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

Autor: Zhang Y; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia., Gutman T; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia., Tong A; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia., Craig JC; College of Medicine and Public Health, Flinders University, Adelaide, Sydney, Australia., Sinha A; Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India., Dart A; Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Canada., Eddy AA; Department of Pediatrics, BC Children's Hospital Research Institute and University of British Columbia, Vancouver, Canada., Gipson DS; Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA., Bockenhauer D; Department of Renal Medicine and Great Ormond Street Hospital for Children, UCL, NHS Foundation Trust, London, UK., Yap HK; Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore., Groothoff J; Department of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, The Netherlands., Zappitelli M; Department of Pediatrics, Division of Nephrology, Toronto Hospital for Sick Children, University of Toronto, Toronto, Canada., J A Webb N; Department of Pediatric Nephrology and NIHR Manchester Clinical Research Facility, University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children's Hospital, Manchester, UK., Alexander SI; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia., Furth S; Departments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA., Samuel S; Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Canada., Blydt-Hansen TD; Department of Pediatrics, BC Children's Hospital Research Institute and University of British Columbia, Vancouver, Canada., Dionne J; Department of Pediatrics, BC Children's Hospital Research Institute and University of British Columbia, Vancouver, Canada., Michael M; Renal Section, Department of Pediatrics, Texas Children's Hospital/Baylor College of Medicine, Houston, TX, USA., Wenderfer SE; Renal Section, Department of Pediatrics, Texas Children's Hospital/Baylor College of Medicine, Houston, TX, USA., Winkelmayer WC; Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX, USA., McTaggart S; Child and Adolescent Renal Service, Queensland Children's Hospital, Queensland, Australia., Walker A; Department of Nephrology, Royal Children's Hospital Melbourne, Department of Paediatrics, University of Melbourne, and Murdoch Children's Research Institute, Parkville, Victoria, Australia., Zimmerman CT; Renal Section, Department of Pediatrics, Texas Children's Hospital/Baylor College of Medicine, Houston, TX, USA., Ralph AF; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia., Ju A; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia., James LJ; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia., Hanson CS; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. camilla.s.hanson@gmail.com.; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. camilla.s.hanson@gmail.com.
Jazyk: angličtina
Zdroj: Pediatric nephrology (Berlin, Germany) [Pediatr Nephrol] 2023 Jan; Vol. 38 (1), pp. 249-260. Date of Electronic Publication: 2022 Apr 26.
DOI: 10.1007/s00467-022-05551-z
Abstrakt: 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.
(© 2022. The Author(s), under exclusive licence to International Pediatric Nephrology Association.)
Databáze: MEDLINE
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