Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease : A focus group study

Journal article

Zhang, Yifan, Gutman, Talia, Tong, Allison, Craig, Jonathan C., Sinha, Aditi, Dart, Allison, Eddy, Allison A., Gipson, Debbie S., Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Webb, Nicholas J. A., Alexander, Stephen I., Furth, Susan, Samuel, Susan, Blydt-Hansen, Tom D., Dionne, Janis, Michael, Mini, ... Hanson, Camilla S.. (2023). Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease : A focus group study. Pediatric Nephrology. 38(1), pp. 249-260. https://doi.org/10.1007/s00467-022-05551-z
AuthorsZhang, Yifan, Gutman, Talia, Tong, Allison, Craig, Jonathan C., Sinha, Aditi, Dart, Allison, Eddy, Allison A., Gipson, Debbie S., Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Webb, Nicholas J. A., Alexander, Stephen I., Furth, Susan, Samuel, Susan, Blydt-Hansen, Tom D., Dionne, Janis, Michael, Mini, Wenderfer, Scott E., Winkelmayer, Wolfgang C., McTaggart, Steven, Walker, Amanda, Zimmerman, Courtney T., Ralph, Angelique F., Ju, Angela, James, Laura J. and Hanson, Camilla S.
Abstract

Background
Children with chronic kidney disease (CKD) generally have worse educational and psychosocial outcomes compared with their healthy peers. This can impair their ability to manage their treatment, which in turn can have long-term health consequences through to adulthood. We attempted to capture the experiences of children with CKD and to describe the perspectives of their parents and caregivers on access to educational and psychosocial support.

Methods
Children with CKD (n = 34) and their caregivers (n = 62) were sampled via focus groups from pediatric hospitals in Australia, Canada, and the USA. Sixteen focus groups were convened and the transcripts were analyzed thematically.

Results
We identified four themes: disruption to self-esteem and identity (emotional turmoil of adolescence, wrestling with the sick self, powerlessness to alleviate child’s suffering, balancing normality and protection); disadvantaged by lack of empathy and acceptance (alienated by ignorance, bearing the burden alone); a hidden and inaccessible support system (excluded from formal psychological support, falling behind due to being denied special considerations); and building resilience (finding partners in the journey, moving towards acceptance of the illness, re-establishing childhood).

Conclusions
Children with CKD and their caregivers encountered many barriers in accessing psychosocial and educational support and felt extremely disempowered and isolated as a consequence. Improved availability and access to psychosocial and educational interventions are needed to improve the wellbeing and educational advancement of children with CKD.

Year2023
JournalPediatric Nephrology
Journal citation38 (1), pp. 249-260
PublisherSpringer Nature
ISSN0931-041X
Digital Object Identifier (DOI)https://doi.org/10.1007/s00467-022-05551-z
PubMed ID35471462
Scopus EID2-s2.0-85128948558
Page range249-260
Publisher's version
License
All rights reserved
File Access Level
Controlled
Output statusPublished
Publication dates
Online26 Apr 2022
Publication process dates
Accepted21 Mar 2022
Deposited09 May 2025
Additional information

© The Author(s), under exclusive licence to International Pediatric Nephrology Association 2022.

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