Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study
verfasst von:
Yifan Zhang, Talia Gutman, Allison Tong, Jonathan C. Craig, Aditi Sinha, Allison Dart, Allison A. Eddy, Debbie S. Gipson, Detlef Bockenhauer, Hui-Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas J.A.Webb, Stephen I. Alexander, Susan Furth, Susan Samuel, Tom D. Blydt-Hansen, Janis Dionne, Mini Michael, Scott E. Wenderfer, Wolfgang C. Winkelmayer, Steven McTaggart, Amanda Walker, Cortney T. Zimmerman, Angelique F. Ralph, Angela Ju, Laura J. James, Camilla S. Hanson
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.
Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study
verfasst von
Yifan Zhang Talia Gutman Allison Tong Jonathan C. Craig Aditi Sinha Allison Dart Allison A. Eddy Debbie S. Gipson Detlef Bockenhauer Hui-Kim Yap Jaap Groothoff Michael Zappitelli Nicholas J.A.Webb Stephen I. Alexander Susan Furth Susan Samuel Tom D. Blydt-Hansen Janis Dionne Mini Michael Scott E. Wenderfer Wolfgang C. Winkelmayer Steven McTaggart Amanda Walker Cortney T. Zimmerman Angelique F. Ralph Angela Ju Laura J. James Camilla S. Hanson
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