Caregiver Perceptions of Hospital to Home Transitions According to Medical Complexity: A Qualitative Study

Abstract Objective To explore caregiver needs and preferences for achievement of high-quality pediatric hospital to home transitions and to describe similarities and differences in caregiver needs and preferences according to child medical complexity. Methods Qualitative study using semistructured telephone interviews of 18 caregivers of patients aged 1 month to 18 years discharged from Seattle Children's Hospital between September 2013 and January 2014. Grounded theory methodology was used to elucidate needs and preferences identified to be important to caregivers. Medical complexity was determined using the Pediatric Medical Complexity Algorithm. Thematic comparisons between medical complexity groups were facilitated using a profile matrix. Results A multidimensional theoretical framework consisting of 3 domains emerged to represent caregiver needs and preferences for hospital to home transitions. Caregiver self-efficacy for home care management emerged as the central domain in the framework. Caregivers identified several needs to promote their sense of self-efficacy including: support from providers familiar with the child, opportunities to practice home care skills, and written instructions containing contingency plan information. Many needs were consistent across medical complexity groups; however, some needs and preferences were only emphasized by caregivers of children with chronic conditions or caregivers of children with medical complexity. Distinct differences in caregiver preferences for how to meet these needs were also noted on the basis of the child's level of medical complexity. Conclusions Caregivers identified several needs and preferences for enhancement of their sense of self-efficacy during hospital to home transitions. These findings inform quality improvement efforts to develop family-centered transition systems of care that address the needs and preferences of broad pediatric populations.