National survey of sibling support services in children’s hospitals

Abstract

Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents’ desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child’s serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children’s hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care.