Greater access and awareness of pediatric hospice and respite services could help improve outcomes as family caregivers nationwide struggle to support a growing population of medically fragile and complex children.

Families face several challenges caring for serious and terminally ill children in the home, according to Shekinah Eliassen, CEO of George Mark Children’s House (GMCH). The nonprofit offers pediatric hospice, respite and transitional care at its center in San Leandro, California. GMCH was founded in 2004 by Kathleen Nicholson Hull, clinical psychologist, following the deaths of her two brothers, George and Mark.

Parents lack awareness about the supportive options available, including facility-based pediatric hospice and respite, Eliassen indicated. Misconceptions about hospice are among the most significant barriers, she said. Referring clinicians often do not understand the full scope of these services or that they can be offered concurrently alongside a pediatric patient’s curative treatments.

“What truly differentiates pediatric respite from adult hospice is the integration of joy, play and support therapies alongside medical care,” Eliassen told Hospice News in an email. “Access remains one of the biggest challenges nationwide. Many providers simply don’t know that pediatric respite programs exist. Increasing awareness among referring physicians, insurers and hospital systems is essential if we want families to know that help — and hope — are available.”

Demand Rising

Family caregivers lack respite options during a time of rising demand, according to Dr. Amy Porter, physician and researcher at Massachusetts General Hospital’s pediatric program, Mass General Brigham for Children. Porter is clinically trained in pediatric palliative and complex care.

Roughly 31% of the nation’s overall population of children between 3- and 7-years old had chronic conditions in 2023, a rise from 25.8% in 2011, according to recent research published in the Journal of the American Medical Association (JAMA).

Medically complex children have chronic conditions or experience severe functional limitations. They often have higher health care utilization rates and require more intense levels of care for longer durations of time, Porter stated.

Parents have limited access to long-term caregiver support in the home and rarely have opportunities for respite, she said. Insufficient respite support can have negative effects on outcomes and impact the ability to manage a pediatric patient’s emotional and physical needs effectively.

“There is a rapidly growing population of kids with medical complexity,” Porter told Hospice News. “These children require constant, complex care. Family caregivers almost always have both limited support and very few to no breaks for decades of their child’s life. What’s at stake is these parents and other family caregivers being able to continue to care for their child safely. The lack of access to respite undermines this critical parent workforce, especially when we think about the sustainability of our health care system and the capacity to take care of these kids.”

Having access to respite was found to be critical to parents’ well-being and to their capacity to sustain caregiving functions, in a recent study published in the Journal of Pain and Symptom Management. Parents surveyed in the study indicated a lack of bandwidth and time to pursue respite options and indicated that supportive resource navigation would be key to improved utilization.

Having regular access to respite can have significant impacts for parents caring for medically complex children, Porter said, one of the study’s researchers.

“There are gaps in parents’ finding rest, recharge and respite,” Porter said. “Navigating what’s out there and determining which services actually meet their needs is simply not within their reach. Respite is not a one-size fits all because different families need different kinds of services at different points along their child’s trajectory. Long-term [respite] can have tremendous ripple effects.”

Overcoming barriers

Key to improving access is the ability to communicate that pediatric hospice and respite care is uniquely focused around the entire family, according to Eliassen. Parents, grandparents, siblings and extended family can be included in the care model approach, she stated.

GMCH’s interdisciplinary model includes a team of pediatric specialists, nurses, child life experts, social workers and volunteers. Respite services should be focused on rest for families while providing connection symptom relief for pediatric patients, whether through music or pet therapy or celebrating special occasions, she indicated. Providing quality support for families involves having a team with both clinical skills and “deep compassion,” Eliassen said.

Much room for improvement exists when it comes to community outreach and referral education, said Dr. Tasha Faruqui, pediatrician, author and medical advocate.

Clinicians need greater exposure to pediatric hospice and respite throughout their medical training, according to Faruqui. Additionally, increased community education could help ease family caregiver burden.

“We need to bridge the gap between what is available and educating our physicians to know what resources there are,” Faruqui told Hospice News in an email. “As a physician myself, I have not heard of many respite options. The first thing is providers need to even know what exists for respite. Then these providers need to share with their families so they know that they have options.”

Pediatric hospice and respite services can help alleviate caregiver distress and improve outcomes, Faruqui said.

Caregivers often experience higher levels of physical and emotional distress, particularly if they are supporting both medically complex and healthy children at home, she indicated. Pediatric respite and hospice focuses on family- versus versus patient-centered goals-of-care, which involves a different care model compared to hospice programs for adults.

“There are numerous benefits of respite for pediatric patients and their families,” Faruqui said. “As a parent to a daughter in hospice, I would look at supporting the whole family. It provides very intentional meaningful days for the patient. It may also allow opportunities for caregivers to spend time with the siblings and do activities that they may not be able to do with the medically complex sibling. Many siblings live in the shadow of the medically complex child.”