The Impact of Care Coordination on Caregivers


A new study of Medicaid-enrolled children with disabilities has revealing findings about the impact of care coordinator services on caregivers.



Care coordination for Medicaid-enrolled children with disabilities can be a complex process with multiple inter-connected components, yet according to a new study, some of those components are more important to the satisfaction of parents than others.

The study, published in the Journal of Pediatric Health Careshows that care coordination experiences were associated with high levels of satisfaction in the parents/caregivers of Medicaid-enrolled children with disabilities. As part of a larger study of the experiences and utilization of care for children covered under Medicaid’s “Aged, Blind, and Disabled (ABD)” eligibility category, this analysis sought to identify the specific features of care coordination that maximize satisfaction.

For the study, data were collected via a telephone survey of more than 2,000 parents/caregivers of children enrolled in Medicaid as ABD in 2015 in an Ohio pediatric Medicaid accountable care organization. The telephone interviewers administered the Family Experiences with Coordination of Care questionnaire which was designed to assess care coordination quality.

The study found that caregivers who reported that a care coordinator helped with specialist appointments or was knowledgeable, supportive, or advocated for the child, were significantly more satisfied with care than caregivers who did not have this experience with a care coordinator.

“Care coordination is considered an important service for children with special healthcare needs and disability. It is hoped that high quality care coordination can improve the patient/parent experience by assisting with the complexities of interacting with multiple providers and systems and can decrease costs by avoiding duplicative services,” says study author Deena J. Chisolm, PhD, principal investigator in the Center for Innovation in Pediatric Practice at The Research Institute at Nationwide Children's Hospital.

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“We found that caregivers reported higher satisfaction if they perceived their care coordinator to be ‘knowledgeable, supportive, and advocated for the child’s health needs’ and if they reported that their care coordinator confirmed appointments with specialists,” Chisolm says. “Other factors including help with needed community services and asking about concerns and health changes were not significantly associated with satisfaction. Care coordination is most effective when patients/parents are actively engaged. Maximizing satisfaction in one way to promote engagement. Findings from this study can be used in designing and evaluating care coordination programs.”

Other unique findings

The study also found:

  • Experiences of care coordination were largely consistent across racial groups.

  • Children with medical complexity were more likely to report having a care coordinator compared to those with non-complex chronic conditions.

  • Caregivers in urban communities and those with without education beyond high school were more likely to report receiving needed help obtaining needed community services.

  • Caregivers of younger children reported higher perceptions of a care coordinator being knowledgeable, supportive, and advocating.

Based on the study, Chisolm offers three takeaways:

  • Care coordinator training should emphasize the importance of supporting parents and advocating for children.

  • Support with specialty care access and visit confirmation is highly valued.

From the perspective of parents/caregivers, opportunity for improvement exists across all care coordination activities.

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