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

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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.

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Author information

Authors and Affiliations

  1. Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, NSW, Australia

    Yifan Zhang, Talia Gutman, Allison Tong, Stephen I. Alexander, Angelique F. Ralph, Angela Ju, Laura J. James & Camilla S. Hanson

  2. Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia

    Talia Gutman, Allison Tong, Angelique F. Ralph, Angela Ju, Laura J. James & Camilla S. Hanson

  3. College of Medicine and Public Health, Flinders University, Adelaide, Sydney, Australia

    Jonathan C. Craig

  4. Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India

    Aditi Sinha

  5. Department of Pediatrics and Child Health, The Children’s Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Canada

    Allison Dart

  6. Department of Pediatrics, BC Children’s Hospital Research Institute and University of British Columbia, Vancouver, Canada

    Allison A. Eddy, Tom D. Blydt-Hansen & Janis Dionne

  7. Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MI, USA

    Debbie S. Gipson

  8. Department of Renal Medicine and Great Ormond Street Hospital for Children, UCL, NHS Foundation Trust, London, UK

    Detlef Bockenhauer

  9. Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore

    Hui-Kim Yap

  10. Department of Pediatric Nephrology, Emma Children’s Hospital AMC Academic Medical Center, Amsterdam, The Netherlands

    Jaap Groothoff

  11. Department of Pediatrics, Division of Nephrology, Toronto Hospital for Sick Children, University of Toronto, Toronto, Canada

    Michael Zappitelli

  12. 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

    Nicholas J.A.Webb

  13. Departments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Susan Furth

  14. Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Canada

    Susan Samuel

  15. Renal Section, Department of Pediatrics, Texas Children’s Hospital/Baylor College of Medicine, Houston, TX, USA

    Mini Michael, Scott E. Wenderfer & Cortney T. Zimmerman

  16. Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX, USA

    Wolfgang C. Winkelmayer

  17. Child and Adolescent Renal Service, Queensland Children’s Hospital, Queensland, Australia

    Steven McTaggart

  18. Department of Nephrology, Royal Children’s Hospital Melbourne, Department of Paediatrics, University of Melbourne, and Murdoch Children’s Research Institute, Parkville, Victoria, Australia

    Amanda Walker

Authors
  1. Yifan Zhang
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  2. Talia Gutman
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  3. Allison Tong
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  4. Jonathan C. Craig
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  5. Aditi Sinha
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  6. Allison Dart
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  7. Allison A. Eddy
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  8. Debbie S. Gipson
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  9. Detlef Bockenhauer
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  10. Hui-Kim Yap
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  11. Jaap Groothoff
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  12. Michael Zappitelli
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  13. Nicholas J.A.Webb
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  14. Stephen I. Alexander
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  15. Susan Furth
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  16. Susan Samuel
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  17. Tom D. Blydt-Hansen
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  18. Janis Dionne
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  19. Mini Michael
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  20. Scott E. Wenderfer
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  21. Wolfgang C. Winkelmayer
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  22. Steven McTaggart
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  23. Amanda Walker
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  24. Cortney T. Zimmerman
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  25. Angelique F. Ralph
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  26. Angela Ju
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  27. Laura J. James
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  28. Camilla S. Hanson
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Corresponding author

Correspondence to Camilla S. Hanson.

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Graphical Abstract (PPTX 45 KB)

Appendices

Appendix A Participating Sites and Institutional Review Boards

British Columbia Children’s Hospital, The University of British Columbia Research Ethics Board, Vancouver, Canada.

Alberta Children’s Hospital, The University of Calgary Research Ethics Board, Calgary, Canada.

Texas Children’s Hospital, The Institutional Review Board for Baylor College of Medicine and Affiliated Hospital, Houston, United States.

The Children’s Hospital at Westmead, The Sydney Children’s Hospital Network Human Research Ethics Committee, Sydney, Australia.

The Royal Children’s Hospital, The Melbourne Children’s Campus Research Ethics and Governance, Melbourne, Australia.

Queensland Children’s Hospital, The Children’s Health Queensland Hospital and Health Service Research Governance, Brisbane, Australia.

Appendix B Question guide

Children

We want to know what it’s like for you to have kidney problems.

  • Can you tell us a little bit about your kidney problems (how long, what treatment you have?)

  • What is it like to have kidney problems?

  • What are the hardest things about having kidney disease?

  • ○ How has it impacted your mental health/education? How important are these outcomes to you?

  • ○ How do you deal with these challenges? What types of support have you needed/do you need?

Parents/Caregivers

We would like to hear about your experience caring for a child with CKD.

  • How did you first find out that your child had kidney disease? How did you react/feel?

  • How has the kidney disease/dialysis/kidney transplant changed your life and your child’s life?

  • What is the most challenging thing about caring for a child with kidney disease?

  • ○ How has it impacted your child’s mental health/education? How important are these outcomes for your child?

  • ○ How could these outcomes be better addressed? What types of support has your child needed/does your child need?

  • ○ How do you deal with these challenges? What types of support has your child needed/does your child need?

  • ○ How could these outcomes be better addressed?

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Zhang, Y., Gutman, T., Tong, A. et al. Child and caregiver perspectives on access to psychosocial and educational support in pediatric chronic kidney disease: a focus group study. Pediatr Nephrol 38, 249–260 (2023). https://doi.org/10.1007/s00467-022-05551-z

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  • DOI: https://doi.org/10.1007/s00467-022-05551-z

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