The HAP Foundation, CLHPN Partner to Address Unmet Pediatric Hospice Needs

The HAP Foundation is partnering with the Child Life Hospice and Palliative Network (CLHPN) to improve awareness of and access to child life services among seriously ill youths and their families.

The HAP Foundation helps support research and education in hospice and palliative care. Through the partnership, the organization will help fuel CLHPN’s efforts to expand understanding and utilization of child life specialist services and their benefits for families facing terminal and chronic illness.

Child life specialists can help address a range of unmet psychosocial, emotional and spiritual family needs, according to Alyssa Friedberg, CLHPN co-founder. These professionals help families navigate difficult conversations and health care decisions from a developmentally age appropriate approach, Friedberg said.


“Our goal is to get child life services into the hands of as many families and children as possible. It’s such an unmet need in a lot of areas,” Friedberg told Hospice News. “It’s really important that they understand in a developmentally appropriate way what’s happening and what to expect. We provide opportunities for children to have a say in their care plan and end-of-life planning. We do a lot of helping caregivers navigate therapeutic interventions, working with medical supplies, coping tools and helping [them] process everything that’s happening.”

A main challenge in expanding access and awareness is a lack of trained child life specialists in the hospice and palliative care field, according to CLHPN Co-Founder Jennifer Mangers-Dean. One major concern is that not enough educational avenues or professional development opportunities exist to grow this workforce, Mangers-Dean said.

Among the goals of CLHPN’s partnership with The HAP Foundation is to support research and educational initiatives in child life specialist services, she said. This will involve research around pediatric needs assessments, skill building analysis and developing educational frameworks, according to Mangers-Dean.


An overarching goal of the partnership with CLHPN is to build a workforce program for child life specialists as a framework that can be replicated in other health care professions, Mangers-Dean said. Having an interdisciplinary peer support approach to professional development could help with high turnover and burnout rates proliferating across the continuum, she indicated.

“The goal is to educate the community on this child life specialist role and help them understand the benefits of it,” Mangers-Dean said. “The biggest need right now for this population is more focused education on end of life. Certification in child life is very broad and generalized, there is not a lot of training or education on death and dying for child life specialists. So [experienced] child life specialists have gained the understanding needed to train other specialists.”

The two organizations inked an memorandum of understanding (MOU) to collaborate on ways to build up educational resources for child life services in hospice and palliative care.

The conversation about launching a partnership began a little more than a year ago out of a shared mission to improve experiences for families with terminally ill children, said Joseph Matty, president of The HAP Foundation.

“There’s at times a disinvestment in this field within the health system,” Matty said. “The lack of availability is one main reason we are doing this. We want to make sure that public awareness and continuing education is there for child life specialists, that they have a network to connect with and grow professionally. But it comes down to how people understand what they do and the costs associated.”

Cost can be among the largest barriers to both growing workforces and the availability of child life programs, said Matty. The HAP Foundation will help generate funding support to increase care coordination and education opportunities, as well as create a sustainable structure for programs to launch and grow, Matty said. The foundation will also help fuel marketing and communication efforts to spread awareness of child life services, he added.

Investing in child life services can be a heavy financial lift for some hospice and palliative care organizations, but the return on investment comes with improved quality outcomes, Matty indicated.

“The partnership that we have is working with CLHPN to generate revenues through grants and donations that can assist them in being that conduit for families,” Matty told Hospice News. “All too often in the pediatric space it comes back to not having these services because they’re expensive or can’t be reimbursed well. We want to make sure that the services and tools are available for families that really need help. Child life specialists allow families to be human, and that’s sometimes the most powerful thing you can give.”

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