Confronting Bureaucracy

Abstract

Background: The number of children with medical complexity (CMC) cared for by parental caregivers is increasing in the United States. Studies reveal parental caregivers experience significant caregiver burden, often attributed to the disease management required by CMC. However, literature has also identified numerous systemic challenges that arise while caring for CMC at home. The impact of systemic challenges on parental caregiver burden has not been examined, thus, the purpose of this dissertation is to explore the relationship between these systemic challenges and parental caregiver burden. Methods: Three studies were completed to explore this relationship. An integrative review of literature from 2014-2023 was completed to identify systemic challenges within the home care system and whether parental caregivers attribute burden to these challenges. A case-control secondary analysis of the National Survey of Children’s Health compared levels of burden between parental caregivers and parents of children without medical complexity as they relate to systemic challenges. Lastly, a qualitative descriptive study was conducted with parental caregivers living in Massachusetts to examine their experiences of caring for CMC. Results: The integrative review of 10 articles revealed a dynamic and interconnected relationship between systemic challenges and parental caregiver burden. The secondary analysis comparing 1,352 parents (n = 676 parental caregivers) revealed significant associations and increased odds of experiencing burden among parental caregivers while navigating systemic challenges. Finally, three themes capturing the experiences of parental caregivers (N=11) emerged from collected qualitative data; lack of discharge preparedness causes emotional distress, care becomes increasingly complex creating new unanticipated challenges, and the psychological toll of parents assuming provider role. Conclusion: The findings from this dissertation provide data-driven evidence to support a relationship between systemic challenges of caring for CMC and parental caregiver burden. This greater understanding of parental caregiver experiences highlights the need for a more holistic perspective in evaluating the care of CMC at home such that systemic challenges, and not a child’s medical needs, are the focus of future exploratory, intervention, and health policy work.