Perceptions of patients with end-stage kidney disease (ESKD) and their informal caregivers on palliative care as a treatment option: a qualitative study

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Abstract

Background

Palliative care is increasingly becoming an accepted treatment choice for many individuals diagnosed with end-stage kidney disease (ESKD). Yet, its utilisation is non-existent in many lower- and middle-income countries (LMICs). This study explored the perceptions of individuals with ESKD and their informal caregivers on palliative care as a treatment option for the disease in Ghana.

Methods

This was a phenomenological study, with an in-depth analysis of data collected from nine individuals with ESKD and six informal caregivers through individual, face-to-face semi-structured interviews. The study was conducted in two renal centres within the Kumasi metropolis, Ghana among individuals with ESKD seeking care from both renal centres and their informal caregivers.

Results

Three main themes were derived from this study – motivation for initiating haemodialysis, facing realities of haemodialysis, and considering palliative care. Participants felt that haemodialysis (HD) was not meeting their health expectations and demonstrated a general willingness to utilise palliative care if it would reduce suffering.

Conclusions

This study has shown that individuals with ESKD or their informal caregivers would consider palliative care services, if available. It paves the way for discussions about palliative care for ESKD to begin across renal centres within Ghana and other similar settings. Exploring perspectives of clinicians in such settings could inform strategies on how to implement palliative care for ESKD management in such settings.

Related collections

Most cited references 42

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Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory.

Helene Starks, Susan Brown Trinidad (2007)

The purpose of this article is to compare three qualitative approaches that can be used in health research: phenomenology, discourse analysis, and grounded theory. The authors include a model that summarizes similarities and differences among the approaches, with attention to their historical development, goals, methods, audience, and products. They then illustrate how these approaches differ by applying them to the same data set. The goal in phenomenology is to study how people make meaning of their lived experience; discourse analysis examines how language is used to accomplish personal, social, and political projects; and grounded theory develops explanatory theories of basic social processes studied in context. The authors argue that by familiarizing themselves with the origins and details of these approaches, researchers can make better matches between their research question(s) and the goals and products of the study.

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Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease: developing a roadmap to improving quality care.

Sara N Davison, Adeera Levin, Alvin H Moss … (2015)

Patients with advanced chronic kidney disease (CKD) have a high burden of physical and psychosocial symptoms, poor outcomes, and high costs of care. Current paradigms of care for this highly vulnerable population are variable, prognostic and assessment tools are limited, and quality of care, particularly regarding conservative and palliative care, is suboptimal. The KDIGO Controversies Conference on Supportive Care in CKD reviewed the current state of knowledge in order to define a roadmap to guide clinical and research activities focused on improving the outcomes of people living with advanced CKD, including those on dialysis. An international group of multidisciplinary experts in CKD, palliative care, methodology, economics, and education identified the key issues related to palliative care in this population. The conference led to a working plan to address outstanding issues in this arena, and this executive summary serves as an output to guide future work, including the development of globally applicable guidelines.

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

R Morton, A Tong, Mary Howard … (2010)

Objective To synthesise the views of patients and carers in decision making regarding treatment for chronic kidney disease, and to determine which factors influence those decisions. Design Systematic review of qualitative studies of decision making and choice for dialysis, transplantation, or palliative care, and thematic synthesis of qualitative studies. Data sources Medline, PsycINFO, CINAHL, Embase, social work abstracts, and digital theses (database inception to week 3 October 2008) to identify literature using qualitative methods (focus groups, interviews, or case studies). Review methods Thematic synthesis involved line by line coding of the findings of the primary studies and development of descriptive and analytical themes. Results 18 studies that reported the experiences of 375 patients and 87 carers were included. 14 studies focused on preferences for dialysis modality, three on transplantation, and one on palliative management. Four major themes were identified as being central to treatment choices: confronting mortality (choosing life or death, being a burden, living in limbo), lack of choice (medical decision, lack of information, constraints on resources), gaining knowledge of options (peer influence, timing of information), and weighing alternatives (maintaining lifestyle, family influences, maintaining the status quo). Conclusions The experiences of other patients greatly influenced the decision making of patients and carers. The problematic timing of information about treatment options and synchronous creation of vascular access seemed to predetermine haemodialysis and inhibit choice of other treatments, including palliative care. A preference to maintain the status quo may explain why patients often remain on their initial therapy.

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Author and article information

Contributors

Edward Appiah Boateng:

ORCID: https://orcid.org/0000-0003-1000-8076

guardian2405@yahoo.com

Journal

Journal ID (nlm-ta): BMC Palliat Care

Journal ID (iso-abbrev): BMC Palliat Care

Title: BMC Palliative Care

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-684X

Publication date (Electronic): 20 August 2020

Publication date PMC-release: 20 August 2020

Publication date Collection: 2020

Volume: 19

Electronic Location Identifier: 133

Affiliations

[1 ]GRID grid.460815.e, ISNI 0000 0004 0463 6129, Department of Nursing, , Garden City University College, ; Kumasi, Ghana

[2 ]GRID grid.9829.a, ISNI 0000000109466120, Department of Nursing, , Kwame Nkrumah University of Science and Technology, ; Kumasi, Ghana

Author information

Catherine Sarfo-Walters https://orcid.org/0000-0002-3389-7171

Edward Appiah Boateng https://orcid.org/0000-0003-1000-8076

Article

Publisher ID: 640

DOI: 10.1186/s12904-020-00640-y

PMC ID: 7441556

PubMed ID: 32819349

SO-VID: b9090f20-cfd7-4568-be11-de16e8d4d169

License:

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