Young-Adulthood Development in the Lived Experience of Persons With Kidney Failure: Challenges of Youth, Disability, and Transition

Abstract

This study examined dimensions of young-adulthood development in lived experience reported by young persons (19 women, 18 men) with the disabling condition of kidney failure requiring chronic dialysis or kidney transplantation. In semistructured phone interviews, participants (ages 23–37) described their family/living situation, employment and community activity, current situation, and experience. Participants' qualitative responses about “the way you see things, do things, feel about things” and “how you feel about yourself” were examined to identify themes. Limited achievement of proposed “successful” dimensions of young adulthood characterized the study cohort, based on indicators included in the interview. In qualitative data, the theme of perceived stigma and spoiled identity (Goffman, 1963) was reflected in comments offered by participants regarding their self-confidence and motivation to pursue goals. A second theme in participants' qualitative responses was a sense of isolation from age peers who shared their condition, and participants expressed frustration around having an age-inappropriate condition (“why me?”). Perceived stigma and spoiled identity impact social ties and life goals and are understudied influences in the life course trajectory of young persons with kidney failure and the challenges inherent in navigating health status and developmental life course transitions.

Citation

Kutner, N.G. and Bowles, T. (2023), "Young-Adulthood Development in the Lived Experience of Persons With Kidney Failure: Challenges of Youth, Disability, and Transition", Dillaway, H.E., Shandra, C.L. and Bender, A.A. (Ed.) Disabilities and the Life Course (Research in Social Science and Disability, Vol. 14), Emerald Publishing Limited, Leeds, pp. 69-87. https://doi.org/10.1108/S1479-354720230000014005