Now representing ~1% (>1 million) of all US children, children with medical complexity (CMC) are one of the fastest growing pediatric populations, account for one-third of pediatric health care expenditures, and have the highest risk for poor medical outcomes.1, 2 As most CMC rely on family members for much of their care, family caregivers of CMC are critical in ensuring their child’s health and play a central role in the operational and financial capacities of pediatric health care systems.3 Therefore, supporting and improving the well-being of family caregivers of CMC is a national priority.4

Despite the link between caregiver and child health, however, the well-being of CMC caregivers is under-described.5, 6 The evidence-base largely consists of qualitative reports and general or unidimensional examinations of well-being. For example, we have previously found that CMC caregivers report reduced overall mental health and mental health-related quality of life.7, 8 However, it remains unclear which aspects of emotional distress (e.g., symptoms of anxiety) caregivers are at highest risk for experiencing. Relatedly, existing research is largely deficit-oriented with minimal reporting on caregivers’ psychological strengths such as self-efficacy (i.e., confidence in one’s ability to deal with challenges) – minimizing potential benefits associated with this caregiving role.9 Additionally, it is widely accepted that family caregivers are at risk for sleep disruption given CMC’s around-the-clock needs, yet in-depth descriptions of CMC caregivers’ sleep-related health are lacking. A more comprehensive and rigorous understanding of CMC caregivers’ well-being is critically needed to inform the development and testing of family-level psychosocial interventions and system-level reforms.10

To address these knowledge gaps, we evaluated the well-being of caregivers of CMC receiving treatment at a pediatric complex care center (C3). This study aimed to: 1) describe the self-reported well-being among family caregivers of CMC using a battery of psychometrically rigorous measures; 2) examine relationships between measures of emotional distress and psychological strengths; and 3) explore associations between caregiver well-being and caregiver, child, and family characteristics. We hypothesized that CMC caregivers would report higher levels of emotional distress compared to the general US population.