Experiences of biographical disruption at critical moments in the lives of young adults with childhood renal failure : a comparative study of adults aged 16-30 with prepubertal and postpubertal onset ERF

摘要

Chronic illness experience in emerging adulthood is a relatively neglected field in medical sociology and youth transition. This study uses survey data from young adult patients (N=296, aged 16-30 years) on renal replacement therapies (dialysis and transplantation) and interview data from patients, first diagnosed aged 0-19 years (N=40) and their parents (N=20), to explore living with renal failure in young adulthood. Renal failure (ERF) is relatively invisible in society and thus little known and understood. It is rare in children and normally invisible, making disclosure of illness status particularly difficult in young adulthood. The young adults in the study were living with a discreditable condition whose embodiment was highly salient, at a time in their lives when it was arguably more important than at any other, that they appeared healthy and normal. Grounded theory informed qualitative data gathering and data analysis, and built on concepts derived from the data and relevant literature. Quantitative survey data were used to contextualise the qualitative data, and demonstrate that the study participants were reasonably representative of all young people of the same age with the same condition. It is already recognised that the age at which someone becomes chronically ill influences their experience of their illness. For the first time, this study shows that the social lives of young adults diagnosed before puberty were experienced differently from those diagnosed after puberty, and differently again from those diagnosed in mature adulthood. The findings show that those who were ill very early in the life course tended to achieve markers of adulthood later than those who were ill after puberty. However, it was socioeconomic and family resources that influenced the trajectory and adult destinations of emerging adults with chronic illness as much as ill health itself; unless the latter made participation in adult social life completely unattainable, temporarily or permanently.