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

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.

Doing ‘technological time’ in a pediatric hemodialysis unit: An ethnography of children

“…Not surprisingly, the findings of some studies (Goldstein et al, 2006;McKenna et al, 2006;Nicholas et al, 2011;Snethen et. al., 2001;Snethen et al, 2004, Waters 2008 suggest that maintaining educational progress and participating in family life and domestic routines, recreational and play activities, and peer relations are difficult for these children.…”

“…Although the researchers adjusted for and/or analyzed these variables, only Snethen et al (2004) discussed how children's characteristics were related to the findings. Finally, only McKenna et al (2006) and Nicholas et al (2011) involved children with ESRD who were currently undergoing treatments in a Canadian hospital.…”

“…As described above, studies have identified negative effects of hemodialysis regimens on school attendance, family life and domestic routines, play and recreational activities, and peer relationships (Nicholas et al, 2011). Goldstein et al (2006) compared self-reports and parent reports, using a health related quality of life assessment instrument of physical and psychosocial health (emotional, social, and school functioning), among 131 healthy children and 85 children between 5 to 18 years of age with transplants, on peritoneal dialysis, or on hemodialysis.…”

“…Because of the time spent in the unit, children receiving hemodialysis experience reduced opportunities for domestic routines and family life (Nicholas et al, 2011) and family time in the unit may mitigate some of this lack. Increased sensitivity to the social, comfort and coping needs of the family members who also spend a significant amount of time in the unit would assist in creating a place that recognizes the multiple needs of children and their families.…”

Saying the Word: Voice and Silence in an Autoethnography About Chronic Illness

“…Moreover, one learns how to tell stories from the stories one hears. Not many stories of the childhood experience of kidney disease are available (Darbyshire, Oster and Henning 2006;Nicholas, Picone and Selkirk 2011;Richards 2008), so I had little to use for my own story growing up.…”