Empowering bereaved parents in the development of a comprehensive bereavement program

Abstract

Objectives * List innovative aspects of the bereavement program at St. Jude Children’s Research Hospital (St. Jude) that will be presented with the help of bereaved parent mentors. * Describe the content and implementation of the various components of the bereavement program at St. Jude, including the paired mentor program, bereaved parent-developed resource manual, communication cards, and videos. 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. The bereavement program at St. Jude Children’s Research Hospital begins with anticipatory bereavement services prior to death. Following the child’s death, a trained 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. Additionally, bereaved parents have created a resource manual with parent and sibling with recommended books, websites, and other helpful references. Parents developed a booklet containing reflective pieces and video describing difficult moments in their grief journey to provide a support to other parents and staff. Finally, they designed and illustrated communication cards to be sent to all bereaved families at key time points during the first 13 months after a child’s death. This session will explore the development and implementation of the unique parent-developed bereavement policy and program at St. Jude Children’s Research Hospital. A case scenario will help demonstrate the components of a proactive, comprehensive bereavement plan. The addition of bereaved parents to this session will give the parents a chance to describe their own grief journey and the goals of the program from their perspective. 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 other programs and for the field of hospice and palliative medicine as a whole.