Components of quality of life in hemodialysis patients from family caregivers' perspective: a qualitative study

Background Patients with end-stage kidney disease experience serious complications which affect their lives. Few studies have investigated the patients' quality of life qualitatively from the perspective of family caregivers as the closest individuals to the patients. The family caregivers are directly involved in the patients' disease progression and observe the changes, problems, and complications of disease and hemodialysis. This study aimed to explain the components of quality of life in hemodialysis patients from the family caregivers' perspective. Methods In this qualitative inductive content analysis, 16 family caregivers of hemodialysis patients, presenting to the teaching hospitals of Tehran, Iran, were enrolled via maximum-variation purposive sampling; sampling continued until reaching data saturation. The data collection method included in-depth semi-structured interviews. Also, an inductive content analysis was carried out based on Elo and Kyngas' method. Results A total of 311 codes, 19 subcategories, eight generic categories, and three main categories were extracted in this study. The main (and the generic categories) included mental and psychological problems (depressive mood, incompatibility and reduced tolerance, mental exhaustion, and deprivation of basic needs), social disruption (social isolation and social threats), and physical problems (general complications and disabilities and defects in the normal functioning of organs). Conclusion Family caregivers can be valuable information sources for formal caregivers to plan treatment for chronically ill patients who are mainly cared for at home. The present results can help us increase the existing knowledge on the impact of end-stage kidney disease and hemodialysis on the patients' quality of life. It seems that addressing the issues related to quality of life, mentioned by the caregivers, can positively affect the patients' quality of life and even reduce the caregivers' burden.