Riley Children’s Grief Program Cares for Families After Losing a Child

The pediatric palliative care department at Riley Children’s Health has rolled out a new bereavement program aimed at improving grief support for families facing the loss of a child.

The new program includes memory- and legacy-making projects designed to address familial grief following the death of a child at home.

A main goal of the initiative is to construct a model that can be replicated and refined around the diverse and unique needs of bereaved and grieving families, said Alisha McGuire, a licensed clinical pediatric palliative care social worker at Riley Children’s Health, which is part hospital of Indiana University (IU) Health.

Significant gaps exist when it comes to access and support of pediatric hospice and bereavement care, an issue that drove the program forward, McGuire stated. Reimbursement challenges play an important role in the types of services available, as many pediatric payment streams exist in Medicaid and state-based policies.

“Indiana is a state in which adult hospice agencies have pediatric-trained staff, versus in other states you may see a full, robust pediatric team,” McGuire told Hospice News. “There are gaps that exist, and one of those gaps is a psychosocial provider as part of that bereavement piece we might normally offer to families navigating a child loss. There are things that are very unique to losing a child, whether it’s in the hospital or at home. There are non-medical things we can do during that time.”

The memory-making program is designed to be adaptable for implementation by any hospice and was developed with input across multiple disciplines and bereaved parents.

Riley Children’s Foundation partnered with LG30 Foundation Inc. for a fundraising campaign to support the project. The gathered philanthropic donations fund the pediatric palliative care team’s therapeutic supplies for the memory boxes, kits, books and artistic projects.

The memory-making therapeutic activities can have a significant impact on bereaved families and parents experiencing anticipatory grief, posited McGuire. The therapeutic-guided activities allow families to form trusted relationships with staff and address difficult emotions, she said.

The program was recently included in a literature review published in the Journal of Palliative Medicine. The review illustrated the program’s implementation, led by McGuire, with insights and support from Rachel Rusch, a licensed clinical social worker at the pediatric palliative medicine division at Children’s Hospital Colorado.

The review detailed the grief program’s structure, key staffing considerations, supplies and resources needed, and included perspectives from both families and providers.

Hospice providers on the pediatric palliative care teams that participated in the memory-making program have suggested making it more accessible to families facing other unique bereavement situations.

Bereavement outcomes will be evaluated following six months of a family’s participation in the new program. Family feedback has thus far been positive, McGuire stated.

Parents experiencing the loss of a child often navigate complex emotional and spiritual needs compared to others. Shock, anger, fear and depression can be experienced differently, she indicated.

Integrating legacy-building therapies involves assessing developmentally-appropriate and family-centered bereavement needs, according to McGuire. Hospices seeking to strengthen or develop pediatric- and family-centered grief services must prioritize interdisciplinary staff collaboration. This involves coordination across bereavement teams, art or music therapists, child life and behavioral health specialists, social workers and other clinicians.

“My hope with this manuscript paper is that it shows that an institution has done this and is building that foundation for other programs to feel empowered,” McGuire said. “It’s trying to make it a little bit easier on other folks with different programs. My hope is that this aids in the bereavement process. We can’t fix that a child is going to die, but we can create meaning and offer support with these interventions. This legacy- and memory-making, there are so many different ways that people perceive it.”