TY - JOUR
T1 - Experiences and perspectives of adolescents and young adults with advanced CKD
AU - Tong, Allison
AU - Henning, P
AU - Wong, Germaine
AU - McTaggart, Steven
AU - Mackie, Fiona
AU - Carroll, Robert
AU - Craig, Jonathan
PY - 2013/3
Y1 - 2013/3
N2 - 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.
AB - 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.
KW - adolescent
KW - dialysis
KW - Pediatric
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=84874116174&partnerID=8YFLogxK
U2 - 10.1053/j.ajkd.2012.09.024
DO - 10.1053/j.ajkd.2012.09.024
M3 - Article
VL - 61
SP - 375
EP - 384
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
SN - 0272-6386
IS - 3
ER -