From perceived affliction to realized opportunity: Evaluation and transformation of the experience of patients on haemodialysis in Pakistan

Author Identifier

Haeeba Shouket

https://orcid.org/0000-0001-7488-5110

Date of Award

2023

Document Type

Thesis

Publisher

Edith Cowan University

Degree Name

Doctor of Philosophy

School

School of Arts and Humanities

First Supervisor

Eyal Gringart

Second Supervisor

Deirdre Drake

Third Supervisor

Ulrich Steinwandel

Abstract

Kidney failure leading to End Stage Renal Disease (ESRD) is a growing challenge for patients, their significant others, and health systems. Most ESRD patients undergo haemodialysis (HD), as renal replacement therapy, for their survival. HD is also the preferred treatment for the majority of ESRD patients in Pakistan (Jha, 2013). HD is performed in specialized clinics for three to five hours, usually three times weekly, although a two times per week treatment schedule is more common in Pakistan due to widespread financial and resource constraints. During HD, each patient is connected to a machine, which temporarily replaces the patient’s kidney. These sessions, while vital for survival, are often experienced by patients on HD as a major and disabling challenge (Castro, Caiuby, Draibe, & Canziani, 2003). Other common challenging aspects of HD include emotional difficulties, social limitations, dependence on others, fatigue, and an altered lifestyle; aspects that make HD an ambivalently experienced treatment of a chronic health condition. No study has been identified, that has specifically considered transforming the haemodialysis (HD) experience from negative to positive, although such transformation has potential to improve the lives of ESRD patients on HD overall. This study was couched in positive psychology and intended to positively transform the experience of HD patients in Pakistan. The current project comprised four successive steps. The first step was a qualitative investigation, in which in-depth semi-structured interviews were conducted with 24 ESRD patients undergoing HD and six healthcare professionals from hospitals and dialysis centers caring for this patient cohort in Pakistan. Data were collected on the lived experiences of HD in the context of the Pakistani healthcare setting (Chapter 3). The second step explored how the experience of HD could be potentially positively transformed in a way that has potential to positively impact patients’ lives overall (Chapter 4). Data were analysed using Interpretive Phenomenological Analysis (IPA). The third step developed an electronic app-based psychological intervention, which was informed by the findings of phase one and relevant scientific literature (Chapter 5). The fourth step evaluated the efficacy and acceptability of the intervention using a quasi-experimental study with ESRD patients on HD (Chapter 6). The results indicated that the app-based intervention had positively transformed patients’ experience of HD and benefitted their lives overall. The contribution of this research along with future research directions are discussed.

DOI

10.25958/rqz4-g676

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