Talia Gutman1, Camilla S Hanson2, Sarah Bernays3, Jonathan C Craig2, Aditi Sinha4, Allison Dart5, Allison A Eddy6, Debbie S Gipson7, Detlef Bockenhauer8, Hui-Kim Yap9, Jaap Groothoff10, Michael Zappitelli11, Nicholas J A Webb12, Stephen I Alexander13, Stuart L Goldstein14, Susan Furth15, Susan Samuel16, Tom Blydt-Hansen6, Janis Dionne6, Mini Michael17, Scott E Wenderfer17, Wolfgang C Winkelmayer18, Helen Currier17, Steven McTaggart19, Amanda Walker20, Angelique F Ralph2, Angela Ju2, Laura J James2, Simon Carter13, Allison Tong2. 1. Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. Electronic address: talia.gutman@sydney.edu.au. 2. Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3. Sydney School of Public Health, The University of Sydney, Sydney. 4. Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India. 5. Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg. 6. Department of Pediatrics, BC Children's Hospital and University of British Columbia, Vancouver, Canada. 7. Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, MI. 8. UCL Centre for Nephrology and Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 9. Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore. 10. Department of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, the Netherlands. 11. Division of Nephrology, Department of Pediatrics, Toronto Hospital for Sick Children, University of Toronto, Toronto, Canada. 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, United Kingdom. 13. Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 14. Division of Nephrology and Hypertension, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. 15. Departments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children's Hospital of Philadelphia, Philadelphia, PA. 16. Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Canada. 17. Renal Section, Department of Pediatrics, Texas Children's Hospital/Baylor College of Medicine, Houston, TX. 18. Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX. 19. Child and Adolescent Renal Service, Lady Cilento Children's Hospital, Queensland. 20. Department of Nephrology, Royal Children's Hospital Melbourne, Department of Paediatrics, University of Melbourne, and Murdoch Children's Research Institute, Parkville, Victoria, Australia.
Abstract
BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden). LIMITATIONS: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.
BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden). LIMITATIONS: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.
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