Patients with end-stage renal disease supported on dialysis experience high morbidity and mortality. Little is known about family caregiver experiences during the disease. Qualitative research methods were used to explore the experiences of family caregivers caring for patients receiving dialysis. In-depth, semi-structured, in-person interviews were completed with 18 family caregivers in rural and urban settings. Interviews were audiotaped, transcribed verbatim, and analyzed using thematic and descriptive analysis. Major themes identified included challenges navigating the health system, caregiver burden, perceptions of palliative care, symptom management, and decision-making. Caregiver burdens are significant including physical, emotional, social, and economic dimensions. There is a need to recognize and improve support for family caregivers and increase collaboration with nephrology and palliative care services from commencement of dialysis until death and into bereavement.
Keywords: end-of-life care; end-stage renal disease; family caregivers; palliative care.