Consumer values, perspectives and experiences of psychological health when living with dialysis at home: An in-depth interview study

Abstract

Background: People treated with home dialysis report social and emotional isolation, fear of catastrophic events and concern about being a burden. There is a paucity of research exploring psychological well-being among consumers dialysing at home. We aimed to explore the psychological health issues related to home dialysis, and how these issues may impact on sustaining home-based treatment. Methods: We conducted a qualitative interview study with 36 consumers. We included patients with experience of home dialysis and caregivers. Thirteen participants had experienced peritoneal dialysis, seven home haemodialysis, seven had experienced both and nine caregivers. Data were analysed inductively to generate themes and a conceptual framework. Results: We identified four themes and subthemes: overwhelming isolation and disconnection (devastating isolation of home dialysis; abandoned from support; escalating anxiety; compounding impact of feeling like a burden); importance of support systems (impact on relationships; need for emotional support; reassurance through shared experiences; valuing trustworthy and committed clinicians); burden of distress (individualised feelings of low mood; grappling with stigma surrounding diagnosis; contemplating treatment withdrawal and suicide); seeking mental health support (normalising mental health support as a distinct entity in dialysis care; overcoming barriers to seeking mental health support; additional tools for mental health support and connection). Conclusion: Consumers may experience intense psychological distress during home-based dialysis care. Increasing clinician and health services literacy about the management of psychological impacts of home-based dialysis may improve consumer safety, quality of life and sustainability of home treatment.