Characteristics of dialysis important to patients and family caregivers: a mixed methods approach

Abstract

Background: Little is known about pre-dialysis patients' or family caregivers' preferences for dialysis modality and the reasons underlying their decisions. The aim of this study was to rank the most important characteristics of dialysis on which patients and caregivers make decisions about treatment.

Methods: A mixed methods approach was used with groups of pre-dialysis patients (chronic kidney disease Stage 4/5), dialysis patients and family caregivers. Characteristics of dialysis were identified and ranked individually and then consensus of the most important characteristics was determined within each group. Purposive sampling was used to recruit participants until data saturation was achieved. Transcripts of focus groups were coded and analysed to examine the rationale behind the ranking.

Results: Thirty-four participants from two Australian hospitals attended six 'nominal group' focus groups between September 2009 and February 2010. Two groups involved pre-dialysis patients (total n = 8), two involved peritoneal and haemodialysis patients, respectively (n = 9) and two involved caregivers of dialysis patients (n = 17). We identified 28 characteristics of dialysis important to patients and caregivers. Patient groups agreed that the most important characteristics were (i) survival, (ii) convenience of dialysis at home and (iii) dialysis-free days. For caregivers, the most important were (i) convenience of dialysis at home, (ii) respite and (iii) the ability to travel.

Conclusions: Patients and family caregivers highly value treatment that enhances survival and can be performed at home. Future planning of dialysis services could better reflect these priorities through provision of increased home dialysis support services and planned respite for caregivers.