Parental experiences with a hospital-based bereavement program following the loss of a child to cancer

Abstract

OBJECTIVE: The death of a child from cancer is an intense and life-changing loss for a parent. Guided by the principles of patient- and family-centered care, hospital-based caregivers developed a program to provide bereavement support for parents through phone calls and mailings. The aim of the present qualitative phenomenological study was to understand how parents experienced participating in this bereavement program. METHOD: A total of eight parents from six families participated in a focus-group evaluation of the two-year hospital-based bereavement program. Two social work clinicians/researchers independently analyzed the transcript of the focus group to define themes. RESULTS: Four themes were identified: (1) lived experience of grief, (2) importance of relationships with the hospital-based team, (3) bereavement support from hospital-based providers, and (4) extending bereavement care. SIGNIFICANCE OF RESULTS: Participants indicated the value of ongoing communication and connection with members of the healthcare team, who were often central to a family’s life for years during their child’s cancer treatment. Parents also provided suggestions for extending bereavement support through continued contact with providers and informal annual gatherings, as well as through a peer (parent-to-parent) support program.