Creating a Pathway for Psychosocial Support in Siblings of Youth with a Chronic Illness: Findings from an International Summit.

Abstract

Serious childhood illnesses such as cancer affect all family members. Siblings experience strong emotions and disruptions to their routines as families reorganize to confront the disease and manage treatment. Addressing siblings' psychosocial needs is a standard of care in pediatric oncology, but siblings' needs are rarely met because of systematic barriers in our health care system. Thus, we aimed to re-envision sibling care. We used an appreciative inquiry approach to inform systematic screening of siblings' psychosocial risk and unmet needs as a first step toward providing appropriate support. Sibling-focused researchers, clinicians, policymakers, advocates, and families of youth with cancer (N = 29) convened for a 2-day community stakeholder-centered international summit to create a vision for standardizing and optimizing sibling-focused psychosocial screening and assessment as a pathway to care, including crafting a research agenda and articulating best clinical practices. Summit attendees created a detailed framework for best practices in universal sibling psychosocial screening and pathways to support. The framework emphasizes links between hospital- and community-based care. It highlights the need to prepare systems to feasibly and effectively attend to siblings' needs and recommends incorporating siblings into family-based psychosocial screening at cancer diagnosis, systematically conducting sibling-focused psychosocial screening during and after cancer treatment, and connecting siblings with community-based resources. A systematic approach to sibling psychosocial services expands the idea of family-centered care to include siblings and ensures that siblings' needs are adequately recognized and met. This framework was created in the context of cancer but is applicable across illness groups.