The Lived Experiences of Children and Adolescents With End-Stage Renal Disease

Author:

Nicholas David B.1,Picone Gail2,Selkirk Enid K.2

Affiliation:

1. University of Calgary, Calgary, Alberta, Canada,

2. Hospital for Sick Children, Toronto, Ontario, Canada

Abstract

Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years. Semistructured interviews were audiotaped, transcribed verbatim, and subjected to content analysis. Participants received a range of ESRD treatments including transplantation and dialysis. Findings indicate that ESRD has a profound impact on children. They described a range of challenges and experiences including not feeling “normal”; developing ESRD knowledge; frequent absence from school; gaining responsibility for ESRD care; relying on family, friends, and health care providers; and adjusting despite adversity. These findings depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency. Implications and recommendations for clinical practice and research are discussed.

Publisher

SAGE Publications

Subject

Public Health, Environmental and Occupational Health

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