Qualitative Research in CKD: An Overview of Methods and Applications

doi:10.1053/j.ajkd.2014.02.026

American Journal of Kidney Diseases

Volume 64, Issue 3, September 2014, Pages 338-346

https://doi.org/10.1053/j.ajkd.2014.02.026 Get rights and content

There recently has been a paradigm shift in health care policies and research toward greater patient centeredness. A core tenet of patient-centered care is that patients' needs, values, and preferences are respected in clinical decision making. Qualitative research methods are designed to generate insights about patients' priorities, values, and beliefs. However, in the past 5 years (2008-2013), only 23 (0.4%) of the 6,043 original articles published in the top 5 nephrology journals (assessed by impact factor) were qualitative studies. Given this observation, it seems important to promote awareness and better understanding within the nephrology community about qualitative research and how the findings can contribute to improving the quality and outcomes of care for patients with chronic kidney disease. This article outlines examples of how qualitative research can generate insight into the values and preferences of patients with chronic kidney disease, provides an overview of qualitative health research methods, and discusses practical applications for research, practice, and policy.

Section snippets

Overview

Quantitative research addresses questions about the effectiveness of interventions, prognosis, and strength of associations among risk factors and outcomes. Qualitative research focuses on different but complementary objectives: understanding people’s beliefs, attitudes, perspectives, motivations, and values.¹⁹ Qualitative approaches are used to generate hypotheses and theories to explain social and experiential phenomena in health.⁹ Therefore, inherent differences exist between quantitative

Applications in Research, Practice, and Policy

Selected qualitative studies in CKD are summarized in Table 2. Figure 1 provides a framework to illustrate how qualitative research can be applied in the context of research, practice, and policy.

Conclusion

Patient centeredness is now widely espoused in health care. Qualitative research can identify patients’ values and attitudes, which essentially shape their perceptions of illness, health, and health care and thus influence their behavior. More recently, systematic review and synthesis of multiple primary qualitative studies have emerged to provide evidence about the experiences and perspectives of participants across different populations, cultures, health care contexts, and settings, as well

Acknowledgements

Support: None

Financial Disclosure: The authors declare that they have no relevant financial interests.

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Australian Rural Caregivers’ Experiences in Supporting Patients With Kidney Failure to Access Dialysis and Kidney Transplantation: A Qualitative Study
2022, American Journal of Kidney Diseases
Citation Excerpt :
Interviews were audio-recorded and transcribed verbatim. Interviews were conducted until data saturation was achieved.26 Using thematic analysis, the transcripts were imported into HyperRESEARCH (version 4.0.1; ResearchWare Inc), and 1 author (N.S.R.) read transcripts and inductively identified preliminary concepts and grouped similar concepts into initial themes and subthemes.
Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy.
Qualitative study.
18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation.
Semistructured interviews were conducted. Interview transcripts were thematically analyzed.
The 18 participants were aged 20 to 78 years; 13 (72%) were female, and 13 (72%) were the spouse/partner of the patient. We identified 5 themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation); financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy); ongoing psychological trauma (concern for neglect and stress on children, long-term emotional distress); overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems); and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime).
The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings.
Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed.
This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure.
Perspectives of Clinicians on Shared Decision Making in Pediatric CKD: A Qualitative Study
2022, American Journal of Kidney Diseases
Citation Excerpt :
Qualitative research methods are designed to generate insights about patients’ priorities, values, and beliefs. Semistructured interviews can elicit in-depth insights about the individual priorities, values, and beliefs of the participants that explain their decisions and behaviors.25-31 We followed the Consolidated Criteria for Reporting Qualitative Health Research (COREQ) to report this study, which covers the research team, study design, and data analysis and reporting.32
Clinical decision-making priorities may differ among children, their parents, and their clinicians. This study describes clinicians’ perspectives on shared decision making in pediatric chronic kidney disease (CKD) and identifies opportunities to improve shared decision making and care for children with CKD and their families.
Semistructured interviews.
Fifty clinicians participated, including pediatric nephrologists, nurses, social workers, surgeons, dietitians, and psychologists involved in providing care to children with CKD. They worked at 18 hospitals and 4 university research departments across 11 countries (United States of America, Canada, Australia, People’s Republic of China, United Kingdom, Germany, France, Italy, Lithuania, New Zealand, and Singapore).
Interview transcripts were analyzed thematically.
We identified 4 themes: (1) striving to blend priorities (minimizing treatment burden, emphasizing clinical long-term risks, achieving common goals), (2) focusing on medical responsibilities (carrying decisional burden and pressure of expectations, working within system constraints, ensuring safety is foremost concern), (3) collaborating to achieve better long-term outcomes (individualizing care, creating partnerships, encouraging ownership and participation in shared decision making, sensitive to parental distress), and (4) forming cumulative knowledge (balancing reassurance and realistic expectations, building understanding around treatment, harnessing motivation for long-term goals).
Most clinicians were from high-income countries, so the transferability of the findings to other settings is uncertain.
Clinicians reported striving to minimize treatment burden and working with children and their families to manage their expectations and support their decision making. However, they are challenged with system constraints and sometimes felt the pressure of being responsible for the child’s long-term outcomes. Further studies are needed to test whether support for shared decision making would promote strategies to establish and improve the quality of care for children with CKD.
Mixed-methods research in nephrology
2022, Kidney International
Mixed-methods research involves the mixing of at least 1 qualitative and 1 quantitative method in the same research project or set of related projects. Combined use of qualitative and quantitative research methods in nephrology has increased over the last 10 years. In this review, we aim to advance the understanding of mixed-methods research within the kidney community. Qualitative and quantitative techniques provide different but noncompeting representations of what exists in the world; findings from qualitative research do not generalize to a large population, whereas those from quantitative research may not apply to individuals within the diverse and heterogeneous larger population. Mixed-methods research combines these complementary representations, allowing the strengths of each method to be combined and the strengths of 1 method to address the limitations of the other. Mixed-methods approaches can be used to: (i) gain a more complete understanding of a research problem, (ii) explain initial results from one method with results from another, (iii) generate instruments, for example, survey tools and interventions, (iv) evaluate services, and (v) optimize clinical trial design and delivery. There are 3 core mixed-methods designs: explanatory sequential, exploratory sequential, and convergent parallel, which can be combined. We discuss each design in turn before discussing analysis and integration of findings from the different methods. We provide case studies that illustrate the application of these study designs to kidney research questions. We briefly discuss mixed-methods systematic reviews and evidence synthesis before finally highlighting guidance on how to appraise published mixed-methods research.
Patients’ Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia
2022, Kidney International Reports
This study aimed to describe the perspectives of patients from rural communities on access to all forms of kidney replacement therapy to inform strategies to address such inequity.
Semistructured interviews were conducted. Transcripts were thematically analyzed.
There were 28 participants, of whom, 14 (50%) were female and 5 (17%) Aboriginal or Torres Strait Islander. The mean distance to a nephrologist was 107 km, and transplant center was 447 km. We identified the following 5 themes: encumbered by transportation hardship (burdening of family and friends, frustration at lack of transportation options, heightened vulnerability to road trauma, unrelenting financial strain); deprived of treatment and care (isolated from centralized services, unresolved psychological distress, vulnerable without care, disadvantaged by limited options); confused by multiple information sources (despair at fragmented care, fear of unfamiliar health settings and treatments); compounding economic consequences (depletion of income/leave, coping with unexpected expenses); and the looming threat of relocation (devastated by displacement, resigned to periods of separation, uncertainty in sourcing appropriate accommodation).
Patients with chronic kidney disease (CKD) in rural communities face profound economic, logistical, and psychological obstacles to accessing dialysis and transplant, leaving them feeling vulnerable and confused. To achieve equity of access and improved health outcomes for rural patients with CKD, barriers to dialysis, transplantation, and psychological services in this population require addressing through policy and alternate models of health service delivery, in consultation with rural communities and those families affected by CKD.
The Transplant Experience for Undocumented Immigrant Patients Formerly Receiving Emergency Dialysis and Caregivers
2024, JAMA Network Open
Investigating strategies to improve AccesS to Kidney transplantation (the ASK trial): a protocol for a feasibility randomised controlled trial with parallel process evaluation
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View all citing articles on Scopus

: Because an author of this manuscript is an editor for AJKD, the peer-review and decision-making processes were handled entirely by an Associate Editor (Raymond Vanholder, MD, PhD) who served as Acting Editor-in-Chief. Details of the journal’s procedures for potential editor conflicts are given in the Editorial Policies section of the AJKD website.

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PerspectiveQualitative Research in CKD: An Overview of Methods and Applications

Section snippets

Overview

Applications in Research, Practice, and Policy

Conclusion

Acknowledgements

Am J Kidney Dis

Am J Kidney Dis

Lancet

Am J Transplant

Am J Kidney Dis

Am J Kidney Dis

Am J Kidney Dis

Am J Kidney Dis

Patient Educ Counsel

Am J Kidney Dis

Is patient-centred care associated with lower diagnostic costs?

Health Policy

Patient-centred healthcare, social media and the internet: the perfect storm?

BMJ Qual Saf

The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda

JAMA

Crossing the Quality Chasm: A New Health System for the 21st Century

The views of patients and carers in treatment decision making for chronic kidney disease: a systematic review and thematic synthesis of qualitative studies

BMJ

Do Cochrane systematic reviews report patient-important outcomes?

Users' guides to the medical literature XXIII. Qualitative research in health care A. Are the results of the study valid?

JAMA

Users' guides to the medical literature: XXIII Qualitative research in health care B. What are the results and and how do they help me care for my patients

JAMA

An introduction to reading and appraising qualitative research

BMJ

A quantitative analysis of qualitative studies in clinical journals for the 2000 publishing year

BMC Med Inform Decis Making

Rigour and qualitative research

BMJ

An increasing number of qualitative research papers in oncology and palliative care: does it mean a thorough development of the methodology of research?

Health Qual Life Outcomes

The content and methodology of research papers published in three United Kingdom primary care journals

Br J Gen Pract

Qualitative research in health care: II. A structured review and evaluation of studies

J Eval Clin Pract

Critical and honest conversations: the evidence behind the “Choosing Wisely” campaign recommendations by the American Society of Nephrology

Clin J Am Soc Nephrol

What guidelines should or should not be: implications for guideline production

Nephrol Dial Transplant

Qualitative Research in Health Care

Qualitative and Mixed Methods in Public Health

Perspective
Qualitative Research in CKD: An Overview of Methods and Applications