Preparing for a Child’s End of Life: Parent Perspectives

OBJECTIVE Feeling prepared for a child’s end of life (EOL) may help to alleviate parents’ psychological symptoms following their child’s death from cancer. However, most parents report feeling unprepared, and data on how parents define feeling prepared for their child’s EOL remain limited. In this study, we explored how parents define “preparing” for a child’s EOL and identified barriers and facilitators to feeling prepared. METHODS We conducted a qualitative descriptive study using semistructured interviews with parents whose child died of cancer in the past 4 years. Interviews were audio-recorded, transcribed verbatim, and synthesized using thematic analysis. RESULTS Among the 15 bereaved parents interviewed, 86% were non-Hispanic white mothers. Parents viewed preparing for their child’s EOL as a combination of internal and external actions and identified that external prompts, such as clinician communication about impending death, were often necessary triggers for preparatory work. Parents identified 3 key barriers to feeling prepared: clinicians’ difficulties discussing EOL and the impact on patient care, child death as antithetical to the natural life order, and isolation and limited support following a transition to EOL care. Parents also identified 3 facilitators: guidance in EOL decision-making and care, peer support, and engaging the dying child in decision-making and planning when appropriate. CONCLUSION Parental preparation for EOL is often prompted by external factors, resulting in both internal and external actions. Parents identified specific factors that contributed to becoming prepared. These data provide a foundation for the development of targeted interventions grounded in the reality of bereaved parents.