Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program

Abstract

Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine.

When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories

“…Of these, four represented quantitative studies [40][41][42][43], six represented qualitative studies [44][45][46][47][48][49], and two represented studies which included both quantitative and qualitative outcomes [50,51]. Nine articles were descriptive in nature [52][53][54][55][56][57][58][59][60]. These articles contained well-defined bereavement interventions, yet the interventions were not tested empirically and, therefore, the outcomes could not be provided.…”

Family members' opinions about bereavement care after cardiac intensive care unit patients' deaths

“…This type of written support has been shown to provide a sense of certainty and security for families . In addition, brochures and pamphlets are effective methods of supporting families in neonatal and paediatric ICUs . Families appear to value a bereavement brochure, which may be a cost‐effective option for ICUs to provide support …”

Bereaved Parents, Hope, and Realism

“…Bereaved parents on the council use their personal experiences to advocate for improvements in clinician awareness of patient and family needs across the illness course and after the death of a child. 18 Parents previously have described their participation in collaborative activities to improve understanding of the patient and parent illness experience as a profoundly meaningful component to their child's legacy. 19,20 Bereaved parents on the steering council have personal, first-hand experience with tensions that arise when families and clinicians misinterpret one another's hopes in the setting of a child's approaching end of life.…”