BMC health services research · 2026
Issues navigating the healthcare delivery system among caregivers of children and youth with special healthcare needs: a qualitative study.
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Meyer Caitlin M, Campbell Rebecca K, Kelleher Maura R, Zielinski Ebonie, Hofmann Molly, Rothstein Jessica D
Аннотация
INTRODUCTION: Caregivers of children and youth with special health care needs (CYSHCN), including those with disabilities, have numerous roles managing care for their children. While caregiver burden is well documented, less is known about how barriers within the healthcare delivery system contribute to this burden and how systems can be redesigned to better support families. This study explored Illinois caregivers' experiences navigating the healthcare delivery system for CYSHCN and sought their perspectives on resources needed to reduce caregiver burden.
METHOD: We conducted a qualitative study as part of a statewide needs assessment in Illinois. Three focus group discussions were conducted with caregivers of CYSHCN recruited through partner organizations. Discussions included participatory activities to elicit priority health needs and concerns for families of CYSHCN in Illinois. Audio recordings were transcribed verbatim, coded, and analyzed by the research team using content analysis to identify themes related to systems-level drivers of caregiver burden and potential solutions.
RESULTS: Caregivers (n = 22) described substantial emotional, logistical, and financial burden arising from fragmented healthcare delivery and insurance systems. Key challenges included poor communication and coordination across providers and health systems, inconsistent electronic health record integration, limited access to pediatric specialists, and inadequate availability and reliability of in-home nursing care. Insurance-related barriers, including instability in coverage, prior authorization requirements, and gaps in coverage for needed supplies, further exacerbated caregivers' strain. Despite these challenges, participants also identified approaches, resources, and supports they have utilized that mitigate caregiver burden, such as multidisciplinary care models, family-centered providers, and support networks. Caregivers emphasized the need for expanded care coordination and navigation, increased mental health supports for families, more flexible insurance and reimbursement policies, and greater investments in home-based care.
DISCUSSION: The findings from this study underscore the need for improvements to the healthcare delivery system through coordinated efforts. Health systems and payers should prioritize the expansion of family-centered care coordination, strengthen communication across providers, and invest in a more stable home healthcare workforce. Advancing disability-inclusive, family centered systems through these strategies is essential to fostering better outcomes for both caregivers and CYSHCN.
METHOD: We conducted a qualitative study as part of a statewide needs assessment in Illinois. Three focus group discussions were conducted with caregivers of CYSHCN recruited through partner organizations. Discussions included participatory activities to elicit priority health needs and concerns for families of CYSHCN in Illinois. Audio recordings were transcribed verbatim, coded, and analyzed by the research team using content analysis to identify themes related to systems-level drivers of caregiver burden and potential solutions.
RESULTS: Caregivers (n = 22) described substantial emotional, logistical, and financial burden arising from fragmented healthcare delivery and insurance systems. Key challenges included poor communication and coordination across providers and health systems, inconsistent electronic health record integration, limited access to pediatric specialists, and inadequate availability and reliability of in-home nursing care. Insurance-related barriers, including instability in coverage, prior authorization requirements, and gaps in coverage for needed supplies, further exacerbated caregivers' strain. Despite these challenges, participants also identified approaches, resources, and supports they have utilized that mitigate caregiver burden, such as multidisciplinary care models, family-centered providers, and support networks. Caregivers emphasized the need for expanded care coordination and navigation, increased mental health supports for families, more flexible insurance and reimbursement policies, and greater investments in home-based care.
DISCUSSION: The findings from this study underscore the need for improvements to the healthcare delivery system through coordinated efforts. Health systems and payers should prioritize the expansion of family-centered care coordination, strengthen communication across providers, and invest in a more stable home healthcare workforce. Advancing disability-inclusive, family centered systems through these strategies is essential to fostering better outcomes for both caregivers and CYSHCN.