TY - JOUR
T1 - Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease
T2 - a focus group study
AU - Zhang, Yifan
AU - Gutman, Talia
AU - Tong, Allison
AU - Craig, Jonathan C.
AU - Sinha, Aditi
AU - Dart, Allison
AU - Eddy, Allison A.
AU - Gipson, Debbie S.
AU - Bockenhauer, Detlef
AU - Yap, Hui-Kim
AU - Groothoff, Jaap
AU - Zappitelli, Michael
AU - J.A.Webb, Nicholas
AU - Alexander, Stephen I.
AU - Furth, Susan
AU - Samuel, Susan
AU - Blydt-Hansen, Tom D.
AU - Dionne, Janis
AU - Michael, Mini
AU - Wenderfer, Scott E.
AU - Winkelmayer, Wolfgang C.
AU - McTaggart, Steven
AU - Walker, Amanda
AU - Zimmerman, Cortney T.
AU - Ralph, Angelique F.
AU - Ju, Angela
AU - James, Laura J.
AU - Hanson, Camilla S.
N1 - Publisher Copyright: © 2022, The Author(s), under exclusive licence to International Pediatric Nephrology Association.
PY - 2023/1
Y1 - 2023/1
N2 - 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. Graphical Abstract: A higher resolution version of the Graphical abstract is available as Supplementary information. [Figure not available: see fulltext.]
AB - 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. Graphical Abstract: A higher resolution version of the Graphical abstract is available as Supplementary information. [Figure not available: see fulltext.]
KW - Adolescence
KW - Chronic kidney disease
KW - Education
KW - Mental health
KW - Psychosocial
UR - http://www.scopus.com/inward/record.url?scp=85128948558&partnerID=8YFLogxK
U2 - https://doi.org/10.1007/s00467-022-05551-z
DO - https://doi.org/10.1007/s00467-022-05551-z
M3 - Article
C2 - 35471462
SN - 0931-041X
VL - 38
SP - 249
EP - 260
JO - Pediatric nephrology (Berlin, Germany)
JF - Pediatric nephrology (Berlin, Germany)
IS - 1
ER -