Family members’ involvement in their relative’s kidney disease management and treatment choices: a survey using qualitative methods

ABSTRACT Background: Chronic kidney disease (CKD) is a chronic and life-limiting condition with no cure. Family members play a significant, yet often unacknowledged, role in supporting a relative with advanced kidney disease. Aim: This thesis investigates family members’ involvement in their relative’s kidney disease management and treatment choices. Its objectives are: investigate family members’ understanding of CKD and involvement in treatment decisions; identify family members’ support needs; explore the emotional impact on family members and how they made sense of their experiences. Method: Cross-sectional survey design employing semi-structured interviews with seven family members of people with advanced kidney disease. Data was analysed using the qualitative framework approach. Participants’ narratives were also interpreted using the assimilation model. Results: Four overarching concepts emerged from the findings: ‘Uncertainty’, ‘Maintaining a normal life’, ‘Developing an understanding’ and ‘Identifying and meeting needs’. Family members struggled with the uncertainty of their situation. They made sense of their experience at a different pace and oscillated between levels of avoidance and acceptance. Family members attempted to maintain as normal a life as possible but there were often barriers to this. They developed an understanding of CKD and their role within their relative’s healthcare decisions and management. Whilst all family members had examples of feeling supported by HCP, most had examples where they felt the support could improve. Discussion: Whilst family members favour treatment and illness management decisions that keep life as normal as possible, their everyday life is impacted by their relative’s illness. Family members utilise different strategies to help them cope with the uncertainty of their situation. Using the assimilation model allowed the study to map the process of coming to terms with a problematic experience in a systematic way. Family members support needs could be addressed by family members having time alone with healthcare teams, support groups, and additional resources such as leaflets. Such a support pathway could be co-designed with family members. Conclusion: Family members have support needs that could be addressed with the development of a support pathway within renal services