Decision-making experiences of patients with end-stage kidney disease (ESKD) regarding treatment in Ghana: a qualitative study

Edward Appiah Boateng,Catrin Evans,Linda East

doi:10.1186/s12882-018-1175-z

Abstract

BackgroundThis is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa. The study addresses an important gap in the literature concerning choice and decision-making in an international context.MethodsThe study employed a qualitative research design, using grounded theory methodology. In-depth interviews were conducted with twenty-two adult patients with ESKD in 3 clinical settings in Ghana. Data analysis involved coding and a constant comparative approach to generate key themes. Ethical approval was gained from relevant ethics committees both in Ghana and the United Kingdom.ResultsFour main factors (personal, financial, healthcare system, and support network) were identified to influence patient decision-making regarding ESKD treatment in Ghana. Treatment was initiated for various reasons, including, initially, the urgent need to avoid premature death. Many approached their condition hoping for a cure and did not always understand the chronic nature of their condition. Financial and geographical inaccessibility of renal replacement therapy (RRT), as well as a relative lack of biomedical treatment choices, made decision making daunting for the individual with ESKD in Ghana. The subject of death or conservative management was not openly discussed. Rather patients did everything possible to seek alternative forms of treatment, including the simultaneous use of other non-RRT and traditional or faith-based healing approaches.ConclusionsWhilst similarities exist, this study illuminates stark cultural and contextual differences which make decision-making on ESKD treatment a daunting experience for the individual with ESKD in Ghana - as compared to those in high-income countries. The challenges associated with ESKD management in Ghana calls for meticulous efforts at primary prevention of the disease, including interventions directed at effective management of diabetes mellitus, hypertension and other chronic kidney disease (CKD) precursor conditions. Enhancing information provision would promote informed decision making, particularly within the initial stages of patient decision-making.

Highlights

This is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa
Personal factors in this study are similar to those identified in other studies on patient decision-making in ESKD in several instances
The financial aspect of decision making is entirely different in the Ghanaian setting as compared to many other high-income settings owing to the lack of health insurance policies to take care of costs of treatment

Summary

Introduction

This is the first qualitative study to explore patient decision-making regarding end-stage kidney disease (ESKD) treatment in sub-Saharan Africa. Individuals with end-stage kidney disease (ESKD) have to come to terms with a life-threatening condition, deal with inadequate information, select from limited choices, and carefully evaluate alternatives during decision-making regarding their treatment [1]. The research on patient decision-making in ESKD, has come mainly from high-income countries, from North America and Western Europe. This is despite the fact that the incidence of ESKD in low- and middle-income countries (LMICs) is greater than that of high-income countries, occurring mostly in a relatively younger age group (between 20 and 50 years old), with many of the affected individuals being breadwinners of their families [5,6,7,8,9]. The higher costs of managing ESKD hugely impedes initiation and sustenance of RRT in many LMICs [12, 14,15,16]

Methods

Results

Discussion

Conclusion