title: Experiences and perspectives of adolescents and young adults with advanced CKD.
abstract: BACKGROUND
  Young people with advanced chronic kidney disease experience delayed growth and poor psychosocial outcomes. This study aims to elicit the experiences and perspectives of young people waiting for a kidney transplant.
  
  
  METHODS
  We conducted semistructured interviews with people aged 12-24 years from 6 Australian renal units. Participants also were asked to complete a journal. Interview transcripts and journal entries were analyzed thematically.
  
  
  RESULTS
  27 individuals participated in the study. 5 major themes were identified: inferiority (impaired body image, failing expectations, sick identity, and being a burden), insecurity (contending with prognostic uncertainty, vulnerability, and doubtful future), injustice (deprived of freedom, victimhood, and lost opportunity), resilience (autonomy and empowerment and maturity), and adjustment mentality (self-blame, reserved optimism, focusing on normality, and self-efficacy).
  
  
  CONCLUSIONS
  Young dialysis- and non-dialysis-dependent patients with chronic kidney disease have an impaired sense of self-worth, perceive a precarious future, and feel limited in their physical and psychosocial capacities to have the same potential and opportunity as their healthy peers. Strategies to increase patient autonomy and self-efficacy in treatment management and to manage the emotional burdens of future uncertainties and lifestyle disruptions are needed to protect and promote the health and well-being of young people waiting for a kidney transplant.
authors: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, Sydney, NSW 2145, Australia. allison.tong@sydney.edu.au
authors: Allison
authors: A
authors: Tong
authors: Paul
authors: P
authors: Henning
authors: Germaine
authors: G
authors: Wong
authors: Steve
authors: S
authors: McTaggart
authors: Fiona
authors: F
authors: Mackie
authors: Robert P
authors: RP
authors: Carroll
authors: Jonathan C
authors: JC
authors: Craig
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D051436:Renal Insufficiency, Chronic / Q000523:psychology*; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult