Leveraging Grief: Involving Bereaved Parents in Pediatric Palliative Oncology Program Planning and Development

Abstract

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.

Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study

“…Dedication to providing excellent care during treatment and into bereavement for seriously ill children and their family members is crucial for holistic, patient-, and family entered care. Parental grief is complex and support for bereaved parents is universally needed, albeit with individual differences (Spraker-Perlman et al, 2021 ). According to the challenges and needs of the family before and after the death of the child, the care team needs to pay special attention to the families of the bereaved patients.…”

“…One of them was the headers. In the study of Spraker-Perlman et al (2021), 13 mourning parents participated in the study, which despite the small number of participants, rich results were obtained in the study (Spraker-Perlman et al, 2021). The inclusion criteria was having experience in pediatric cancer wards for at least two year, Being formal and willingness to participate in study.…”

“…Attention to, emotional, physical, environmental and psychosocial needs are the criteria considered during family bereavement (Suttle et al, 2017 ). Despite this need, care for bereaved parents did not exist widely 10 years ago, and pediatric providers might not have knowledge, even when bereavement care programs exist (Spraker-Perlman et al, 2021 ).…”

“…Bereaved parents have identified a need for improved bereavement support, emphasizing the important role that the healthcare team and medical institution serve in their grief journey. Despite this need, care for bereaved parents did not exist widely 10 years ago, and pediatric providers might not have knowledge, even when bereavement care programs exist (Spraker-Perlman et al, 2021 ). There is a wide variety of bereavement programs where services can include a range of telephone or letter calling programs, grief support groups (siblings or parents), or meetings with professionals to discuss the death of a child or be the results of the autopsy (Widger et al, 2012 ; Yahia et al, 2015 ).…”

“You are not alone”: Connecting through a bereaved parent mentor program for parents whose child died of cancer

“…Parents find interactions with other bereaved parents as helpful because it offers opportunities for shared experience, normalization of grief, and helpful insight into the future. [15][16][17] An additional intervention that has potential benefits for parents is that of formal, structured peer support. [18][19][20] For example, a trained parent mentor can provide anticipatory guidance and practical advice as they share their experience of navigating a child's illness and end of life, as well as provide support during bereavement.…”