Mentor Name: Emily Johnston

Significant gaps remain in pediatric end-of-life care, particularly in addressing the urgent, real-time challenges families face in the final days, hours, and immediate aftermath of a child’s passing. While extensive research has focused on long-term bereavement support, less attention has been given to the immediate needs of families during this critical period. Managing a child’s symptoms, making last-minute medical decisions, receiving clear and compassionate communication from healthcare providers, and handling financial and logistical concerns—such as funeral planning—are among the most pressing challenges. Additionally, spiritual and cultural considerations, as well as the psychological impact on parents, siblings, and extended family members, shape the end-of-life experience. This study will involve a secondary data analysis of over 50 bereaved parent interviews to identify key themes related to immediate end-of-life challenges. These interviews include perspectives from caregivers of diverse racial and ethnic backgrounds, allowing for a comprehensive understanding of family experiences. Through qualitative coding and thematic analysis, the study will: identify patterns in the most urgent end-of-life challenges families face, examine existing support services that helped families navigate this period, and highlight gaps in current end-of-life care and opportunities for intervention. Findings from this study will improve efforts to enhance pediatric end-of-life care by identifying specific areas where hospitals, hospice programs, and palliative care teams can provide better immediate support. By analyzing caregiver perspectives and integrating them with existing research, this project will contribute to the development of targeted interventions that improve the quality and responsiveness of end-of-life care for children and their families. Through the POST Program, this research will advance understanding of pediatric palliative care while providing valuable experience in qualitative research and health services evaluation.