Empowering bereaved parents in the development of a comprehensive bereavement program.

Abstract

47 Background: The death of a child poses special challenges to both bereaved families and staff. Each individual's grief journey is unique and ongoing; however, common themes and support systems help to define successful bereavement services. Bereaved parents who have experienced the loss of a child have special insight and can help to identify the key components necessary for the development and implementation of a comprehensive bereavement program. Methods: The bereavement program at St. Jude Children’s Research Hospital is multifactorial and involves both supportive services and useful resources that have been developed by parents who have lost a child to cancer at our institution. Results: The program begins with anticipatory bereavement services prior to death by the bereavement coordinator and Palliative Care team. Following the child’s death, a bereaved parent mentor is offered and available. These mentors have been trained how to identity and triage abnormal or concerning behaviors and how to obtain additional psychosocial support for at risk families. The materials include a parent-created a resource manual with parent and sibling with recommended books, websites, and other helpful references. Parents developed a booklet containing reflective pieces and several videos describing difficult moments in their grief journey to provide a support to other parents, siblings, and staff. Finally, they designed and illustrated communication cards to be sent to all bereaved families at key time points during the first two years following a child’s death. Conclusions: The innovative nature of this program with multiple components of the parent-driven comprehensive bereavement program can serve as a paradigm for the development of others programs and for the field of hospice and palliative medicine as a whole.