The Value of a Medical Home for Children With Medical Complexity From the Perspective of Their Families

To identify what families value in a medical home for children with medical complexity (CMC).

This was a qualitative study using semi-structured interviews with caregivers of CMC recruited from a single complex care program. Participants identified their child's medical home during the interview and described experiences which made it a medical home. Transcripts were coded and themes were developed through iterative team discussions using thematic analysis; a parent partner was on the team from grant development through publication.

During semi-structured interviews with 17 caregivers of CMC, 94% identified a medical home. Caregivers identified it was valuable for a medical home to provide comprehensive whole child care through curiosity to learn, a willingness to problem solve, and bi-directional trusting relationships that reduced the mental load on families. Caregivers gave specific examples where the synergy of these components improved CMC and family outcomes.

These results support the current definition of a pediatric medical home for CMC and also introduce the novel idea that having a medical home has a positive outcome of reducing the mental load on families. This study suggests ensuring delivery of care concordant with the medical home principles can support the needs of CMC.