Experiences and perspectives of adolescents and young adults with advanced CKD

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dc.contributor.authorTong, A.
dc.contributor.authorHenning, P.
dc.contributor.authorWong, G.
dc.contributor.authorMcTaggart, S.
dc.contributor.authorMackie, F.
dc.contributor.authorCarroll, R.
dc.contributor.authorCraig, J.
dc.date.issued2013
dc.description.abstract<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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).<h4>Conclusions</h4>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.
dc.description.statementofresponsibilityAllison Tong, Paul Henning, Germaine Wong, Steve McTaggart, Fiona Mackie, Robert P. Carroll, Jonathan C. Craig
dc.identifier.citationAmerican Journal of Kidney Diseases, 2013; 61(3):375-384
dc.identifier.doi10.1053/j.ajkd.2012.09.024
dc.identifier.issn0272-6386
dc.identifier.issn1523-6838
dc.identifier.orcidCarroll, R. [0000-0002-6238-026X]
dc.identifier.urihttp://hdl.handle.net/2440/82353
dc.language.isoen
dc.publisherW B Saunders Co
dc.rights© 2013 National Kidney Foundation, Inc.
dc.source.urihttps://doi.org/10.1053/j.ajkd.2012.09.024
dc.subjectPediatric
dc.subjectadolescent
dc.subjectdialysis
dc.subjectqualitative research
dc.titleExperiences and perspectives of adolescents and young adults with advanced CKD
dc.typeJournal article
pubs.publication-statusPublished

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