부산대학교 도서관

Background: People treated with home dialysis report social and emotional isolation, fear of catastrophic events and concern about being a burden to family. There is a paucity of research exploring psychological wellbeing among people dialysing at home. We aimed to explore the psychological health issues related to home dialysis and how these issues may impact on decisions about sustaining home-based treatment. Methods: We conducted a qualitative interview study with 40 participants: This included patients on home dialysis and caregivers/family members who had experienced home dialysis. Data were analyzed inductively to generate themes and a conceptual framework. Results: We identified five 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 (individualized feelings of low mood; stigma of seeking mental health support; contemplating treatment withdrawal and suicide; grief from the loss of a normal life); seeking mental health support (normalizing mental health support as a distinct entity in dialysis care; additional tools for mental health support and connection) Discussion: If we are to truly provide excellence in care of home dialysis patients we need to think beyond treatment and physical conditions and address psychological distress. Identification and support for psychological distress not only will support quality of life, but will also address factors that contribute to non-adherence and treatment withdrawal.