Why do some caregivers of children with disabilities participate in care management while others do not? Lessons from a population in a pediatric accountable care organization

Accountable care organizations (ACOs) offer care coordination services in an attempt to lower costs while improving the quality of care; however, not all families participate. We conducted focus groups and individual interviews with caregivers of children who recently joined a pediatric ACO and evaluated why some caregivers of children with disabilities engage in care coordination while others do not. Four common themes emerged as factors influencing the degree of caregiver engagement in care coordination services. These themes include: (1) availability, (2) alignment of services with family need, (3) ease or difficulty of engagement, and (4) timing of services. These findings suggest that considering caregiver perspectives across stages of program development and implementation could encourage more caregivers to engage in care coordination programs.