Caregiver Burden, Caregiving Satisfaction, and Health-Related Quality of Life Among Caregivers of Children with Medical Complexity

Children with medical complexity (CMC) depend on technology for survival and rely on primary caregivers, generally their mothers, to provide both complex and challenging care in the home. CMC require [...]
Purpose: To examine the relationship among caregiver burden, caregiving satisfaction, and health-related quality of life (HRQOL), and to identify caregiver- and child-related variables of caregiver burden and caregiving satisfaction. Designs and Methods: A cross-sectional study was conducted. Caregivers completed the Zarit Burden Interview, Caregiving Satisfaction Scale, and Health Survey Short Form. Socio-demographics of the caregivers and CMC were also collected. Results: Of 32 participants, 93.8% were female and the biological mother. A significant moderate, inverse relationship was found between caregiver burden and caregiving satisfaction. Caregiver burden had a significant strong, negative association with the mental health component of caregivers' HRQOL. Caregiving satisfaction had a significant moderate, positive association with the mental health component of caregivers' HRQOL. Education level of caregivers had a significant moderate, positive correlation with caregiver burden and a significant moderate, negative correlation with caregiving satisfaction. A significant moderate, positive association was found between family income and caregiver burden. White caregivers had significantly greater caregiver burden and significantly lower caregiving satisfaction compared to caregivers who were Black/African American and more than one race. Conclusions: Despite caregiver burden, caregivers of children with medical complexity have caregiving satisfaction. Regardless of the education level and family income of caregivers, caregiver burden and caregiving satisfaction should be recurrently assessed as caregivers provide long-term complex care for their child. Practice Implications: Associations of caregivers' mental HRQOL to caregiver burden and caregiving satisfaction highlight the importance of having nurses identify caregivers at risk of becoming overwhelmed with care. Key Words: Children with medical complexity, caregiver burden, caregiving satisfaction, health-related quality of life.