Zhang, Yifan;
Gutman, Talia;
Tong, Allison;
Craig, Jonathan C;
Sinha, Aditi;
Dart, Allison;
Eddy, Allison A;
... Hanson, Camilla S; + view all
(2023)
Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study.
Pediatric Nephrology
, 38
pp. 249-260.
10.1007/s00467-022-05551-z.
Preview |
Text
Bockenhauer_Song_Kids_Manuscript_Submission - Clean Copy.pdf Download (635kB) | Preview |
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. A higher resolution version of the Graphical abstract is available as Supplementary information.
| Type: | Article |
|---|---|
| Title: | Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study |
| Location: | Germany |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1007/s00467-022-05551-z |
| Publisher version: | https://doi.org/10.1007/s00467-022-05551-z |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | Adolescence, Chronic kidney disease, Education, Mental health, Psychosocial |
| UCL classification: | UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Renal Medicine UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine |
| URI: | https://discovery.ucl.ac.uk/id/eprint/10150004 |
Archive Staff Only
 |
View Item |
