Impact of Systems of Care on Emotional Well-Being of Primary Family Caregivers of Children with Medical Complexity

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Abstract
Objectives This study aimed to explore the experiences of caregivers of children with medical complexity (CMC) enrolled in a complex care program, focusing on their interactions with the healthcare system and the impact on caregiver well-being. Methods Qualitative interviews were conducted with 20 caregivers, and data were analyzed using interpretative phenomenological analysis. The interviews covered topics such as navigating the medical system, accessing resources, and interactions with healthcare providers. Results Caregivers faced challenges in navigating the healthcare system, including scheduling appointments, finding suitable treatment plans, and managing hospitalizations. They expressed the need for more practical, financial, and informational resources to support their caregiving responsibilities. Access to respite care was identified as a significant challenge, with limited availability and affordability. Caregivers highlighted the importance of connecting with other caregivers and accessing accurate information specific to their child’s condition. Conclusions for Practice The findings emphasize the unmet needs of caregivers of CMC and the barriers they face within the healthcare system. To support caregiver well-being, interventions should address these barriers by improving infrastructural support, enhancing training for in-home caregivers, and advocating for comprehensive support services for the entire family. Involving caregivers in the development and implementation of interventions is crucial to ensure their feasibility, applicability, and desirability. By addressing these challenges and tailoring interventions to the unique needs of caregivers of CMC, healthcare providers can promote better outcomes for both caregivers and their CMC.
Funding Information
  • National Center for Advancing Translational Sciences (UL1TR001436)
  • University of Wisconsin-Milwaukee (Cialdini Fellowship)
  • Medical College of Wisconsin

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