Background: Caregivers of Children with Medical Complexity (CCMC) are essential to their child’s care during hospital admissions. Prior research suggests that prolonged hospitalization of their child negatively impacts the emotional, physical and psychosocial well-being of CCMC. However, there is a paucity of data regarding caregivers’ perspectives on potential effective solutions to improve their own wellness while caring for their hospitalized child. We aimed to explore the perspectives of CCMC regarding interventions that could enhance their well-being during hospitalization.
Methods: Semi-structured interviews were conducted with a convenience sample of English-speaking CCMC during their child’s hospitalization on a general pediatric floor at a tertiary-care medical center. Directed content analysis was used to identify emergent themes in the interviews. Preliminary data from initial 9 families were organized into categories that capture wellness definitions and challenges faced by caregivers. Data collection and analysis is ongoing.
Results: CCMC emphasized the importance of mental health, with 100% of participants associating wellness with emotional and psychological components of well-being. The impact of hospitalization on CCMC self-care was a prominent theme (78%), with caregivers reporting disruption of their own medical appointments, sleep, and nutrition. CCMC positively valued hospital resources (78%) such as Child Life, but reported logistical challenges (67%) such as food availability and parking. CCMC also expressed the need for support groups and mental health check-ins (33%) and highlighted loneliness and the need for social connection during long stays (22%). CCMC-suggested interventions include expanding food accessibility and increasing social work support focused on caregiver mental health (Table 1).
Conclusions: CCMC face considerable barriers to maintaining their own wellbeing during their child’s hospitalization. While current hospital resources such as child-life services and discounted parking were appreciated, CCMC identified the need for enhanced mental health support, improved social connection opportunities, and better logistical accommodations. These findings suggest the importance of holistic support systems that address the full scope of caregiver wellness needs. Implementing targeted interventions, such as increased mental health check-ins, expanded food services, and peer support groups, could significantly improve the CCMC experience during hospitalizations.
