T GUTMAN1,2, C HANSON1,2, S BERNAYS1, J CRAIG1,2, A SINHA3, A DART4, A EDDY5, D GIPSON6, D BOCKENHAUER7, H YAP8, J GROOTHOFF9, M ZAPPITELLI10, N WEBB11, S ALEXANDER2, S GOLDSTEIN12, S FURTH13, S SAMUEL14, T BLYDT-HANSEN5, J DIONNE5, M MICHAEL15, S WENDERFER15, W WINKELMAYER16, H CURRIER15, S MCTAGGART17, A WALKER18, A RALPH1,2, A JU1,2, L JAMES1,2, S CARTER2, A TONG1,2
1School of Public Health, The University of Sydney, Sydney, Australia, 2Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, Australia, 3Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India, 4Department of Pediatrics and Child Health, The Children’s Hospital Research Institute of Manitoba, University of Manitoba, Manitoba, Canada, 5Department of Pediatrics, BC Children’s Hospital and University of British Columbia, Vancouver, Canada, 6Division of Nephrology, Department of Pediatrics, University of Michigan, Ann Arbor, United States, 7UCL Centre for Nephrology and Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom, 8Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, , Singapore, 9Department of Pediatric Nephrology, Emma Children’s Hospital AMC Academic Medical Center, Amsterdam, The Netherlands, 10Department of Pediatrics, Division of Nephrology, Toronto Hospital for Sick Children, University of Toronto, Toronto, Canada, 11Department of Pediatric Nephrology and NIHR Manchester Clinical Research Facility, University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children’s Hospital, Manchester, Manchester, United Kingdom, 12Division of Nephrology and Hypertension, Cincinnati Children’s Hospital Medical Center, Cincinnati, United States, 13Departments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, United States, 14Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Canada, 15Renal Section, Department of Pediatrics, Texas Children’s Hospital, Baylor College of Medicine, Houston, United States, 16Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, United States, 17Child and Adolescent Renal Service, Lady Cilento Children’s Hospital, Brisbane, Australia, 18Department of Nephrology, Royal Children’s Hospital Melbourne, Department of Paediatrics, University of Melbourne, and Murdoch Children’s Research Institute, Melbourne, Australia
Aim: To describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision-making.
Background: Effective communication and shared decision-making improves quality of care and patient outcomes, but can be particularly challenging in pediatric chronic disease as children depend on their parents and clinicians to manage complex healthcare and developmental needs.
Methods: Children with CKD (n=34) and parents (n=62) from six centers across six cities in Australia, Canada and the United States participated in 16 focus groups. Transcripts were analysed thematically.
Results: We identified four themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, inadequacy as technicians); (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, empowering participation in children); (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, struggling to voice own preferences); and (4) managing child’s involvement (respecting child’s expertise, attributing ‘risky’ behaviors to rebellion, protecting children from illness burden).
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 them to become partners in decision-making and prepare them for adulthood. Collaborative and informed decision-making that addresses the priorities and concerns of both children and parents is needed.
Talia Gutman is a Research Officer and PhD candidate at the Sydney School of Public Health, The University of Sydney, Australia. Her primary research interest is in the area of patient and caregiver involvement in research in chronic kidney disease. She has conducted international qualitative studies on patient involvement in research in chronic kidney disease and has experience in interviews, focus groups, nominal group technique, and survey research to elicit stakeholder perspectives with the goal of informing patient-centred programs and interventions.