Family partnership and community engagement to support AYA adaptation in serious pediatric illness

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Nearly 200,000 children and adolescents in the US face the challenge of having a brother or sister with a serious, life-limiting illness and many will become bereaved. Siblings face particular physical, psychological, and social risks including anxiety, depression, substance abuse, academic performance concerns, and emotional distress. These risks increase when the seriously ill child’s life is at great risk or when illness management strains family time and routines. Adolescent siblings in particular may opt to engage in risky behavior, withdraw from peer and family relationships, and decline sharing concerns with parents whom they perceive already overburdened. Risks for the family unit may also increase when social determinants within the family social ecology exacerbate risk or inhibit sources of resilience, perpetuating disparities. To develop family-focused interventions to support these siblings during pediatric palliative care and reduce their psychosocial and health concerns, we need to determine the impact of serious illness and understand the relationships among the demands families face, how they communicate, and how they adapt. While family communication is critical to everyday family functioning and is linked to child adaptation, there is a critical gap in understanding its impact on sibling adaptation in pediatric palliative care. Despite the significance of family communication, few interventions exist to support family communication. Thus, the specific aims of this study are: to examine the relationship among family demands, family communication, and adaptation among siblings of seriously ill children; to identify family communication needs, challenges, and preferences among siblings and parents of seriously ill children; and to develop a family-based intervention to improve adaptation of adolescents whose siblings are seriously ill. This study aligns with NINR priorities of developing the science of equitable palliative care and caregiving and will provide foundational data for a larger study to test a family- focused intervention. Understanding the dynamic nature of family communication in serious pediatric illness, from perspectives of siblings and parents, provides opportunities to prevent their long-term distress.