Improving Support for Children Facing Serious Illness or Death of a Loved Adult (FR408A)

Abstract

•Explore barriers that hinder adult-focused palliative care team support for children affected by the serious illness or death of a loved adult.•Identify how developmental changes in child perspectives of illness and death influence family discussions and coping.•Describe the impact of the “Coping for Kids” program on palliative care team member comfort exploring the child experience when a loved adult is serious ill or dying. The illness and death of loved ones are stressful for children, yet mechanisms to support children during a loved adult's illness are often lacking. We conducted a quality improvement initiative focused on inpatient palliative care team members (PCTM) to: (1) improve recognition of children affected by serious illness or death of a loved adult, and (2) increase provider comfort exploring and supporting the child experience and coping. Small group interviews and a focus group with PCTM illuminated knowledge gaps and barriers. A child and family support program, “Coping for Kids,” was implemented. The program included: age-specific handouts, provider “tip sheet”, one-time educational sessions for PCTM and inpatient social workers (SW), and a resource library of age-appropriate books for families and children. Pre- and post-implementation surveys assessed program efficacy. Perceived PCTM barriers included limited knowledge and training regarding child coping, uncertainty providing guidance, lack of resources, and time constraints. Fifty-one pre- and 33 post-implementation surveys were completed. Confidence identifying affected children was “somewhat”-“very” comfortable for > 90% pre/post-implementation. Confidence coaching families was “somewhat”-“very” comfortable for 75% pre- and 72% post-implementation. 30% identified “all team members equally appropriate” to provide coaching. Family comfort talking with children was assessed “frequently”-“always” in 46% pre- and 55% post-implementation. Implementation increased resource access 2-to-4-fold. Over 85% of respondents found the tip sheet helpful. PCTM reported only modest improvements in the top 5 barriers, particularly for "unsure what guidance is helpful". Comparatively more robust improvements were reported in all 5 barriers by SW. “Coping for Kids” shows promise to improve recognition and support of children affected by serious adult illness or death. Despite improved access to resources, ongoing care team discomfort persists. Opportunities exist for continued education, identification of needs, and program refinement.