Informal caregivers' experiences of caring for people receiving dialysis: A mixed-methods systematic review

Living with end stage kidney disease and having dialysis is burdensome, and there is a need for support from informal caregivers (i.e. family members and friends). Renal health professionals readily acknowledge and value the support provided by caregivers although the activities and experiences of caring for a loved-one who is receiving dialysis is less well understood.

To review studies about the perspectives and experiences of family members and friends who provide support for adults receiving either haemodialysis or peritoneal dialysis.

A mixed-methods systematic review was conducted. Eight databases (Medline, CINAHL, EMBASE, PsycINFO, Proquest, Web of Science, Cochrane Library and JBI library) were comprehensively searched using relevant key words for studies regardless of design published in English from January 2006 to July 2017.

Twenty studies were included in this review. Informal caregivers undertake many everyday activities as well as a range of dialysis-specific activities, report an elevated level of burden, feel overwhelmed, experience social isolation, and also need to consider their own health. A unique finding was that caregivers also experienced personal growth that may defuse the impact of caregiving burden and to help them develop a sense of resilience to sustain the support through the tough times and for many years.

This review substantiates that caregiver burden is due to the unrelenting nature of complex dialysis-specific activities although resilience often develops. Additional research is necessary to understand social support in this context and how health teams can assist caregivers further.