The role of the body in end-stage kidney disease in young adults: Gender, peer and intimate relationships

Abstract

Objectives To understand how the physical body, and changes in the physical body, influence peer and intimate relationships and parenting in young adults on renal replacement therapies (RRT). Methods Qualitative interview data from 40 young adults aged 16-30 years with end-stage kidney disease (ESKD), first diagnosed aged 0-19 years, were analysed using modified grounded theory. Findings Alternating modalities of RRT had a 'yo-yo' effect on the bodies of interviewees, repeatedly reconstructing them as either 'transplanted' bodies, often initially obese, or as 'dialysis' bodies', often underweight. Invisible somatic changes had a major impact on gendered social identity, making intimate social relationships and parenthood problematic. Prepubertal onset interviewees were generally less successful in forming partnerships than those with postpubertal onset; and interviewees on dialysis were likely to postpone partnering until they were transplanted. Social networks were essential for finding a partner, but male interviewees had fewer networks than females. Parenthood was particularly challenging for female interviewees. Conclusions In ESKD, life-saving RRT brings major changes to the body. These adversely affect social relationships and family formation during the crucial period of early adulthood. Effects vary according to age of onset, RRT modality, and gender, with those who were ill before puberty and those on dialysis worst affected.