How caregivers of medically complex children build resilience

Researchers at the University of Rochester Medical Center (URMC) have uncovered important strategies that help caregivers and parents of children with medical complexity (CMC) adapt to the inherent stress in their roles. The qualitative study, published in Hospital Pediatrics, provides a roadmap for developing more effective support programs for these often-overlooked families.

The study team, led by Nathaniel Bayer, MD, assistant professor of Pediatrics, and including Jennifer Johnson, director of family and community outreach and the Family Connection Program at UR Medicine’s Golisano Children’s Hospital (GCH), conducted in-depth qualitative interviews with 14 caregivers representing diverse family situations. Working with URMC’s Pediatric Family Advisory Council, the study analyzed how caregivers successfully navigate the challenges of their circumstances.

CMC are defined as the one percent of children with the most complex medical conditions. They tend to have multiple chronic health conditions and developmental disabilities, frequently utilize health care services, and use medical devices such as a gastrostomy tube or tracheostomy. Examples of CMC include children with cerebral palsy, serious congenital heart defects, or genetic disorders. Given these substantial needs, caregivers face challenges to balance raising their child with completing other family responsibilities.

Through these interviews, the researchers identified three critical strategies that supported successful adaptation:

• Finding acceptance and meaning in the caregiving experience helped caregivers adapt to their role: Caregivers adapted to celebrate non-traditional milestones and integrate the role of being a medical care provider into their identity. “Parents learn to celebrate their kids’ developmental progress on their own different timelines,” said Bayer. “This is a process of finding joy and acceptance for a childhood that may be different than they originally envisioned. Parents are remarkably strong and find a way forward.”

• Establishing and organizing a practical system, team, and services to care for their child enhanced the process of caregiver adaptation: Families who found comprehensive care networks combining clinical teams, home nursing, and community services reported feeling supported and less isolated in the process. Given the extensive health and community systems, navigating these networks is challenging.

• Developing self-care, emotional sharing, and coping strategies enabled caregiver adaptation: Parents who developed perspective and incorporated mindfulness reported having reduced stress. “Finding time for yourself while caring for your child is extremely challenging,” said Bayer. “Parents are creative. Many find ways to incorporate self-care within their routines, such as listening to music, dancing, crafting, or some other activity while they engage in caregiving activities.”

The findings also reveal significant gaps in current infrastructure to effectively support parents and caregivers of CMC. Caregivers reported struggling to build support systems while maintaining employment, highlighting the continued unmet need for occupational programs and workplace policies to support sustainable employment and financial stability for CMC caregivers.

“Parents and caregivers are spending a tremendous amount of time, effort, money, and energy trying to support themselves and their families while navigating the system,” said Bayer. “These families are at risk of not having the time and resources to accomplish other important activities like developing a support community and engaging in coping strategies for themselves.”

Given these challenges, the study highlights the urgent need for caregiver support programs, institutional peer mentorship within the health care system, and better integration of adaptation support into clinical care pathways. Researchers also emphasize the importance of policy reforms to create more caregiver-friendly workplace environments and policies.

“We hope these findings will inform continued intervention and program development to better support CMC caregivers as they adapt to caregiving for their children,” said Bayer.