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 healthcare 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:
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 healthcare 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.
Bayer developed this research with funding from the NIH/NCATS (KL2 TR001999), supported as a KL2 scholar from the University of Rochester Clinical and Translational Science Institute . The study was additionally supported by the Academic Pediatric Association's Young Investigator Award.
“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.
Hospital Pediatrics
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Caregivers of Children With Medical Complexity: A Qualitative Study of Their Adaptation
28-Apr-2025
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