Talia Gutman, Camilla S. Hanson, Sarah Bernays, Jonathan C. Craig, Aditi Sinha, Allison Dart, Allison A. Eddy, Debbie S. Gipson, Detlef Bockenhauer, Hui-Kim Yap, Jaap Groothoff, Michael Zappitelli, Nicholas J.A. Webb, Stephen I. Alexander, Stuart L. Goldstein, Susan Furth, Susan Samuel, Tom Blydt-Hansen, Janis Dionne, Mini Michael, Scott E. Wenderfer, Wolfgang C. Winkelmayer, Helen Currier, Steven McTaggart, Amanda Walker, Angelique F. Ralph, Angela Ju, Laura J. James, Simon Carter, Allison Tong

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. Qualitative study. 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. Transcripts were analyzed thematically. 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). 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. 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.