Dialysis Decision Making, Dialysis Experiences, and Illness Perceptions: A Qualitative Study of Pakistani Patients Receiving Maintenance Hemodialysis

RATIONALE & OBJECTIVE: The incidence and prevalence of patients with kidney failure requiring dialysis are increasing in Pakistan. However, in-depth perspectives on kidney care from Pakistani people requiring maintenance dialysis are lacking. STUDY DESIGN: Qualitative interview study. SETTING & PARTICIPANTS: Between September 2020 and January 2021, we interviewed 20 adults receiving maintenance hemodialysis in 2 outpatient dialysis units in Pakistan. We asked open-ended questions to explore their experiences with various aspects of kidney care. ANALYTICAL APPROACH: We recorded, transcribed, and then, using a phenomenological approach, thematically analyzed interviews. RESULTS: We observed the following 6 main themes: (1) Patients perceived various supernatural phenomena as causes of their illness and chose traditional medicine for chronic kidney disease (CKD) treatment. (2) Patients expressed dissatisfaction with their physicians’ communication. They felt poorly informed and resented their decision to initiate dialysis. (3) Family members tried to dissuade patients away from dialysis but also provided support once dialysis was initiated. (4) Patients and families found it challenging to afford dialysis and transplantation and also to arrange for transportation. (5) Women found it challenging to fulfill their obligations as wives and mothers while receiving maintenance dialysis. (6) Patients seemed reluctant to discuss end-of-life care. LIMITATIONS: We collected data from only 2 hospitals in neighboring cities. Additionally, patients on peritoneal dialysis were not included. CONCLUSIONS: Our findings shed light on patients’ perspectives on kidney care in Pakistan and call for financially feasible solutions to raise kidney disease awareness and improve patients’ experiences with dialysis. Physician training in communication and shared dialysis decision making along with the development of culturally adapted decision aids are needed to improve CKD knowledge and shared decision making. Although financial challenges preclude many from receiving long-term dialysis, cost-effective strategies to improve the availability of other options (eg, supportive kidney care, peritoneal dialysis, and transplantation) are still warranted.