Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit

BACKGROUND: Advance care planning is a strategy to define goals and preferences for future care and treatment aligned to patient values. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT) provides a holistic, family-oriented approach to involve families of children with life-limiting conditions and their clinicians in ACP, starting early in disease trajectories. This study explores how children with life-limiting conditions, and their parents and clinicians experience ACP conversations based on IMPACT. METHODS: A multicenter, qualitative interview study using inductive thematic analysis was conducted. A total of 27 cases of children with life-limiting conditions were included in the study from February 2019 to December 2019. Interviews with 18 clinicians, 24 mothers, 8 fathers and 3 children were conducted. RESULTS: Clinicians and families of children with life-limiting conditions valued to be involved in ACP conversations based on IMPACT. Although it confronted both parents and clinicians with the impact of caring for a child with a life-limiting condition, sharing the family's narrative resulted in a stronger relation between families and clinicians. This relation was experienced as a good foundation to share values and preferences for future care and treatment. However, a shared understanding of goals of future care, and treatment based on the conversation was experienced to a limited extent. CONCLUSIONS: ACP conversations based on IMPACT facilitated family-centered conversations, and were valued by families of children with life-limiting conditions and their clinicians. The meaning of the family's narrative in relation to goals and preferences for future care and treatment needs ongoing conversations and coaching on the job of clinicians initiating those conversations.