Our findings will be limited to the two hospitals; therefore, the findings may not be generalisable to other hospitals.

Ethics and dissemination

The protocol was approved by the Research Ethics Committee, Faculty of Health Sciences at the University of Pretoria (reference number: 123/2023). The protocol is registered with the National Health Research Database in South Africa (reference number GP_202305_032). The two hospitals also provided permission for the study. Permission to use the EROS was obtained from the copyright authors, Dr Kerrie Pain and Dr Paul Hagler.

The participants will receive an information leaflet and be required to provide written informed consent. The researcher will ensure that the participants’ personal information is anonymised. Participants can give the researcher written permission to share their personal information. During the FGDs and individual interviews in Phase 1, the participants will be asked to use pseudonyms of their choice. In Phases 2 and 3, anonymity will not be possible because the meetings will be in person. However, the participants will be requested to maintain confidentiality. The data will be stored in compliance with the research ethics committee’s guidelines. The findings of the study will be disseminated through conference presentations and publications in peer-reviewed journals. The preparation of this manuscript followed the standards for reporting qualitative research 46 and the guidelines for reporting observational studies. 47

Ethics statements

Patient consent for publication.

Not applicable.

Acknowledgments

The manuscript was written during a writing retreat that was funded by the National Research Foundation through the Ubuntu Community Model of Nursing Project at the University of Pretoria in South Africa. We also thank Dr Cheryl Tosh for editing the manuscript.

• Cassidy CE ,
• Sackett DL ,
• Rosenberg WM ,
• Gray JA , et al
• World Health Organization
• Bassendowski S
• Republic of South Africa
• ↵ South African nursing Council . In : Continuing professional development framework for nurses and midwives in South Africa . Pretoria : South African Nursing Council , 2021 .
• Ramsbotham J ,
• Yanbing S ,
• Chao L , et al
• Dempsey O , et al
• Efgivia MG ,
• Adora Rinanda RY , et al
• Baral KP , et al
• Thabrew H ,
• Fleming T ,
• Hetrick S , et al
• Slattery P ,
• Mulaudzi FM ,
• Anokwuru RA ,
• Mogale R , et al
• Coetzee SK ,
• Ellis SM , et al
• Statistics South Africa
• Mutyambizi C ,
• Pavlova M ,
• Hongoro C , et al
• Abdullah F ,
• Basu D , et al
• Shrestha S ,
• Bradshaw C ,
• Atkinson S ,
• Sefcik JS ,
• O.Nyumba T ,
• Derrick CJ , et al
• Hsieh H-F ,
• MacPhail C ,
• Abler L , et al
• Korstjens I ,
• Olmos-Vega FM ,
• Stalmeijer RE ,
• Varpio L , et al
• Sarmah HK ,
• Hazarika BB ,
• Choudhury G
• Fernandez A ,
• Sadownik L ,
• Lisonkova S , et al
• Peachey AA ,
• Janssen J ,
• Mirfin-Veitch B , et al
• Kuliukas L , et al
• Langley GC ,
• Berg-Weger M ,
• Tebb SS , et al
• Chirwa E , et al
• Cunningham JB ,
• McCrum-Gardner E
• Nyirenda T , et al
• Kasprowicz VO ,
• Chopera D ,
• Waddilove KD , et al
• O’Brien BC ,
• Harris IB ,
• Beckman TJ , et al
• von Elm E ,
• Altman DG ,
• Egger M , et al

Contributors RG and MFM conceptualised the study, developed the proposal, drafted and revised the manuscript.

Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

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

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The value of qualitative methods to public health research, policy and practice

Institute of Mental Health, University of Nottingham Faculty of Medicine and Health Sciences, Triumph Road, Nottingham NG7 2UH, UK

A O’Caithain

The University of Sheffield, Sheffield, UK

Sheffield Hallam University, Sheffield, UK

This article reviews the role and use of qualitative methods in public health research.

‘Signs of quality’ are introduced to help guide potential authors to publish their qualitative research in public health journals. We conclude that high-quality qualitative research offers insights that quantitative research cannot. It is time for all public health journals to recognise the value of qualitative research and increase the amount that they publish.

Introduction

In this article, we briefly review the role and use of qualitative methods in public health research and its significance for research, policy and practice. Historically, public health research has been largely dependent on quantitative research rooted in medical science. Qualitative research approaches, however, are able to provide the ‘lived experience’ perspective of patients, practitioners and the public on any aspect of public health.

To inform this article, we searched the most recent original research articles published in ten of the most widely cited public health journals in the world (generally those with the highest impact factor, including Perspectives in Public Health ). The list of journals can be found in Table 1 .

The methods used in 100 recently published original research articles in 10 public health journals

We examined 100 of the most recently published original research articles (10 from each journal up until May, 2021) to discover how many of these reported qualitative methods. The findings from this quick review can be found in Table 1 below. The review revealed that 85 articles reported quantitative methods, 11 reported mixed-methods, and only 4 reported qualitative methods. In our review, we deliberately did not include one public health journal, Critical Public Health because it specialises in publishing qualitative public health research studies. With only four qualitative research papers out of the most recent 100 public health original research articles published in the top journals, we have decided to publish this article first to encourage qualitative research practices in public health, second to highlight the value of qualitative research, third to briefly identify what makes ‘good qualitative research’ and finally to promote increased submissions of original qualitative research in this and other public health journals.

Reporting Qualitative Health Research

Qualitative research has its origins in Interpretivism. As such, it has been widely used in the social sciences, in contrast to the medical sciences that historically have largely embraced the positivist tradition. Typically, public health research has followed the positivist tradition although qualitative research methodology appears more often in public health journals than top medical journals. For example, a cursory examination of the Lancet indicates that it does not appear to publish any qualitative research and the British Medical Journal ( BMJ ) rarely does so. In 2016, the BMJ published an open letter from 76 senior academics from 11 countries inviting its editors to: ‘ … reconsider their policy of rejecting qualitative research on the grounds of low priority. They challenge the journal to develop a proactive, scholarly, and pluralist approach to research that aligns with its stated mission ’. 1 Included in their support for qualitative research articles in the BMJ , they observe that many of the journal’s top papers have been qualitative studies. This letter has been cited 250 times in the literature, largely supportive of their views. In their reply to the letter, Editors of the BMJ acknowledge that: ‘ … we agree they can be valuable, and recognise that some research questions can only be answered by using qualitative methods ’. 2 In so much as we can tell to date, the BMJ has not changed its practice. Fortunately, published accounts of qualitative research in various other health disciplines flourishes, for example, there are now at least two health journals that are exclusively designed for this purpose ( Qualitative Health Research and International Journal of Qualitative Studies on Health and Well-being ).

The Value of Qualitative Health Research

The following quotation succinctly argues the need for qualitative research methods in public health:

Public health, we believe, needs both epidemiology and qualitative research. Without epidemiology we cannot answer questions about the prevalence of and association between health determinants and outcomes. Without qualitative enquiry, it is difficult to explain how individuals interpret health and illness in their everyday lives, or to understand the complex workings of the social, cultural and institutional systems that are central to our health and wellbeing. 3

In particular, given a situation with complex phenomena involving human experience and behaviour, quantitative research may equally excel in finding out ‘what and when?’, but qualitative research may equally be needed to find out ‘why, how and how come?’. Green and Britten 4 summarise the role of qualitative research in health, and we have adapted their key points to apply to public health:

• Qualitative methods can help bridge the gap between scientific evidence and public health policy and practice by investigating human perceptions and experiences.
• Recognising the limits of quantitative approaches and that different research questions require different kinds of research.
• Qualitative research findings provide rigorous and firsthand accounts of public health educational, promotional and clinical practices in everyday contexts.
• Qualitative research can be used to help inform individual health choices and health promotion initiatives within communities.

Doing High-Quality Qualitative Research

Quality is unlikely to be the only reason that so little qualitative research finds its way into public health journals; even research articles of the highest quality may be met with resistance from reviewers and editors. Nonetheless it is important to attend to quality. Articles using qualitative methods require the same rigour as articles reporting quantitative methods; however, the criteria for assessing rigour are different. When assessing qualitative articles, we need to remember that what is considered rigorous in the social sciences is not necessarily the same as what is considered rigorous in the medical sciences and vice versa. Either way, what is important is that public health journals publish high-quality research studies, whatever methodology is employed. The following quotation is helpful in focusing on the need for rigour in qualitative approaches to healthcare research:

The use of qualitative research in health care enables researchers to answer questions that may not be easily answered by quantitative methods. Moreover, it seeks to understand the phenomenon under study in the context of the culture or the setting in which it has been studied … (however this) … requires researchers in health care who attempt to use it, to have a thorough understanding of its theoretical basis, methodology and evaluation techniques. 5

As quoted above, Al-Busaidi, 5 asserts that qualitative health researchers need an appreciation of theory and methodologies and use of both in all research and evaluation studies. What is most important in any qualitative study is that the research question is clear and the method is appropriate to answer the research question. We can therefore begin to ask critical questions of any qualitative article submitted for publication in public health journals:

• Is the research question clear?
• Is the method appropriate for addressing the research question?
• Is there an explanation as to how and why this method is appropriate?
• What are the theories referred to in this study and how are these applied?
• Are these theories consistent throughout the study?
• Has the sample been critiqued to make readers aware of who is not included and how this might affect findings?
• Is the analysis grounded in the data?
• Does the analysis address questions of the data so that insights are identified that go beyond simply describing what participants have said?
• Are there clearly articulated implications for public health practice?

In addition to these fundamental questions, to help researchers report qualitative research, there are two frameworks that help to maintain standards for the conduct and reporting of the method. The first is COREQ (Consolidated criteria for reporting qualitative research). 6 This is a 32-point checklist of three domains: research team and reflexivity, study design and analysis and findings. The second is Standards for Reporting Qualitative Research (SRQR), 7 which is a 21-point check-list following the same format. Together, these are both useful tools for helping researchers think about what they need to consider when conducting qualitative research and for helping reviewers assess articles using qualitative methods. We are not suggesting that qualitative researchers should use these frameworks as tick-box checklists, although they may be used to enable researchers to think through important elements of qualitative research that may be otherwise overlooked. At the end of this article, we supply weblinks to enable the reader to inspect these two frameworks.

‘Signs of Quality’ for Reporting Qualitative Public Health Research

Rather than leave the reader baffled by frameworks and checklists, we propose a number of ‘signs of quality’ that we would expect to see when reviewing articles submitted to this or any other high-quality public health journal.

The research question is clearly identified and clearly related to public health policy or practice and the chosen method is appropriate for answering that question. A rationale is offered to justify the study and the methods used.

Ethical questions are considered, the study has been conducted and reported in an ethical manner, and ethical approval has been granted from a recognised ethics committee.

How the study was implemented needs to be reported as clearly as possible including: how access to participants was achieved, what questions were asked, and how the analysis was conducted.

The study needs to be both theoretically and practically consistent. For example, if the study claims to be narrative research, did the questions elicit stories and is narrative theory used in analysis?

Collaborative

In recent years, health services in many countries have embraced patient and public involvement and co-production in both research and practice. Such initiatives are designed to draw our attention to service users’ views, needs and desires. This agenda sits very well with qualitative research methodologies.

Contribution

Every research study needs to make a contribution to the body of knowledge concerning the subject under investigation. If there is theoretical and practical consistency throughout the study and it has been competently conducted and analysed, the reader should come away with a sense of learning something new on the topic. This insight should be easy for a reader to take away from each article and the easiest way to do this is to articulate it clearly in the conclusion in the abstract as well as the conclusion in the body of the paper. Conclusions of ‘it’s complex’ or ‘there were five issues affecting this phenomenon’ fail to offer useful insights. They may be a signal of an under-analysed study. It will be much more helpful to readers to state a single key issue that adds to the evidence base and that helps members of the population, policy-makers, or practitioners to understand the phenomenon under study or take action on it.

Examples of Good Qualitative Research from this Journal

In order to exemplify the principles, we espouse in this article, we refer to two recent articles published in Perspectives in Public Health that use qualitative methods. First, Lozano-Sufrategui et al. 8 aimed to ‘… understand the behaviour changes men who attended a weight loss programme engage in during weight maintenance … ’. To achieve this aim, the research team encouraged men on a weight loss programme to keep photo-diaries of themselves and to talk about their progress with the researchers. The research is innovative in its approach and uniquely reports the participants’ thoughts, feelings and behaviours. It highlights the importance of drawing on the diversity of methods that exist beyond face-to-face interviews. The second example is Eley et al. 9 who conducted interviews and focus groups in four countries in order to ‘ … explore school educators’ attitudes, behaviours and knowledge towards food hygiene, safety and education .’ Using this approach, they were able to explore individual and group views on this subject thus identifying not only the need for more educational resources but barriers and opportunities in the process. While reading these articles, it becomes immediately apparent that these studies were able to gain insight into the respective topics that quantitative methods could never achieve. What qualitative research facilitates is the human connection between interviewer and interviewee and in that process, together with the guarantee of confidentiality, people are able to speak in-depth about their experiences and perceptions, from which much can be learned. In these two examples, the qualitative findings give insights into the thoughts and feelings of the participants and enable a greater understanding of how the researchers were able to draw their conclusions from the research.

A review of top public health journals identified that the vast majority of research that is being currently published in high-ranking public health journals use quantitative methods. High-quality qualitative research offers insights that quantitative research cannot. It is time for all public health journals to recognise the value of qualitative research and increase the amount of high-quality qualitative research that they publish.

COREQ link :

http://cdn.elsevier.com/promis_misc/ISSM_COREQ_Checklist.pdf

SRQR link :

https://onlinelibrary.wiley.com/pb-assets/assets/15532712/SRQR_Checklist-1529502683197.pdf

Conflict of Interest: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding: The author(s) received no financial support for the research, authorship and/or publication of this article.

Contributor Information

T Stickley, Institute of Mental Health, University of Nottingham Faculty of Medicine and Health Sciences, Triumph Road, Nottingham NG7 2UH, UK.

A O’Caithain, The University of Sheffield, Sheffield, UK.

C Homer, Sheffield Hallam University, Sheffield, UK.

• Open access
• Published: 03 April 2024

Women’s experiences of attempted suicide in the perinatal period (ASPEN-study) – a qualitative study

• Kaat De Backer   ORCID: orcid.org/0000-0001-5202-2808 1 ,
• Alexandra Pali   ORCID: orcid.org/0009-0009-5817-156X 1 , 2 ,
• Fiona L. Challacombe   ORCID: orcid.org/0000-0002-3316-8155 3 ,
• Rosanna Hildersley   ORCID: orcid.org/0000-0002-1850-6101 3 ,
• Mary Newburn   ORCID: orcid.org/0000-0001-9471-0908 4 ,
• Sergio A. Silverio   ORCID: orcid.org/0000-0001-7177-3471 5 , 6 ,
• Jane Sandall   ORCID: orcid.org/0000-0003-2000-743X 1 ,
• Louise M. Howard   ORCID: orcid.org/0000-0001-9942-744X 3 &
• Abigail Easter   ORCID: orcid.org/0000-0002-4462-6537 1  

BMC Psychiatry volume  24 , Article number:  255 ( 2024 ) Cite this article

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Suicide is a leading cause of maternal death during pregnancy and the year after birth (the perinatal period). While maternal suicide is a relatively rare event with a prevalence of 3.84 per 100,000 live births in the UK [ 1 ], the impact of maternal suicide is profound and long-lasting. Many more women will attempt suicide during the perinatal period, with a worldwide estimated prevalence of 680 per 100,000 in pregnancy and 210 per 100,000 in the year after birth [ 2 ]. Qualitative research into perinatal suicide attempts is crucial to understand the experiences, motives and the circumstances surrounding these events, but this has largely been unexplored.

Our study aimed to explore the experiences of women and birthing people who had a perinatal suicide attempt and to understand the context and contributing factors surrounding their perinatal suicide attempt.

Through iterative feedback from a group of women with lived experience of perinatal mental illness and relevant stakeholders, a qualitative study design was developed. We recruited women and birthing people ( N  = 11) in the UK who self-reported as having undertaken a suicide attempt. Interviews were conducted virtually, recorded and transcribed. Using NVivo software, a critical realist approach to Thematic Analysis was followed, and themes were developed.

Three key themes were identified that contributed to the perinatal suicide attempt. The first theme ‘Trauma and Adversities’ captures the traumatic events and life adversities with which participants started their pregnancy journeys. The second theme, ‘Disillusionment with Motherhood’ brings together a range of sub-themes highlighting various challenges related to pregnancy, birth and motherhood resulting in a decline in women’s mental health. The third theme, ‘Entrapment and Despair’, presents a range of factors that leads to a significant deterioration of women’s mental health, marked by feelings of failure, hopelessness and losing control.

Conclusions

Feelings of entrapment and despair in women who are struggling with motherhood, alongside a background of traumatic events and life adversities may indicate warning signs of a perinatal suicide. Meaningful enquiry around these factors could lead to timely detection, thus improving care and potentially prevent future maternal suicides.

Peer Review reports

Pregnancy, childbirth, and the postnatal period are a positive and empowering experience for many women and birthing people Footnote 1 . Yet it is widely accepted that the perinatal period is also a time of significant stress, with one in four women experiencing mental health difficulties during this time [ 3 ]. Evidence on the impact of perinatal mental ill-health on the mother [ 4 ], her children [ 5 ], the wider family [ 6 ] and society [ 7 ] has grown in the last decade and worldwide, maternal suicide has been identified as a global public health issue [ 8 ]. In European countries with enhanced surveillance systems for maternal mortality maternal suicide has been identified as one of the leading causes of maternal death [ 9 ]. In the UK, the Confidential Enquiries into Maternal Deaths (MBRRACE-UK) have repeatedly highlighted similar findings, leading to the development and expansion of specialist perinatal mental health services in the UK [ 10 ]. Despite this, there has been no sign of a reduction in suicide rates [ 11 , 12 , 13 , 14 ]. The UK Government has therefore identified pregnant women and new mothers for the first time as a priority group in the recent Suicide Prevention Strategy [ 15 ].

While maternal suicide is a relatively rare event with a prevalence of 3.84 per 100,000 live births (95% CI 2.55–5.55) in the UK [ 1 ], many more women will attempt suicide during pregnancy and the year after birth. Worldwide, the pooled prevalence of perinatal suicide attempts has been estimated to be 680 per 100,000 (95% CI 0.10–4.69%) during pregnancy and 210 per 100,000 (95% CI 0.01–3.21%) during the first-year postpartum [ 2 ]. As well as distressing in their own right, perinatal suicide attempts are known to increase the risk of future fatal acts [ 16 ]. Antenatal [ 17 ] and postnatal suicide attempts [ 18 ] are also associated with increased maternal and neonatal morbidity, adverse birth outcomes, and further suicide attempts.

It is important to note that terminology in suicide research has been a contentious issue and a wide range of definitions have been used in various contexts. The US National Center for Injury and Control issued guidance on uniform definitions in the context of self-directed violence’ [ 19 ], which has informed our study definition of ‘suicide attempt’: “a non-fatal, self-directed, potentially injurious behaviour with intent to die as a result of the behaviour. A suicide attempt might not result in injury”. This definition contains three components worth highlighting, i.e. (1) suicidal ideation, (2) suicidal intent and (3) suicidal behaviour. ‘Suicidal ideation’, also known as ‘suicidality’ (i.e. thoughts of engaging in suicide-related behaviour) [ 19 ] is a known risk factor for suicide [ 20 ] but does not necessarily lead to suicidal behaviours (e.g., behaviour that is self-directed and deliberately results in injury or the potential for injury to oneself, with implicit or explicit evidence of suicidal intent’) [ 19 ]. ‘Suicide attempt’ must also be distinguished from ‘near-fatal deliberate self-harm’, which was defined by Douglas et al (2004) as ‘an act of self-harm using a method that would usually lead to death, or self-injury to a “vital” body area, or self-poisoning that requires admission to an intensive care unit or is judged to be potentially lethal [ 21 ]’. This definition does not contain an element of ‘suicidal intent’, ie. explicit or implicit evidence that at the time of injury the individual intended to kill self or wished to die, and that the individual understood the probable consequences of his or her actions [ 19 ].

To date, perinatal suicide research has predominately been based on case note reviews [ 1 ], retrospective cohort studies [ 22 ], or qualitative studies focussing on suicidal ideation [ 23 ]. Research into suicide attempts in the perinatal period is therefore acutely needed, to gain a better understanding of the circumstances surrounding maternal suicide, the support available to perinatal women and how future deaths can be avoided. To our knowledge, no studies in the UK have used qualitative methods to explore the experiences of women who undertook a suicide attempt in pregnancy or during the postnatal period, yet survived. A better understanding of these events could help refine support and early interventions for women and birthing people at risk.

Aim of the study

The aim of this study was to explore the experiences of women and birthing people who had undertaken one or more suicide attempts during the perinatal period.

Study design

The ASPEN-study (Attempted Suicide during the PEriNatal period) utilised a qualitative design, using semi-structured interviews, to allow for an in-depth understanding of the contextual factors of perinatal suicide attempts, and to demystify the taboos and misunderstanding that are enshrouding this phenomenon [ 24 ]. Qualitative methods are particularly helpful to study sensitive topics [ 25 ] and can facilitate a deeper understanding of suicide attempts, beyond merely explaining [ 26 ]. We adopted a critical realist ontology, meaning participants’ accounts were seen as ‘truths’, even when their reported recall might have been impacted by serious mental illness and/or distress at the time of events [ 27 ]. We also adopted an objectivist epistemological stance meaning our belief system of how we acquire knowledge is one of reality existing and not being constructed, thus enabling an approach to participants’ narratives with no preconceived notions of how the participants may experience the phenomenon of interest [ 28 ]. Drawing on our epistemological and ontological positions, a critical realist approach to Thematic Analysis was best aligned with our philosophical underpinnings. Critical realist TA is an alternative approach to Thematic Analysis, that differs from codebook TA with its positivistic assumptions [ 29 ], or reflexive TA that is grounded in philosophical constructivism [ 30 , 31 ]. Critical realist TA is an explanatory approach that aims to produce causal knowledge through qualitative research on phenomena in the world around us [ 32 , 33 ]. We wanted to go beyond merely ‘exploring’ the phenomenon of perinatal suicide attempt, but aimed to understand what women had experienced during this time, such as any significant life course events they identified as relevant to their perinatal suicide attempt, the specific circumstances in the lead-up to the suicide attempt, their views of motherhood and how this impacted their mental health and any key elements or milestones that made a substantial difference on their journey to recovery. As such, this approach informed our development and structure of the interview schedule and analysis of the data to ensure that this was captured.

Participants and recruitment

The study was advertised through social media and third sector organisations in the field of perinatal mental health and suicide prevention (see Acknowledgements). Interested participants were included if they: (1) were 18 years of age or older; (2) had one or more suicide attempts during the perinatal period (i.e. from pregnancy up to the first year after giving birth), including when the attempt was prevented by self, a loved one or a member of the public; (3) and this happened less than 10 years ago; (4) were residing in the UK; and (5) were not receiving inpatient psychiatric care or experiencing an acute episode of a psychiatric disorder at the time of recruitment. The latter exclusion criterium was adopted in line with our safety protocol, to prevent delays in recovery by addressing such a difficult event outside a therapeutic environment. We used both convenience sampling and purposive sampling techniques: we interviewed anyone who responded to our recruitment materials, met the inclusion criteria and wanted to participate in the study after reading the participant information sheet (convenience sampling). Simultaneously, we also made concerted efforts through intense collaboration with community leaders and third sector organisations to recruit a diverse sample of women and birthing people from different ethnic, cultural, socio-economic and religious backgrounds (purposive sampling). A total of twelve women and birthing people contacted the research team with an interest in the study. Eligibility for the study was explored in a sensitive way, against the overall inclusion criteria and the three components of the study’s definition of ‘suicide attempt’ (suicidal ideation, intent and behaviour). Where in doubt, eligibility was discussed with the wider supervision team. In total, eleven interviews were conducted. A twelfth interested participant did not attend the (online) interview and did not respond to any follow-up emails. Recruitment was finalised when no new themes were being generated from data analysis of the last two interviews [ 34 ]. Participants received reimbursement of £50 for their time to complete the interview and a short demographic survey.

Data collection and analysis

Semi-structured interviews lasted between 38 and 115 min ( MTime  = 65 min) and were conducted via video-conference software (Microsoft Teams) by one researcher (KDB) between October 2022 and April 2023. Interviews were audio-recorded, transcribed and de-identified by a professional transcription company. Field notes were taken during the interview. Transcriptions were checked for accuracy by two researchers (KDB, AP). The interview schedule, which was co-designed with a panel of women with lived experience of perinatal mental illness, aimed to explore experiences of mental health difficulties prior to and during the perinatal period, the circumstances in the lead-up to the suicide attempt, and those following the suicide attempt. The interview schedule was used flexibly and did not prevent participants from sharing their story in the order they preferred, but instead, was used as an aid to prompt where required. Interview data was so rich that a secondary analysis focusing on social support prior and after women’s suicide attempts was undertaken, to be published separately.

Thematic Analysis (TA) [ 30 , 31 , 33 ] of the interview data was conducted using NVivo software while adopting a critical realist approach to Thematic Analysis [ 30 , 31 , 33 ]. The process of data analysis is rarely a linear event, and guided by Fryer’s previous work on critical realist TA [ 33 ], our approach to data analysis is presented in Fig.  1 and can best be described as follows:

Display of critical realist approach to thematic analysis

Public and patient involvement and engagement (PPIE)

An established advisory panel of women with lived experience of perinatal mental illness was consulted during different phases of the study with additional feedback sought from key stakeholders in the field of perinatal mental illness (see Acknowledgements). The process of PPIE during the study design and data collection phase of this study has been documented elsewhere [ 35 ]. A draft manuscript was shared with research participants to sense-check findings and comment on the manuscript. Participants were also given the opportunity to select a pseudonym of their choice. A total of 8 participants reviewed the draft manuscript and their feedback was incorporated in the final version of this paper.

The study team and reflexivity

The research team are a multidisciplinary team of researchers and clinical academics, with backgrounds in psychology (FLC, AE, RH, SAS, AP), psychiatry (LMH), and midwifery (KDB, JS), and several had clinical experience of supporting women who attempted suicide during the perinatal period (KDB, FLC, LMH). Within the research team, there was a balance between those who were parents and those who did not have children and researchers were at different stages of their life, spanning nearly three generations. The phenomenon of suicidality in the perinatal period was familiar to most of the research team, through extensive clinical experience and/or previous research in the field of perinatal mental health. Our positionality is therefore best described as ‘hybrid’, concordant with our critical realist ontology, as we aimed to align our existing knowledge and understanding (i.e. being embedded in the data) with the uniqueness and unfamiliarity of each individual story that was shared with us as a ‘truth’ (i.e. being an objective onlooker), in order to analyse the data in a coherent and sensitive matter [ 36 ]. Data were collected by one researcher (KDB) who was trained in advanced qualitative research techniques as well as having clinical experience as a perinatal mental health midwife. Analysis was conducted by the same researcher and a MSc Student with a background in clinical psychology (AP). Regular team meetings were held throughout the data collection and analysis phase to discuss and sense-check the developing themes and sub-themes.

Participant safety and researcher wellbeing

The safety and emotional wellbeing of all participants was key throughout the study. Thus, we adopted key elements of trauma-informed care into our study design [ 37 ]. A robust safety protocol, with clear pathways for escalation if required, was developed with the input of the PPIE advisory panel [ 38 ]. The study team undertook bespoke training in trauma-informed interviewing and the interview schedule was developed with this in mind. A safety check prior and after the interview was carried out by the same researcher (KDB), either via email or by phone and all participants were offered a confidential de-brief session with an independent clinical psychologist. The psychological safety of the researchers was also considered [ 25 ] and supported by access to regular reflective supervision sessions provided by a clinical psychologist and regular debrief sessions with supervisors to process any difficult emotions arising from conducting the interviews [ 39 ]. We were acutely aware of the potentially triggering content of the audio files and raised this with the transcription company [ 40 ]. When sending audio recordings for transcription, a summary of triggering content was provided to ensure the transcription would be appropriately allocated.

The majority of our sample ( N  = 11) were White British women ( n  = 10), with one woman from a mixed ethnic background. Participants were predominantly married ( n  = 8) and had higher education qualifications ( n  = 7). All but one participant had received a mental health diagnosis by a doctor or other healthcare professional in the past although the demographic survey did not allow to ascertain when this diagnosis had been given. More than half of the participants in our sample were given multiple diagnoses, indicating a high level of complexity in mental health presentation. In most cases, pregnancies had been planned ( n  = 9). All but two women were multiparous, with half of the sample having two children ( n  = 6), and three participants having three or more children. Two women were first-time mothers at the time of the attempt. Four women undertook their suicide attempt during pregnancy, with a fifth woman being pregnant whilst her older child was still under the age of one. The remaining six women undertook a suicide attempt within the year after giving birth. Four participants had a stay in an inpatient psychiatric Mother and Baby Unit (MBU), and for three of them the admission was preceded by their suicide attempt. For one participant, the admission in the Mother and Baby Unit was subsequently followed by an admission in a general psychiatric hospital, where she undertook the actual suicide attempt. A full table of demographic and clinical information can be found in Table  1 .

Qualitative analysis resulted in the identification of three key themes that played a significant role in the deterioration of women’s mental health during the perinatal period, ultimately culminating into a suicide attempt. Saturation for all themes and sub-themes was achieved after nine interviews when no new themes or subthemes were generated. Data from the remaining two interviews confirmed our analysis and provided additional depth and detail [ 34 ]. The three overarching themes are presented in Fig.  2 : Theme 1 ‘Trauma and Adversities’ , consisting of family history of perinatal mental illness and psycho-social adversities, including grief and trauma; Theme 2 ‘Disillusionment with Motherhood’ , marked by a variety of challenges that arose during pregnancy or the postnatal period; and Theme 3 ‘Entrapment and Despair’ , where multiple stressors piled up with no respite or support available, leading to a severe deterioration of mental ill-health, and ultimately, the suicide attempt.

Display of themes and sub-themes

Qualitative data is presented below, with the most representative quotations in text and an additional table of supplementary of quotations included in Supplementary Material 1 .

Theme 1: trauma and adversities

All respondents in our sample started their pregnancy journeys with a range of vulnerabilities, such as previous mental health difficulties, loss, trauma, or social risk factors including domestic abuse and substance misuse. Nevertheless, participants were not always aware of the profound impact these would have on their mental health later in pregnancy and in the postnatal period. Subthemes contributing to this were:

Psycho-social adversities

Many women had experienced mental health difficulties at some point in their life, and most were fully aware of their potentially devastating impact. Some had experienced poor mental health during adolescence and young adulthood and anticipated mental health problems during the perinatal period.

“I’ve had some terrible things happen in my life about failed marriage and fertility problems. Big, big things that I’ve sort of managed with a strength of mine that I perhaps didn’t have in my late teens or early 20s to overcome. So I guess it was always on my radar knowing the stats around you are more likely to have perinatal mental health problems if you’ve had bouts of depression in the past.” – Rosy .

In contrast, others had dealt with traumatic experiences in their life, but could not see how this would be relevant to their mental health during pregnancy and the postnatal period. They started their pregnancy unaware of any potential risks to their mental health.

“I lost my brother when he was 18. […] And I didn’t get a lot of time off work, I was kind of straight back into work. I’m a [professional role in mental health], so I was working in acute psychiatry. Back to work, dealing with other people’s trauma and I don’t think I really dealt with my own particularly well. And it was kind of I think eight months later I had an episode of depression, just very low mood, apathy, poor motivation, poor concentration, was treated briefly with antidepressants and then just kind of did okay after that. So there had been nothing.” – Simone .

Previous trauma was reported by almost all respondents, whether it being through a bereavement, or traumatic life experiences, such as miscarriage and infertility, domestic abuse, fractured relationships, or suicide of a loved one. Two women reported having experienced domestic abuse. One of them reported the abuse, which she described as a ‘punishment’, only started after informing her partner of the pregnancy.

“It was a punishment actually that I dared to be pregnant even though he knew I wasn’t on any contraception or anything. And it really shocked me because he had never ever been like that before.” – Lauren .

For the other respondent, the domestic abuse had been long-lasting and led her to seek coping strategies to deal with the trauma and pain. Being in an abusive relationship created the worst possible start for pregnancy, with no support available.

“Well, it was my first pregnancy. I was 24 so I still hadn’t grown up properly, and I was in a really bad domestic violence relationship so there was a lot going on around that. I was getting no support [for] my pregnancy. I was also using as well which I regret profoundly, but I was drinking, like I drank occasionally because of my mental health, and my mental health was just all over the place; I was really, really unwell.” – Selina .

For some, their previous mental health difficulties were related to an earlier pregnancy or birth experience:

“I had huge amounts of birth trauma from my first, which I had a debrief for from the hospital, which was incredibly unhelpful. And it ended in emergency caesarean [section], after nine days of labour, and being in hospital, as a very naïve 19-year-old, having her first baby; looking back on it, feeling quite coerced by doctors, but not realising at the time that that’s what was happening. And that has impacted me for the rest of my life.” – Sam .

The severity of previous perinatal mental health problems was varied, with one woman having experienced postpartum psychosis after the birth of her first child. Going into the second pregnancy, the risk of relapse was hanging over her like a dark cloud:

“I remember sort of going to the 12-week scan with [second pregnancy] and getting the picture and thinking like shit, it’s really real now and it could all happen again. So I was really scared about that. Because the reccurrence rates are quite high for psychosis, so it’s quite likely that I was going to become unwell. So I was worried, yes, I was really concerned.” – Marie .

This feeling of worry was also reported by women with mild to moderate mental health difficulties and was compounded by a fear of being dismissed and not being able to access support if they would require it.

“I think there was something about the anxiousness of doing it all again, because I think I had some prenatal depression with my first, that wasn’t picked up, and then postnatal anxiety through the roof, that was also never picked up, and was told that was normal.” – Sam .

Family history of perinatal mental illness

Several respondents had a family history of perinatal mental illness and were vigilant that they might experience something similar. To mitigate this risk, they actively sought perinatal mental health support at the earliest opportunity.

“My mum had severe perinatal mental illness, she was hospitalised after my older brother for a year without him […]. At the time they didn’t really have Mother and Baby Units. Then I came [a few] years later and she was hospitalised again but with me for six months, and she passed away […] So my dad said she was saying the same things as each time she’d been sectioned; she would present with very religious ideation and stuff like this, so it was exactly the same stuff, and she died by suicide. So because of that collective history, when we were trying to get pregnant we thought “We need to let someone know we’re trying to get pregnant,” and so I was referred then to a Perinatal Psychiatrist before we got pregnant” - Sarah .

For others, this family history was not something which was spoken about prior to their own experiences of perinatal mental illness. One respondent mentioned she had never been aware of her mother’s history of postnatal depression until she herself started to experience postnatal depression.

“I didn’t know that my mum had postnatal depression. That’s not anything that she’d shared until… I knew that my brother cried a lot and I think he had a cows’ milk protein intolerance, but I didn’t know that my mum…” – Rosy .

Theme 2: disillusionment with motherhood

While previous mental health challenges or trauma were present in the background, all women were profoundly disillusioned with motherhood which contributed to a deterioration in their mental health. This theme of ‘Disillusionment with Motherhood’ captures three sub-themes that reflect a discrepancy between what women thought or hoped motherhood would be like, and the crushing reality they found themselves in. Together, these sub-themes compounded each other and became a catalyst for worsening mental health. The following sub-themes address the various areas of disillusionment that women in our sample reported: in their bodies, in their identity and in the bond with their baby.

The physical and mental struggle of pregnancy and birth

All participants held hopes and expectations of what their pregnancy, birth or the postnatal period would be like. For some first-time mothers, it soon became clear that the societal rosy-hued image of pregnancy was very far removed from their own experience of pregnancy. As they came to grips with how pregnancy was unfolding, the harsh contrast between expectation and reality was so high that many struggled to adjust to this:

“There’s all this thing about pregnancy you’re supposed to be glowing and it’s all marvellous and you’ve got these wonderful hormones, but I was just beached on the sofa feeling hot and sweaty thinking when is this baby going to come out, when’s it going to come out?” – Simone .

For those who had been pregnant before, the reality of another pregnancy, knowing full well what was in store, started to dawn on them:

“I don’t know, it hit me like a ton of bricks. Like oh shit, I’m doing this again. I’m pregnant again.” – Liv .

In addition to these psychological adjustments to reality, respondents mentioned how the physical toll of pregnancy and childbirth played a significant role in the deterioration of their mental health. This close correlation between physical issues and mental health decline was abundantly clear across the sample.

“I was horribly, horribly sick [hyperemesis]; that got worse each pregnancy. I don’t know if that’s normal; I’d heard it is. But horribly sick, which makes you absolutely miserable anyway.” – Sam . “I just sort of couldn’t wait for it [the pregnancy] to end. Yes, I just wanted to give birth. So when they said that they were going to induce me at 40 weeks I thought thank goodness, because my sickness started again quite late on. Again, I don’t know if it was because of the pre-eclampsia. But yes, I was just very ready, very ready to have little one.” – Hannah .

In the most extreme cases, pregnancy was not viewed as something to be enjoyed, but something that left women feeling repulsive.

“So since the pregnancy, just my life fell apart really, I was unemployed, and I just felt the whole way through not just sick and ill, absolutely physically repulsive, like I just felt like an absolute filthy animal. I can’t describe the disgust I felt for myself and the bigger my bump grew, the more disgusting I felt. And I don’t know, it’s just everything was awful, every day was awful.” – Lauren .

For other women physical injuries as a result of childbirth left them unable to function and to enjoy the things they were looking forward to as a new mother.

“I had some tearing and I’d had an episiotomy and they hadn’t healed, so my episiotomy had opened up and there were lots of A&E [Accidents and Emergency] visits and an operation eventually, but I think that really didn’t help my mental health because obviously if you’re in pain all the time then, it just drags you down, doesn’t it? So I wasn’t able to do my normal stuff, I wasn’t able to just carry on with life because I was in pain, I couldn’t sit and I felt like I couldn’t do mummy things.” – Mel .

Apart from the physical repercussions of pregnancy and childbirth, it was the trauma of giving birth and its psychological sequalae which triggered a marked deterioration in the mental health of several women in our sample.

“It was just sort of like you couldn’t expect it to happen, it was like a poor pregnancy and sort of felt like, you know, the birth went wrong as well.” – Hannah . “I had a premature baby. And I went on, I don’t know, like trauma response. Like totally numb. I suppose the adrenalin, the shock, everything…” – Liv .

Invalidation of identity and self-sacrifice

Almost all respondents encountered negative experiences with healthcare professionals at some point during pregnancy or the postnatal period and felt invalidated and dismissed by these. Women reported they were not seen as a person, with a complete identity, but reduced to a vessel for their baby, with little consideration given to their own feelings. This led to a profound loss of identity, exacerbating feelings of being invisible, inadequate and unimportant.

“It was never about me. And I know it’s not all about me, but when I’m wanting to commit suicide, it is very much about me and not one person asked me if I was alright, they were more concerned if the baby was alright, which I was as well, but they just completely bypassed that there was any reason I would do it.“ – Selina .

There seemed to be a lack of professional inquisitiveness to understand why a mother(-to-be) would consider suicide. Instead, all attention was directed towards the well-being of the baby, leading to multiple missed opportunities for timely care and support. In some cases, women reached out but their calls for help were simply ignored while their mood was rapidly deteriorating. These experiences would have devastating consequences on their further help-seeking behaviour.

“What really killed me, what was like the punch in the face that I needed was when I had my midwife appointment at, I don’t know, eight, ten weeks, something like that, and I told her ‘you know what, I’m not feeling right. There’s something bubbling inside me that is not alright, is not correct. I feel more anxious than normal, I can’t sleep, it’s all very weird’. And she just said ‘okay, I’m going to pin that down here to talk about in your next appointment. But we’re not going to do anything right now’. I never saw her again, by the way.” – Liv .

Invalidating encounters like the one described above would have a profound impact on how women viewed healthcare professionals as a source of support and whether they would reach out to them and share the extent of their mental health problems.

“I just felt like nobody was listening at all, just not heard one bit.” – Anna .

For some, the invalidating experience would almost become a motivator to succeed in their suicide plans, as they felt the severity of their mental health problems was brushed under the carpet. One participant sought help after a first suicide attempt through a medication overdose and shared the following:

“So then I think a few more weeks went by and I went back to the doctor’s. I said to the doctor, ’I want to kill myself’. My medication and stuff, I was honest with him, I said the medications and stuff that he was put… I think he tried me on Zopiclone as well with not sleeping and he said, ‘Well if you wanted to kill yourself, you would have done it by now’. I was just… I sort of felt then I’ve got something to prove.” – Hannah .

The loss of identity made respondents feel invisible to healthcare professionals and went hand in hand with exhausting themselves to be the best possible mother for their baby. Women described feelings of total self-sacrifice to meet this perceived standard of ‘the perfect mother’.

“I think I sort of went into supermum mode when I came home, like I had something to prove, and again, it’s that background of failure. I think I’m quite hard on myself anyway and I’m quite… If something goes wrong, I’m probably harder on myself in my head than somebody else would be and I maybe got a bit of a perfectionist trait, so I really didn’t want to rely on anybody, I didn’t ask for help with anything regarding my little boy, and I had a really, really strong bond with him which was really positive, but I think I was sort of going like overkill with not asking for help.” – Hannah .

However, as women started to experience the hard reality of caring for a newborn, they felt unable to meet this impossible standard. The perceived pressure to achieve (unrealistic) goals as well as their feelings of failure to do so started to take a significant strain on their mental health.

“No one had ever told me that before. No one had ever said that you don’t just have to drop everything and run to your child. Because I thought that that was what a secure bond was; and obviously now I’ve learnt about attachment theory and things. I thought that, for her to be securely bonded with me, I had to give every last drop of myself to be her mum.” – Sam .

‘It wasn’t like starry-eyed love’

Closely linked with the previous sub-theme, was the realisation for many women that they did not feel an instant rush of love for their baby. Several women reported feeling unsettled and flawed as a mother when they felt distant and detached from their baby. Women tried their very best to ‘act as a mother’ and do whatever their baby required, but this did not mean they also ‘felt like a mother’.

“So, at the beginning it was very strange. It, because like I said, I was determined to do anything in my power to get that baby out of NICU [Neonatal Intensive Care Unit]. Like whatever it takes, whatever the cost. So it never felt like oh, it’s my baby. I would have jumped in front of a train for him but it was not like a starry-eyed love. And that kept going.” – Liv . “In terms of motherhood, yes, I don’t know whether I just felt I was failing at it or… [pause] I don’t know, I felt very not connected to the baby. I had felt very, very bonded and very connected, and then I wasn’t at all.” – Sarah .

Sadly, for some, this lack of bonding with their baby persisted for a long time, with enduring consequences on their mental health and family happiness, leading to feelings of guilt and shame with which they still are coming to terms with.

“I had no attachment to him probably for about five years, nothing at all, just this ongoing sense of regret and I remember thinking daily I’ve made such a massive mistake in my life and almost this like realisation you are never going to get back what you had before, so just this real hopelessness actually at life.” – Lauren . “I just couldn’t, I couldn’t bond with, I couldn’t. Even still now I love her to pieces but we’re not like mother and daughter, we’re not.” – Anna .

Theme 3: entrapment and despair

In the final phase leading up to the suicide attempt, women experienced an accumulation of stressors, unleashing an overwhelming feeling of hopelessness and entrapment, with seemingly no way out of the situation they found themselves in. The sub-themes identified under this theme of ‘Entrapment and Despair’ left women no breathing space or respite. A perfect storm was brewing, for which women only started to see one way out, and that was by taking their own life.

Feeling like a failure

All respondents expressed a pervasive feeling of utter failure, intersecting their different identifies as a woman, mother and partner. Their perceived inability to meet expectations, whether this related to giving birth, feeding their baby, or functioning as a mother and partner stood in sharp contrast with how they viewed other mothers, who seemed to be effortlessly successful in doing so.

“You sort of just blame yourself. So I can just remember looking at him when he was asleep thinking like, ’Oh you’ve failed, I can’t do this, I’ve already failed at being a mum, but I can’t do this’, and I can just remember just thinking that, looking at him. So I think even though I know it wasn’t my fault, you really felt like a failure and I felt like it was me, like there was something wrong with me, because a lot of women around me, like even family, they never really had experiences like that, they would have like a good pregnancy, like a vaginal birth, a normal birth, so I really felt like I had failed and I really blamed myself for that.” – Hannah .

This feeling of being a total failure created a sense of dread, leaving them fearful every day that their inability and incompetence as a mother would be further exposed.

“I remember seeing the light coming in through the curtains in the morning and just thinking “Oh my god, no, I can’t, I can’t do another day,” like my heart would go, and it was that dread, that whole dread would come over me and I’d think “I can’t do another day today, I just can’t do it. I can’t do it.” It was like a… Yes, it was really hard. I just felt like I don’t know, it felt like I just wasn’t good enough for her, I wasn’t good enough. […] It just felt like I wasn’t good enough to be her mum.” – Mel .

This overwhelming sense of incompetence erased feelings of love, enjoyment or hope and instilled a feeling that their baby and loved ones would be better off without them.

“So it just escalated. This what was going on in my head about, you know, me not being good enough, a failure, just escalated even more, that now I was thinking they are going to take him away, everyone will know how rubbish I am. So it was later that week where I still wasn’t sleeping and I just thought, do you know what, the both of them would be better off without me, because I’ve just failed, I’m just a failure. They will be better off without me.” – Simone . “…That just made me feel so, so low that I think that spiral of internalised feelings and negativity compounded with this sort of isolation and lack of sleep just led me to think they’d be better off without me around, they’d have a parent maybe or a family that would be able to meet their needs.” – Rosy .

Intense intrusive thoughts and abnormal experiences

More than half of the women in our sample reported intrusive ideas or unsettling experiences in the period preceding their suicide attempt. For many, this came as a total surprise as they were unaware this could happen and they felt unable to express the extent of their intrusive thoughts to anyone.

“I remember getting up and going to the bathroom to brush my teeth and then started hearing voices. So this voice, I didn’t recognise it, was just chanting, ‘stinky [name of baby], stinky [name of baby]’, which is my baby’s name and I was like why’s that happening? I don’t understand. Where’s that coming from? And then later that day I remember looking at my husband and thinking you’re the father of this baby, but I’m not its mother. It was a really odd thought, because I was like I know I’ve been pregnant and I know I’ve just been through all that labour, but I look at this baby and it’s not mine, but I know you are the dad. It was really odd.”- Simone . “They [the intrusive thoughts] were really, really scary. And totally uncontrollable as well. They were so vivid and they used to make me feel really upset because they happened quite early on, probably when she was only a few weeks old and I remembering googling them and reading loads of things about it didn’t mean that you were not coping, it didn’t meant that you were going to hurt your baby, it didn’t mean that you were depressed, but I think maybe I should have perhaps seen that as a bit of a sign that I needed to get some help because it was weeks and weeks later that I finally did. But yes, they did upset me and I only told my mum, I didn’t tell anybody else because I just felt as though are people going to think that I’m going to hurt her? Am I going to hurt her if I talk about it more? Yes, they were really scary.” – Rosy .

For some, these ideas were extremely horrific and a symptom of their psychotic illness at the time. Unfortunately, this was left undiagnosed and untreated, leaving them totally desperate and isolated while these unsettling thoughts became their lived reality.

“[…] I started to think ‘oh I’ve committed all these awful crimes in my life’ and I was kind of struggling to process what they were and I was thinking have I killed people and maybe buried them and I don’t know where they are or have I kind of done a big theft or something but not been able to quite work out where I’d stolen the money from. But I was kind of panicking that I’d either buried these bodies or hidden this money and I couldn’t remember where they were, so I was panicking someone else is going to find them and then I’m going to be put in prison. So I had this kind of I want to die because I’m scared I’m going to go to prison because I’ve done all these awful things. And I just felt absolutely desperate.” – Lauren .

Alone in this world

While these distressing experiences of failure and intrusive thoughts invaded women’s mindset, women felt profoundly alone and isolated. Social isolation was reported as a catalyst for their suicide attempt by every woman in the sample. For some, it was a continuation of the situation they had already been in, but during this stage everything felt more desperate, more alone.

“I think by that point I wasn’t talking to anybody at all, not family, certainly not the kids’ dad. The kids’ dad… […] I just totally blocked his number and I wasn’t seeing anybody else. And actually, in some ways, I don’t think anybody wanted to see me because they were just like, “Why have you had another kid?” So the only people that I saw were my own kids, maybe the odd school teacher at pickup but that was it. No one from work. No friends really.” – Lauren .

For others, it was the absence of their partner, who had to return to work after paternity leave, that served as a lever for an acute deterioration of their mental health.

“Everything was fine until about three weeks after the birth and we were back at home, and my husband went back to work; it was him going back to work and I just, yes, fell apart.” – Sarah .

Some respondents had their baby during one of the COVID-19 pandemic lockdowns, when social restrictions meant they were unable to meet with friends or family or seek peer support from other mothers. Instead, they felt cooped up inside their house, alone and isolated, with their suicidal thoughts.

“Completely isolated. Not being able to, like I could have been going to, I don’t know, prenatal yoga. Or breastfeeding groups or toddler groups. Anything else that would take me out of that loop. So I think obviously that made it a lot worse. I don’t think that it would have been… – I don’t know.” – Liv . “So she was three or four months old when Covid hit and it was the whole lockdown and yes, everything just got ten times worse because I couldn’t do anything then; I couldn’t go and talk to my mum, I couldn’t go out, I couldn’t even have doctor’s appointments, I couldn’t have hospital appointments which made me worry even more, and my husband’s a key worker so I was just on my own all the time. Yes, and I think that’s when it got to the point where I just felt like I couldn’t cope anymore.” – Mel .

Several respondents recalled how this feeling of loneliness instilled a determination in them to retreat into isolation further. This meant they no longer wanted to speak to or be around others, even when they had a supportive network in place. An unstoppable cycle of isolation and socially avoidant behaviour was set in motion.

“I just stopped talking to people. That’s when I stopped talking to anybody and I got really ill with my mental health because of it, but I thought “Well, why am I going to talk to people when they don’t listen to me anyway?”- Selina . “I knew exactly what I was doing. I knew how I was going to do it. I just wanted it done. So I thought I have to tell him. I have to tell him. But I couldn’t tell him that I was off to kill myself.” – Simone .

‘Tired’ and ‘wired’

All but two respondents mentioned sleep deprivation as a major contributing factor to the accumulation of despair in the days or weeks before the suicide attempt. The sheer exhaustion they felt prevented them from thinking clearly or having the energy to face their circumstances and get better.

“My little boy slept really well from, gosh, about three weeks, maybe less than that, he would sleep through the night which was really, really lucky, but I couldn’t sleep and I think, yes, the problems of not sleeping had a snowball effect.” – Hannah .

This level of hypervigilance and restlessness was for many women the reason why they were unable to sleep. While women reported to feel exhausted on one hand, they also reported to experience an unhealthy level of drive, anger or arousal, leaving them ‘tired and wired’.

“I stopped sleeping entirely; I was so angry all the time – it’s all the textbook depression symptoms, but I was so angry all the time. I was so tired all the time, but just wired, couldn’t sleep.”- Sam . “I remember thinking I’m just so tired, I just want to go to sleep. I just want to be asleep and not be disturbed. But my mind was just so busy.” – Simone .

Some displayed agitated and manic behaviour to such an extent that they struggled to understand how this went unnoticed.

“I live three miles from the hospital and after they sent me home the next day, I walked back to the hospital with [the] kids and I was mowing the lawn five days after he was born and cleaning the house from top to bottom and driving all over the city after a [caesarean] section and you kind of just think like why did nobody notice? How can you think that that’s normal behaviour? Because I just felt this constant need, like I’ve got to be constantly doing things, constantly cleaning things, constantly walking places or doing things, alongside this absolute anger.” – Lauren .

The irreversibility of motherhood

A majority of respondents described they came to a very agonising realisation that they were unable to get out of being a mother and that they found themselves in an irreversible situation, with no going back. The feeling of being ‘stuck’ was so pervasive, that many expressed they wanted either the pregnancy to end, or to not wake up. The irreversibility of motherhood was surrounded by feelings of deep regret and an admission that this had been their own fault and responsibility.

“I remember actually hoping he would be stillborn towards the end, I think after the bridge. I just really wanted for him to be stillborn because if he was then it would all be over but it wouldn’t be my fault, and then I couldn’t go back. I think there was this constant sense of wanting to go back before any of it had happened and I just have my [older] children and I was working and I was happy and I kept seeking these ways just to go back and there weren’t any and I just got more and more desperate as time went on.” – Lauren .

Many respondents shared their conflicting emotions towards their baby, who they viewed as the cause of their distress on the one hand, and as the reason to stay alive on the other.

“[…] I simply could not do it anymore. Help, or don’t help. Whatever. I’m just not going to be around. And it’s almost like this feeling of, you want someone to take the baby off you, so that the baby’s not around, or that’s how I felt. The baby is your reason to stay alive, but the baby’s also the thing that’s causing you so much anguish. And that conflict is just so hard.” – Sam .

Women were desperate to get a grip on the situation, yet it all felt in vain, with no improvement in sight. An overwhelming feeling of hopelessness took over, leaving women with no light at the end of the tunnel and only one option: taking their own life.

“I don’t know how to explain it. I was feeling like all the things that I had to do were like water in my hands. I could see it. I could feel it. I could hold it. But it was coming through my fingers and I couldn’t do anything about it.” – Liv .

Our study identified three overarching themes, marking different phases during which women’s mental health gradually deteriorated. Whilst not all sub-themes under these themes were necessarily reported by every respondent, they paint a comprehensive picture of the distressing feelings and contributing factors that women experienced in the days and weeks prior to their suicide attempt. Nearly half of our sample undertook a suicide attempt during pregnancy. This is in line with evidence suggesting antepartum suicide attempts are an important complication of pregnancy [ 2 ] and act as a strong predictor for postnatal suicidal behaviour, including completed suicide [ 41 ]. In addition, participants in our sample whose suicide attempt occurred during the postnatal period reported suicidal ideation had started during pregnancy, making the antenatal period a critical period for both antenatal and postnatal suicide prevention.

Our first theme, ‘Trauma and adversities’, captures vulnerabilities prior to conception and during pregnancy and has two key elements: (1) psycho-social adversities, including grief and trauma and (2) having a family history of perinatal mental health difficulties. Women with previous mental health difficulties, in particular those with a history of depression and mood disorders, are known to have an increased risk of fatal and non-fatal perinatal suicide attempts [ 3 , 42 , 43 ]. In addition, previous adverse life events and abuse, especially when these occurred during childhood, [ 44 , 45 ], perinatal bereavement and infertility [ 46 ], comorbid substance use disorders and intimate partner violence [ 47 ], have also been associated with an increased risk of perinatal suicidal thoughts and suicidal behaviour. While the need for trauma-informed maternity services has become a public health priority [ 37 ], it is not always matched by a general awareness of the importance to raise these issues during pregnancy or the postnatal period [ 48 ]. This is reflected in our findings, where several of the respondents had experienced significant trauma and adverse life events prior to becoming pregnant but did not feel this was particularly relevant. Similarly, for some respondents a significant family history of perinatal mental health problems was unbeknown to them until their own mental health deteriorated. In contrast, those respondents who started pregnancy with an alertness of the risk of perinatal mental health problems in light of their own previous mental health difficulties or those of close relatives, reported to have prophylactic support measures in place, for instance by accessing a community perinatal mental health service during pregnancy. While this did not prevent their mental health from deteriorating, it did shorten the referral and escalation times when they reached a point of crisis. Having meaningful conversations about the prevalence of perinatal mental ill-health early on in pregnancy and undertaking a thorough assessment of mental health-related risk factors, such as previous mental health history, domestic abuse, substance misuse, previous trauma, among others, at every contact with maternity services is therefore essential to mitigate these pre-existing vulnerabilities [ 49 ].

In our second theme, ‘Disillusionment with Motherhood’, we identified a range of triggering factors that caused women’s mental health to decline. A first and often overlooked sub-theme that we identified was the impact of a physically and mentally challenging pregnancy and birth and their role in a subsequent mental health deterioration. This was often exacerbated when women received unkind, disrespectful care, which made them feel invisible. Whilst there are no studies to our knowledge that directly associate birth trauma with an increased risk of perinatal suicide, the association between birth trauma and postpartum post-traumatic stress disorder (PTSD) is well established [ 50 , 51 , 52 , 53 ]. Postpartum PTSD in turn is associated with poor coping and stress and highly co-morbid with depression [ 50 ]. Less evidence is available on the association between pregnancy and birth complications and perinatal suicide risk. One study found no association between maternal complications in pregnancy and during birth with hospitalisation for a suicide attempt [ 54 ]. Yet, as illustrated by our study sample, not all suicide attempts will result in an admission to a general hospital for medical treatment. Thus, further evidence is needed to understand the role of physical health complications, both during pregnancy, childbirth and the postnatal period, and their role in mood deterioration.

The subsequent sub-themes of ‘Invalidation of identify and self-sacrifice’ and ‘It wasn’t like starry-eyed love’ are closely intertwined and bring the complexity of women’s conflicting emotions towards motherhood to light [ 55 ]. The desire to be a good mother as a newly found identify often came to the detriment of their own personal self, with many women reporting situations of total self-sacrifice [ 56 ]. These daily struggles, of trying to be the perfect mother on the one hand, while trying to bond with their baby on the other hand, was in many cases fertile soil to start feeling obsolete as a person and feeling disillusioned in motherhood. Our findings build on previous work from Reid et al. (2022), who identified key factors in the context of a perinatal suicide attempt, such as a strained mother-infant bond, lack of social support, loneliness and hopelessness [ 44 ]. This resonates with our sub-themes of “Feeling like a failure”, “Alone in this world” and “Irreversibility of motherhood”. Our final theme “Entrapment and Despair” is in line with Reid et al. (2022)’s final phase, called ‘Darkness Descends’ [ 23 ] and is marked by pervasive feelings of hopelessness and failed motherhood. Under this theme, a turbulent accumulation of negative factors resulting in a fast deterioration of their mental health was reported by all respondents. These feelings of hopelessness and being totally entrapped were so all-encompassing, that participants felt no other way out than by attempting to take their own life. However, in this third stage, women did not just feel disillusioned, they felt totally incompetent as a mother, to a point they believed their baby and family would be better off without them. The finality of motherhood, with no way to turn back time or to escape their fate (‘Irreversibility of Motherhood’), drove them further to despair [ 55 ]. The MBRRACE-UK reports have repeatedly raised such feelings of incompetence as a mother and estrangement of the infant as a ‘red flag’ which should be taken seriously to prevent future maternal deaths by suicide [ 1 , 13 , 57 ].

Another factor we identified in this phase was the occurrence of intrusive thoughts and unsettling (psychotic) experiences, brought together in the subtheme ‘Intense intrusive thoughts and abnormal experiences’. The majority of our respondents reported abnormal experiences that were very unsettling to them. For some, these could be described as intrusive thoughts in the context of Obsessive Compulsive Disorder. Although intrusive thoughts are common among new parents, such experiences are often misunderstood, surrounded by stigma, and sometimes being misdiagnosed or over-normalised and dismissed, preventing timely and effective intervention [ 58 ]. For others in our sample, these experiences may have been delusions or hallucinations as part of a psychotic presentation. For all respondents who had them, the experiences were intense, frightening and difficult to understand at the time. Practitioner knowledge, sensitive risk assessment and careful diagnostic consideration about the nature and type of internal experiences is fundamental to appropriately treat women experiencing these upsetting experiences [ 59 ]. Yet equally important is increased public awareness on the occurrence and impact of such experiences, so women can seek timely support when they experience these frightening thoughts or delusions.

A third common factor we identified was sleep deprivation during pregnancy and the postnatal period and its profound impact on women’s mental health. Sleep disturbance is very common in relation to mental illness, and was highlighted in the most recent MBRRACE-UK report as marked and persistent in those women who died by suicide, even when treated with hypnotic medication [ 1 ]. A recent systematic review by Palagini et al. (2023) showed insomnia and poor sleep quality increased the odds of suicidal risk in pregnant and postpartum women by more than threefold, independently from psychiatric comorbidity [ 60 ]. Especially in a context of onset of psychotic illness, such as bipolar disorder, insomnia often precipitates other psychotic symptoms such as restlessness, irritability and rapid mood changes [ 61 ]. Unfortunately, as sleep loss is generally accepted as a common ‘side effect’ of pregnancy and having a newborn baby, its severity and potential devastating consequences are poorly understood and often minimised. Overall, the theme of ‘Entrapment and Despair’ captures the sheer hopelessness and inability to gain control over a rapidly escalating situation, in line with Klonsky and May’s Three-Step-Theory of suicide [ 62 ]. This theoretical model of suicide considers three steps to suicide. Being in pain and hopelessness leads to suicidal ideation (Step 1), which can be exacerbated by isolation or countered by connectedness (Step 2). The final step is marked by one’s capability of attempting suicide (Step 3). The pervasive feeling of hopelessness and lack of control gradually paved the way for a solid belief it would be better to no longer be here. Participants in our sample shared how they accepted this belief and waited for an opportunity to carry out their suicide plan. This combination of hopelessness and rejection of motherhood, a belief that death would be preferred and an opportunity to act on these thoughts has been previously theorised as a culmination of factors for perinatal suicide [ 23 ]. In line with findings from previous MBRRACE-UK reports, the vast majority of respondents in our sample turned to violent methods for suicide, such as jumping, hanging, suffocation, using sharp objects or stepping in front of traffic, reflecting the high level of distress women found themselves in and the determination with which they wanted to carry out their plan.

Strengths and limitation

Our study is the first to our knowledge to focus on suicide attempts during the perinatal period and offers a rich understanding of women’s experiences surrounding these highly distressing events. A strength of this study is the recruitment of participants across the UK, rather than one geographical area, with diversity in the sample regarding age, parity, psychiatric morbidity, social support, educational attainment and socio-economic status. Significant efforts were made to recruit women from diverse ethnic, cultural, and religious backgrounds, through invitations and meetings with community leaders and designated support groups. Despite our efforts, we did not achieve diversity regarding ethnic and cultural background, one of the limitations of this study. Ethnicity data from the latest MBRRCACE-UK report showed that women who died by suicide were predominately white (86%), with no further ethnicity details on the remaining 14% [ 1 ]. As a result, although this was never our intention, we are aware our study findings are focusing on the experiences of White women in the UK and not transferrable to an ethnically and culturally more diverse sample, or to other countries across the globe. In addition, our sample consisted predominantly of participants with higher educational qualification, in positions of employment. Therefore, our analysis was unable to explore the impact of poverty on women’s suicidality, which is known to be an important driver of poor (perinatal) mental health [ 63 , 64 ]. We are aware a more ethnically, culturally, religiously and socio-economically heterogenous sample is likely to represent a diversity of perspectives, highlighting these issues. Another limitation was the design of the demographic survey, which did not specifically differentiate between mental health diagnosis given during the life course or specifically at the time of the suicide attempt. Suicide research, especially in a perinatal context, is notorious for its recruitment challenges. Saturation for all themes and sub-themes was achieved well within the available sample and is one of the strengths of this study. Another strength of our study is the sensitivity and rigour of patient and public involvement throughout the various phases of the study. This was crucial to do justice to the courage which participants had shown by sharing their stories and to keep respondents safe throughout their research participation.

Implications for clinical practice and care and future research

Our study highlights the importance of routine inquiry of previous mental health difficulties and family history of perinatal mental health problems at the first encounter during pregnancy. Yet, such an assessment needs to be more comprehensive than a tick-box exercise and should be accompanied by a personalised conversation about prevalence of perinatal mental health problems and potential triggers, including trauma and grief. Professionals should be given adequate time during antenatal encounters to explore this in depth and, where required, receive additional training in perinatal mental health to build confidence in doing so. The perinatal period is often described as a ‘window of opportunity’, but this goes both ways: While every encounter creates opportunity for screening, detection and support, it also has the potential for invoking or deepening trauma. Our study revealed the devastating and long-lasting impact of unkind, careless and dismissive remarks by healthcare professionals on women’s mental health, thus instilling a feeling of failure by throw-away comments that would ripple on weeks and months after they were uttered. Perinatal healthcare professionals need to understand the weight of their words, how they can provide hope when women are struggling, but equally how they can push women further into isolation and despair. Culturally aware and trauma-informed clinical practice is essential to achieve this, whilst also recognising the impact of burn-out and carer’s fatigue in an overstretched and under-resourced healthcare service. Healthcare professionals need to be cautious about the difference between normalising and dismissing distressing feelings. In addition, professionals need to fully understand the profound impact of physical, social and psychological risk factors as identified by our study. The physical and mental challenge of pregnancy and childbirth, often in combination with a traumatic birth experience should not be underestimated. An impaired mother-infant dyad, feelings of resentment of motherhood, and the discrepancy between women’s expectations and their lived reality are all key triggers that should be discussed, identified and addressed at the earliest opportunity, in a non-judgemental and sensitive way to avoid further escalation. Women need to be validated and reassured by professionals when disclosing these feelings, and be informed that support is available to help them transition into motherhood. Continuity of care throughout the perinatal period, if done with sensitivity and person-centredness, can foster trusting relationship so women feel safe and supported to disclose distressing feelings. Similarly, insomnia and sleep disturbance, albeit in combination with restlessness and irritability, intrusive thoughts and feelings of lack of control and failure are red flags for severe and rapid mental health deterioration that required prompt and effective action. More than anything, women need to feel safe and listened to, so they can share their feelings with healthcare professionals without fear of judgement, shame and stigma. Our study showed that women will often retreat into silence prior to a suicide attempt and in that moment more than ever rely on attentive, educated and compassionate support networks to avoid a suicide attempt.

Future research into perinatal suicide attempt should focus on developing effective preventative interventions and public health strategies, both in an antenatal and postnatal context, with their distinct healthcare professionals’ involvement and resource challenges. By using implementation science methods, these interventions should be tested and evaluated on their efficacy and effectiveness, in order to reduce future maternal suicides.

This study is the first UK-based qualitative study looking at suicide attempts during the perinatal period. Our findings identified three themes with several contributing factors which led women to undertake a suicide attempt. It is important to understand the impact of previous trauma and life adversity when going through pregnancy and the postnatal period. Feelings of disillusionment with motherhood and feeling entrapped in a hopeless situation were key phases women experienced in the lead-up to their suicide attempt. Our study findings have important implications for clinical practice and healthcare professionals should be aware of warning signs, to improve timely detection and facilitate meaningful inquiry, in order to improve care and prevent future maternal suicide deaths.

Data availability

The datasets generated and analysed during the current study are not publicly available due to the privacy of the participants in the study and the sensitive nature of the data. Further inquiries can be directed to the corresponding author ([email protected]).

We acknowledge not all people who give birth and go through the perinatal period identity as women, female or mothers. While this paper utilises predominantly the terms women and mothers, we aim to include also those who identify as transgender, non-binary or any other gender identity.

Knight M, Bunch K, Patel R, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk J. Saving lives, improving mothers’ Care Core Report - lessons learned to inform maternity care from the UK and Ireland Confidential enquiries into maternal deaths and morbidity 2018-20. In. Oxford: National Perinatal Epidemiology Unit, University of Oxford; 2022.

Google Scholar  

Rao WW, Yang Y, Ma TJ, Zhang Q, Ungvari GS, Hall BJ, Xiang YT. Worldwide prevalence of suicide attempt in pregnant and postpartum women: a meta-analysis of observational studies. Soc Psychiatry Psychiatr Epidemiol. 2021;56(5):711–20.

Article   PubMed   Google Scholar  

Howard LM, Khalifeh H. Perinatal mental health: a review of progress and challenges. In: World Psychiatry vol. 19; 2020: 313–327.

Gold KJ, Singh V, Marcus SM, Palladino CL. Mental health, substance use and intimate partner problems among pregnant and postpartum suicide victims in the National Violent Death Reporting System. Gen Hosp Psychiatry. 2012;34(2):139–45.

Stein A, Pearson RM, Goodman SH, Rapa E, Rahman A, McCallum M, Howard LM, Pariante CM. Effects of perinatal mental disorders on the fetus and child. Lancet. 2014;384(9956):1800–19.

Letourneau NL, Dennis C-L, Benzies K, Duffett-Leger L, Stewart M, Tryphonopoulos PD, Este D, Watson W. Postpartum Depression is a Family Affair: addressing the impact on mothers, fathers, and children. Issues Ment Health Nurs. 2012;33(7):445–57.

Bauer A, Parsonage M, Knapp M, Iemmi V, Adelaja B. The costs of perinatal mental health problems. Lond School Econ 2014.

Chin K, Wendt A, Bennett IM, Bhat A. Suicide and maternal mortality. Curr Psychiatry Rep. 2022;24(4):239–75.

Article   PubMed   PubMed Central   Google Scholar  

Diguisto C, Saucedo M, Kallianidis A, Bloemenkamp K, Bodker B, Buoncristiano M, Donati S, Gissler M, Johansen M, Knight M, et al. Maternal mortality in eight European countries with enhanced surveillance systems: descriptive population based study. BMJ. 2022;379:e070621.

Cantwell R. Perinatal mental health service development across the UK – many achievements, growing challenges. Ir J Psychol Med 2022:1–4.

Knight M, Bunch K, Tuffnell D, Patel R, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ. Saving Lives, Improving Mothers’ Care - Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2017-19. In. Oxford; 2021.

Knight M, Nair M, Tuffnell D, Shakespeare J, Kenyon S, Kurinczuk JJ. Saving Lives, Improving Mothers’ Care Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2013-15 Maternal, Newborn and Infant. Clinical Outcome Review Programme; 2017.

Knight M, Bunch K, Tuffnell D, Jayakody H, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ. Saving Lives, Improving Mothers’ Care Maternal, Newborn and Infant Clinical Outcome Review Programme; 2018.

Knight M, Bunch K, Cairns A, Cantwell R, Cox P, Kenyon S, Kotnis R, Lucas N, Lucas S, Marshall L, et al. Saving Lives, Improving Mothers’ Care Rapid report: Learning from SARS-CoV-2-related and associated maternal deaths in the UK Maternal. Newborn and Infant Clinical Outcome Review Programme; 2020.

Department of Health and Social Care. Suicide prevention in England: 5 year cross-sector strategy. In.; 2023.

Orsolini L, Valchera A, Vecchiotti R, Tomasetti C, Iasevoli F, Fornaro M, De Berardis D, Perna G, Pompili M, Bellantuono C. Suicide during Perinatal Period: epidemiology, risk factors, and clinical correlates. Front Psychiatry. 2016;7:138.

Gandhi SG, Gilbert WM, McElvy SS, El Kady D, Danielson B, Xing G, Smith LH. Maternal and neonatal outcomes after attempted suicide. Obstet Gynecol. 2006;107(5):984–90.

Schiff MA, Grossman DC. Adverse perinatal outcomes and risk for postpartum suicide attempt in Washington state, 1987–2001. Pediatrics. 2006;118(3):e669–675.

Crosby A, Ortega L, Melanson C. Self-directed violence surveillance; uniform definitions and recommended data elements. In.: National Center for Injury Prevention and Control (U.S.). Division of Violence Prevention; 2011.

Brown GK, Beck AT, Steer RA, Grisham JR. Risk factors for suicide in psychiatric outpatients: a 20-year prospective study. J Consult Clin Psychol. 2000;68(3):371–7.

Article   CAS   PubMed   Google Scholar  

Douglas J, Cooper J, Amos T, Webb R, Guthrie E, Appleby L. Near-fatal deliberate self-harm: characteristics, prevention and implications for the prevention of suicide. J Affect Disord. 2004;79(1):263–8.

Johannsen BM, Larsen JT, Laursen TM, Ayre K, Howard LM, Meltzer-Brody S, Bech BH, Munk-Olsen T. Self-harm in women with postpartum mental disorders. Psychol Med. 2020;50(9):1563–9.

Reid H, Pratt D, Edge D, Wittkowski A. What makes a perinatal woman suicidal? A grounded theory study. BMC Psychiatry. 2022;22(1):386.

Al-Halabi S, Garcia-Haro J, de la Fe Rodriguez-Munoz M, Fonseca-Pedrero E. Suicidal behavior and the perinatal period: taboo and misunderstanding. Psychol Papers. 2021;42(3):161–9.

Silverio SA, Sheen KS, Bramante A, Knighting K, Koops TU, Montgomery E, November L, Soulsby LK, Stevenson JH, Watkins M, et al. Sensitive, challenging, and difficult topics: experiences and practical considerations for qualitative researchers. Int J Qualitative Methods. 2022;21:16094069221124739.

Article   Google Scholar  

Hjelmeland H, Knizek BL. Why we need qualitative research in Suicidology. Suicide Life-Threatening Behav. 2010;40(1):74–80.

O’Mahoney J. Critical realism and qualitative research: an introductory overview. In, edn.; 2016.

Williams R. The epistemology of knowledge and the knowledge process cycle: beyond the objectivist vs interpretivist. J Knowl Manage. 2008;12(4):72–85.

Article   CAS   Google Scholar  

Boyatzis RE. Transforming qualitative information: thematic analysis and Code Development. Thousand Oaks, CA: Sage; 1998.

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qualitative Res Sport Exerc Health. 2019;11(4):589–97.

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77–101.

Wiltshire G, Ronkainen N. A realist approach to thematic analysis: making sense of qualitative data through experiential, inferential and dispositional themes. J Crit Realism. 2021;20(2):159–80.

Fryer T. A critical realist approach to thematic analysis: producing causal explanations. J Crit Realism. 2022;21(4):365–84.

Vasileiou K, Barnett J, Thorpe S, Young T. Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC Med Res Methodol. 2018;18(1):148.

De Backer K, Newburn M, Hildersley R, Easter A. Conducting a sensitive research study on perinatal suicide attempts — the power of patient and public involvement and Engagement (PPIE). MIDIRS Midwifery Digest. 2023;33(2):115–8.

Martinez Dy A, Martin L, Marlow S. Developing a critical Realist positional Approach to Intersectionality. J Crit Realism. 2014;13(5):447–66.

Law C, Wolfenden L, Sperlich M, Taylor J. A good practice guide to support implementation of trauma-informed care in the perinatal period. In.; 2021.

Gibson S, Benson O, Brand SL. Talking about suicide: confidentiality and anonymity in qualitative research. Nurs Ethics. 2013;20(1):0969733012452684.

Johnson B, Clarke JM. Collecting Sensitive Data: the impact on researchers. Qual Health Res. 2003;13(3):421–34.

Kiyimba N, O’Reilly M. An exploration of the possibility for secondary traumatic stress among transcriptionists: a grounded theory approach. Qualitative Res Psychol. 2016;13(1):92–108.

Lindahl V, Pearson JL, Colpe L. Prevalence of suicidality during pregnancy and the postpartum. Arch Womens Ment Health. 2005;8(2):77–87.

Gressier F, Guillard V, Cazas O, Falissard B, Glangeaud-Freudenthal NMC, Sutter-Dallay A-L. Risk factors for suicide attempt in pregnancy and the post-partum period in women with serious mental illnesses. J Psychiatr Res. 2017;84:284–91.

Taylor CL, Broadbent M, Khondoker M, Stewart RJ, Howard LM. Predictors of severe relapse in pregnant women with psychotic or bipolar disorders. J Psychiatr Res. 2018;104:100–7.

Reid H, Pratt D, Edge D, Wittkowski A. Maternal suicide ideation and Behaviour during pregnancy and the First Postpartum Year: a systematic review of psychological and psychosocial risk factors. Front Psychiatry 2022, 13.

Bright AM, Doody O, Tuohy T. Women with perinatal suicidal ideation-A scoping review of the biopsychosocial risk factors to inform health service provision and research. PLoS ONE. 2022;17(9):e0274862.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Weng S-C, Chang J-C, Yeh M-K, Wang S-M, Lee C-S, Chen Y-H. Do stillbirth, miscarriage, and termination of pregnancy increase risks of attempted and completed suicide within a year? A population-based nested case–control study. BJOG: Int J Obstet Gynecol. 2018;125(8):983–90.

Forray A, Yonkers KA. The Collision of Mental Health, Substance Use Disorder, and suicide. Obstet Gynecol. 2021;137(6):1083–90.

Cull J, Thomson G, Downe S, Fine M, Topalidou A. Views from women and maternity care professionals on routine discussion of previous trauma in the perinatal period: a qualitative evidence synthesis. PLoS ONE. 2023;18(5):e0284119.

National Institute for Health Care Excellence. Antenatal and postnatal mental health: Antenatal and postnatal mental health: clinical management and service clinical management and service guidance guidance clinical guideline. In.; 2014.

Ayers S, Bond R, Bertullies S, Wijma K. The aetiology of post-traumatic stress following childbirth: a meta-analysis and theoretical framework. Psychol Med. 2016;46(6):1121–34.

Sheen K, Slade P. The efficacy of ‘debriefing’ after childbirth: is there a case for targeted intervention? J Reproductive Infant Psychol. 2015;33:308–20.

Sheen K, Slade P. Examining the content and moderators of women’s fears for giving birth: a meta-synthesis. J Clin Nurs. 2018;27(13–14):2523–35.

Jomeen J, Martin CR, Jones C, Marshall C, Ayers S, Burt K, Frodsham L, Horsch A, Midwinter D, O’Connell M, et al. Tokophobia and fear of birth: a workshop consensus statement on current issues and recommendations for future research. J Reprod Infant Psychol. 2021;39(1):2–15.

Schiff M, Grossman D. Adverse perinatal outcomes and risk for postpartum suicide attempt in Washington State, 1987–2001. Pediatrics. 2006;118(3):e669–75.

Nicolson P. Loss, happiness and postpartum depression: the ultimate paradox. Can Psychol. 1999;40:162–78.

Staneva AA, Bogossian F, Wittkowski A. The experience of psychological distress, depression, and anxiety during pregnancy: a meta-synthesis of qualitative research. Midwifery. 2015;31(6):563–73.

Knight M, Bunch K, Tuffnell D, Shakespeare J, Kotnis R, Kenyon S, Kurinczuk JJ. Saving Lives, Improving Mothers’ Care Maternal, Newborn and Infant Clinical Outcome Review Programme. In. Oxford; 2020.

Fairbrother N, Woody SR. New mothers’ thoughts of harm related to the newborn. Arch Womens Ment Health. 2008;11(3):221–9.

Challacombe FL, Bavetta M, DeGiorgio S. Intrusive thoughts in perinatal obsessive-compulsive disorder. BMJ. 2019;367:l6574.

Palagini L, Cipriani E, Miniati M, Bramante A, Gemignani A, Geoffroy PA, Riemann D. Insomnia, poor sleep quality and perinatal suicidal risk: a systematic review and meta-analysis. J Sleep Res 2023:e14000.

Sharma V, Mazmanian D. Sleep loss and postpartum psychosis. Bipolar Disord. 2003;5(2):98–105.

Klonsky ED, May AM, 3ST). The Three-Step Theory (: A New Theory of Suicide Rooted in the Ideation-to-Action Framework. International Journal of Cognitive Therapy 2015, 8(2):114–129.

Mathieu S, Treloar A, Hawgood J, Ross V, Kõlves K. The role of unemployment, Financial Hardship, and economic recession on suicidal behaviors and interventions to mitigate their impact: a review. Front Public Health. 2022;10:907052.

Parra-Saavedra M, Miranda J. Maternal mental health is being affected by poverty and COVID-19. Lancet Global Health. 2021;9(8):e1031–2.

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Acknowledgements

We would like to thank all the women and birthing people who took part in this study, for their time, their bravery and the honesty with which they shared their story. Their commitment to improve care for others who find themselves in a similar position was a privilege to witness. We thank Dr Clare Dolman, the Patient Advisory Group at the Section for Women’s Mental Health at King’s College London, the South London Applied Research Collaboration Maternity and Perinatal Mental Health theme Patient and Public Involvement and Engagement group for their suggestions and feedback throughout the different stages of this study. We also like to thank the third sector partners that were closely involved in the study journey, such as Maternal Mental Health Alliance, Mothers for Mothers, the Institute of Health Visiting, the Motherhood Group, REFORM, National Childbirth Trust (NCT), and Maternity Action.

This work was supported by the National Institute for Health and Care Research (NIHR) South London Applied Research Collaboration (NIHR200152). Patient and public involvement engagement activities undertaken for this study were funded through a King’s Engaged Research Network (KERN) Public Engagement Small Grant Award. Kaat De Backer, Sergio A. Silverio, Professor Jane Sandall and Dr Abigail Easter are supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. Kaat De Backer (King’s College London) is also in receipt of an NIHR Doctoral Research Fellowship (NIHR302565). Sergio A. Silverio (King’s College London) is currently in receipt of a Personal Doctoral Fellowship from the NIHR ARC South London Capacity Building Theme [NIHR-INF-2170]. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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Department of Women & Children’s Health, School of Life Course and Population Sciences, Faculty of Life Sciences & Medicine, King’s College London, 10th Floor North Wing, St. Thomas’ Hospital, Westminster Bridge Road, Lambeth, London, SE1 7EH, UK

Kaat De Backer, Alexandra Pali, Jane Sandall & Abigail Easter

Department of Clinical Psychological Science, Faculty of Psychology and Neuroscience, Maastricht University, Maastricht, The Netherlands

Alexandra Pali

Section of Women’s Mental Health, Institute of Psychiatry, Psychology, and Neuroscience, King’s College London, Denmark Hill, 16 De Crespigny Park, London, SE5 8AF, England

Fiona L. Challacombe, Rosanna Hildersley & Louise M. Howard

Patient and Public Involvement and Engagement Lead for ARC South London, Maternity and Perinatal Mental health theme, Department of Women & Children’s Health, School of Life Sciences and Medicine, King’s College London, 10th Floor North Wing, St. Thomas’ Hospital, Westminster Bridge Road, Lambeth, London, SE1 7EH, UK

Mary Newburn

Department of Women & Children’s Health, School of Life Course & Population Sciences, Faculty of Life Sciences & Medicine, King’s College London, 6th Floor Addison House, Great Maze Pond, Southwark, London, SE1 1UK, UK

Sergio A. Silverio

School of Psychology, Faculty of Health, Liverpool John Moores University, Liverpool, Merseyside, L3 3AF, UK

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Contributions

AE, LMH, JS, RH, KDB conceived the work and designed the study. SAS and MN contributed to the development of the design. MN led the Public and Patient Involvement and Engagement. KDB, AP, AE, FLC contributed to data acquisition. KDB, AP, AE, FLC interpreted the data. KDB drafted the manuscript and incorporated revisions from all other authors. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Abigail Easter .

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Ethical approval and consent to participate.

Ethical approvals were sought and granted by the King’s College London Health Faculties Research Ethics Committee, in January 2021 (reference HR-20/21-20092), with a further amendment in June 2022, after further feedback from the advisory panel and stakeholder meeting (reference MOD-21/22-20092). The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.

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Written informed consent was obtained from all participants in the study. Participants were also invited to proof-read the manuscript to ensure they were satisfied with selection of quotations.

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De Backer, K., Pali, A., Challacombe, F.L. et al. Women’s experiences of attempted suicide in the perinatal period (ASPEN-study) – a qualitative study. BMC Psychiatry 24 , 255 (2024). https://doi.org/10.1186/s12888-024-05686-3

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Received : 22 December 2023

Accepted : 14 March 2024

Published : 03 April 2024

DOI : https://doi.org/10.1186/s12888-024-05686-3

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• Qualitative research
• Women’s mental health

BMC Psychiatry

ISSN: 1471-244X

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ORIGINAL RESEARCH article

Challenges and support needs in psychological and physical health among pilots: a qualitative study.

• 1 School of Medicine, Shanghai Jiao Tong University, Shanghai, China
• 2 Other, Shanghai, China
• 3 National Center For Global Health and Medicine, Shinjuku, Tokyo, Japan
• 4 School of Public Health, School of Medicine, Shanghai Jiao Tong University, Shanghai, China
• 5 School of Nursing, Shanghai Jiao Tong University, Shanghai, Shanghai, China
• 6 International Peace Maternity and Child Health Hospital, Shanghai, Shanghai Municipality, China

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Abstract Introduction Physical and mental health problems among pilots affect their working state and impact flight safety. Although pilots’ physical and mental health problems have become increasingly prominent, their health has not been taken seriously. This study aimed to clarify challenges and support needs related to psychological and physical health among pilots to inform development of a more scientific and comprehensive physical and mental health system for civil aviation pilots. Methods This qualitative study recruited pilots from nine civil aviation companies. Focus group interviews via an online conference platform were conducted in August 2022. Colaizzi analysis was used to derive themes from the data and explore pilots’ experiences, challenges, and support needs. Results The main sub-themes capturing pilots’ psychological and physical health challenges were: 1) imbalance between family life and work; 2) pressure from assessment and physical examination eligibility requirements; 3) pressure from worries about being infected with COVID-19; 4) nutrition deficiency during working hours; 5) changes in eating habits because of the COVID-19 pandemic; 6) sleep deprivation; 7) occupational diseases; 8) lack of support from the company in coping with stress; 9) pilots’ yearly examination standards; 10) support with sports equipment; 11) respecting planned rest time; and 12) isolation periods. Discussion The interviewed pilots experienced major psychological pressure from various sources, and their physical health condition was concerning. We offer several suggestions that could be addressed to improve pilots’ physical and mental health. However, more research is needed to compare standard health measures for pilots around the world in order to improve their physical and mental health and contribute to overall aviation safety.

Keywords: Occupational Health, Mental Health, physical health, qualitative study, Pilots and cabin crew, COVID-19

Received: 06 Dec 2023; Accepted: 05 Apr 2024.

Copyright: © 2024 Xu, Bao, Zhang, Li, Zhang, Li, Jin, Chen, Duan, Shi, Wang, Lu, Chen, Gao, Han, Ren, Su and Xiang. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Yuyan Bao, School of Medicine, Shanghai Jiao Tong University, Shanghai, China Lin Zhang, Other, Shanghai, China Qingqing Jin, Other, Shanghai, China Yan Chen, Other, Shanghai, China Qingqing Duan, Other, Shanghai, China Feng Shi, Other, Shanghai, China Linlin Wang, Other, Shanghai, China Ziyang Lu, School of Medicine, Shanghai Jiao Tong University, Shanghai, China Xuhua Chen, School of Medicine, Shanghai Jiao Tong University, Shanghai, China Qijing Gao, School of Medicine, Shanghai Jiao Tong University, Shanghai, China Bin Ren, Other, Shanghai, China Ya Su, School of Nursing, Shanghai Jiao Tong University, Shanghai, Shanghai, China Mi Xiang, School of Public Health, School of Medicine, Shanghai Jiao Tong University, Shanghai, 200240, China

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.