Abstract Introduction Bereaved caregivers frequently desire ongoing support after their child’s death. Brain autopsy with the option for tissue donation to research is offered to all families after the death of a child to a brain tumor at our institution. Follow-up meetings with multidisciplinary neuro-oncology team-members are offered to discuss autopsy results with caregivers, assess coping with grief, and provide bereavement supports. However, follow-up has been informal and variable to date. Methods We designed a pilot feasibility study to explore a standardized, multidisciplinary follow-up meeting with brain autopsy review for caregivers post-death of a child with a brain tumor. Caregiver perceptions regarding the meeting will be evaluated via Likert-scale surveys followed by semi-structured interviews. Questions assess 7 concepts: (1) perceived need for follow-up, (2) overall experience with follow-up meeting, (3) satisfaction with structure, (4) modality of meeting (i.e. virtual, in-person, telephone), (5) content, (6) perceived benefit of autopsy review, (7) perceived meaning. Results Preliminary results from the first three bereaved caregivers who have undergone follow-up meetings, survey, and interviews at the time of abstract submission reveal that caregivers found these meetings to be beneficial and felt meetings should be offered to families, 1-2 months after the death of their child, depending on family’s readiness. Caregivers reported improved understanding of the extent of their child’s disease, particularly through review of gross and microscopic imaging from brain autopsy, emphasizing the “resiliency” their children demonstrated throughout their illness journey, and providing closure to caregivers with reassurance no further interventions could have been offered. Additional common themes were appreciation for the opportunity to reconnect with the team and ask questions about treatment decisions, as well as gratitude for legacy-building through brain/tumor tissue contribution to research. More comprehensive qualitative and quantitative analyses from this growing cohort of caregivers will be presented at the pSNO meeting.
Wright et al. (Fri,) studied this question.