EOLP-01. PROPOSED FRAMEWORK FOR A PILOT MULTIDISCIPLINARY BEREAVEMENT FOLLOW-UP AND BRAIN AUTOPSY REVIEW FOR BEREAVED CAREGIVERS IN PEDIATRIC NEURO-ONCOLOGY

Abstract INTRODUCTION Brain tumors remain the leading cause of cancer-related death in children. The death of a child is distressing for caregivers and often associated with negative psychosocial outcomes. Bereaved caregivers frequently desire ongoing support after their child’s death. At our institution, brain autopsies with the option for tissue donation to research are offered to all families after the death of a child. Specific follow-up conducted to date and review of autopsy results have varied widely. We propose a pilot study to (1) evaluate feasibility of a comprehensive, multidisciplinary bereavement follow-up meeting with autopsy results review and grief supports for bereaved caregivers in pediatric neuro-oncology at Nationwide Children’s Hospital and (2) assess caregiver and provider perceptions regarding this follow-up meeting using mixed-methods design. METHODS/DESIGN Bereaved caregivers of children with a brain tumor who died and underwent brain autopsy through our institutional tissue donation protocol will be offered a follow-up meeting after their child’s death. The follow-up meeting will test an established PICU bereavement framework in the pediatric neuro-oncology setting with the addition of brain autopsy results review. Meetings will include caregivers and providers from neuro-oncology, palliative care, and psychosocial team (e.g., psychologist, social worker, chaplain). Caregivers will complete a Likert-scale questionnaire followed by a semi-structured interview via telephone. The goal is to conduct 7-10 meetings. Providers will participate in a focus group to provide feedback. Interviews and the focus group will be recorded, transcribed, and analyzed qualitatively. Concepts to be explored include perceived need for follow up; overall experience; satisfaction with structure, modality, and content; and perceived benefit and meaning of autopsy review. LONG-TERM GOAL To develop, evaluate, and formalize a comprehensive multidisciplinary bereavement follow-up meeting, guided by caregiver and provider feedback, that can be expanded to other institutions and become a “standard of care” for bereaved caregivers in pediatric neuro-oncology.