Hospices Step Up Pediatric Bereavement Care Amid Rising Demand

Some hospices have found peer support to be a crucial component of their pediatric bereavement programs amid rising demand for these services.

Research indicates that the number of bereaved children nationwide is growing. An estimated 6 million children in the United States will experience the death of a parent or a sibling by the age of 18, according to data from the Child Bereavement Estimation Model (CBEM) 2023. This represents roughly 1 in 12 children nationwide, a ratio that has seen incremental growth in recent years.

An estimated 1 in 13 children experienced such a loss before adulthood in 2022, up from an average of 14 in 2021, according to annual CBEM reports from the Judi’s House/JAG Institute.

Judi’s House/JAG Institute is a Colorado-based nonprofit organization that provides bereavement services to adults and youths and also offers grief support training to mental health professionals. The organization additionally researches child bereavement services and needs.

These data point to a growing need for grief services built around the unique needs of children, including programs that integrate peer support, according to Dr. Micki Burns, chief clinical officer at Judi’s House/JAG Institute.

“If we conceptualize that [data], that’s about three kids in an average classroom of around 30 students,” Burns told Hospice News. “Hospices are often the only providers in a community offering bereavement to children and families. It’s such a critical service and well-worth the return on investment to have a resource in communities.”

Peer support crucial as bereaved children needs mount

Roughly 10% to 15% of bereaved children nationwide will need more significant therapeutic care and experience negative long-term outcomes as they age, according to Burns.

“Experiencing a significant loss can be such an isolating experience,” Burns said. “We’ve found that connection with other peers who have experienced a similar type of loss has been the real beauty of a lot of these grief support programs.”

Around 1,192 children became “newly bereaved” each day in 2021 due to the death of a sibling or parent, the 2023 CBEM report found.

Nearly a third (32.4%) of parental deaths that year were related to accidents, with heart disease the second leading cause at 11%. Suicide ranked as the fourth most common at 9.1%.

Among siblings, congenital conditions and birth defects were among the leading causes of death, at 30.1% and 15%, respectively.

Losing a parent or sibling through a sudden or complicated death can adversely impact children in various ways at different developmental stages, according to Danielle Visone, director at Tidewell Grief Care’s Blue Butterfly grief support program. The program serves children ages 5 to 18 and their caregivers who have experienced a significant death. 

Peer support groups are a vital part of supporting bereaved children, Visones said. These children often feel isolated in their experiences, and having a group of peers in similar situations can positively affect how they learn to process grief, she said.

“The need is so great, because kids are impacted by death differently than adults in that kids’ brains are still developing and processing grief along with that development,” Visone told Hospice News. “Children do better when they’re with their peers and they are not feeling alone or like they’re the only kid going through this.”

The need for peer-oriented grief support has been particularly significant among children experiencing the death of a parent or guardian, she added.

Tidewell Grief Care is an affiliate of Empath Health, which launched the Blue Butterfly children’s program in 2018. Many of the children served by the program are those who have experienced a traumatic, unanticipated or sudden death of a parent or close loved one, such as homicide, drug overdose, suicide or motor vehicle accident.

“We knew there was a need, because we were getting a lot of inquiries for childrens’ grief, many asking if we had peer support groups,” Visone said. “We didn’t have these at the time, but changed that after getting inquiries from all our different territories. The idea of creating a safe space for kids in our grief support model became really paramount to help them not be alone.”

Strategies and impacts of reaching bereaved youth

This year, Blue Butterfly is expanding its peer support services for youth populations.

For example, the program is hosting an eight-week summer camp for grieving children and also piloting a school program to offer training in grief support and recognition to educators at local schools.

Partnering with schools is a critical way of reaching bereaved youth populations in a community, according to Stacy Orloff, vice president of innovation and community health at Empath Health.

“We’ve done a lot of work in the school system,” Orloff told Hospice News. “We have staff that work exclusively with the school systems to help train and teach educators, administrators, guidance counselors and social workers to provide some grief services. We continue getting a lot of referrals from the school system in public, private and faith-based communities.”

The negative risks of unmet grief needs can be substantial for vulnerable youth populations, according to Jenny Kaplan, founder and director of research and training at Jeff’s Place, a Massachusetts-based grief support provider.

Children who are not adequately supported along different stages of their grief can experience declines in their ability to focus and learn in school and have difficulty with building and sustaining relationships throughout their life, Kaplan said. They are also more likely to turn to unhealthy coping strategies that strain mental health and physical development such as substance abuse and addiction issues and may have higher earlier mortality rates than their peers, she added.

“Bereaved kids have higher risk factors than kids who are not,” Kaplan told Hospice News. “We looked at grief and growth factors to find a strengths-based, resilience-focused way of measuring the impact of working with bereaved kids, whether working individually or in groups. Some of the strongest feedback we’ve gotten from kids is how important it is to have differently-aged peer groups. It’s a really important differential in terms of outcomes.”

Hospice providers also find value in offering ongoing community education and outreach, according to Kim Patton, bereavement counselor at Trustbridge Hospice Care.

Educating adults in the community on how they can advocate and address grieving needs of children as they age is crucial to how they evolve in life, Patton said.

“Adults can advocate for a child’s needs when they’re really struggling at different points in life, maybe five or 10 years later when they’re reprocessing this loss in a different way,” Patton told Hospice News. “It’s being able to provide as much education to the people in their lives so that they can be supportive and advocate for these kids.”