End-of-Life Experiences for Children with Complex Chronic Conditions and Their Bereaved Parents: Perspectives on Preparedness (TH340C)

Abstract

•Explain the unique end-of-life care needs of children with complex chronic conditions and their families.•Present findings from a large qualitative study of bereaved parents of children with complex chronic conditions. Children with complex chronic conditions (CCC) are assisted with technology and receive intensive medical care throughout their lives, resulting in unique end-of-life (EOL) needs. Parent perspectives are necessary to improving care, yet little is known about the lived experience of parents of children with CCC. To describe the experience of children with CCC at EOL and their parents. A team of pediatric palliative and critical care experts conducted thematic content analysis of 21 open-response items from a cross-sectional survey of bereaved parents of children with noncancer, noncardiac CCC who received care at Boston Children's Hospital and died between 2006-2015. The team iteratively created a coding structure that incorporated prefigured and emergent codes to identify key themes both within and across response sets. Response items were independently coded by two researchers, with a qualitative research expert providing adjudication and ensuring interpretive consistency. Response rate was 96% (n=110/114). Over 75% of children with CCC were assisted by technology and had congenital, chromosomal, or progressive central nervous system diseases. A broad range of EOL experiences were reported with a primary emergent theme being a desire for improved preparedness for EOL. Parents identified multiple factors associated with overall preparedness including knowledge about symptoms of dying and clinician behaviors that facilitated clear and honest information sharing, flexibility, non-abandonment, follow through, and inclusivity of parents and other clinicians. Parents who felt prepared reported opportunities for meaning-making and family rituals at EOL. Conversely, stress from care coordination and socioeconomic hardships were identified as impediments to EOL preparedness. Bereaved parents identified the importance of improved parent preparedness at EOL. Areas for further exploration include information sharing, care coordination, and clinician behaviors that attend to the unique EOL needs of children with CCC.