SWRK-05. CELEBRATE LIFE HONOR COURAGE: BRAIN TUMOR SPECIFIC BEREAVEMENT PROGRAMMING

摘要

There has been increasing research focused on supporting bereaved families within pediatric oncology. Children with brain tumors and their families report feeling isolated from other oncology patients. To better support the bereaved families in our neuro-oncology (N/O) program, we developed a brain tumor bereavement program. We held a focus group with nine bereaved family members, whose children had brain tumors treated at our institution. Common themes elicited included a desire for positive messaging and providing opportunities to network with other bereaved families. In pre-event surveys 88% of the N/O team responded they would be willing to attend a bereavement program for families. The program was held on the hospital campus. It was unstructured, except for brief opening remarks and a slide show presenting patient pictures accompanied by staff memories of the child. 45 bereaved family members attended representing 15 patients. 10 N/O team members attended. Most team members cited a scheduling conflict for not attending, but some expressed discomfort. Follow up surveys from N/O team members (16) and families (6) were overall positive. One respondent did not attend because the event was on the hospital campus while two people reported that they enjoyed being able to write notes to staff. Several parents reported during the event the importance of hearing specific staff memories of their child. Parents of deceased children with brain tumors prefer diagnosis specific bereavement programming, have a strong desire to connect with other bereaved parents, and want opportunities to thank staff that cared for their children.