Dallas, A., Ryan, A., Mestan, K. K., Helner, K., & Foster, C. C. (2022). Family and provider experiences with longitudinal care coordination for infants with medical complexity. Advances in Neonatal Care, 23(1), 40–50. https://doi.org/10.1097/anc.0000000000000998
Intervention Components (click on component to see a list of all articles that use that intervention): Care Coordination, Nurse/Nurse Practitioner, Collaboratives,
Intervention Description: The intervention described in the study is a longitudinal care coordination program for infants with medical complexity. The program provides care coordination to infants in the NICU through their first year at home, with a focus on family-facing activities. The program aims to support families in navigating the complex healthcare system, accessing community resources, and coordinating care across inpatient and outpatient settings. The care coordination program involves the involvement of care coordinators, outpatient providers, and program organizers to provide comprehensive support to families.
Intervention Results: Parent-reported benefits included frequent communication and personalized support that met families’ and patients’ evolving needs. Care coordinators, who were trained as nurses and social workers, developed longitudinal relationships with parents. This seemed to facilitate individualized support throughout the first year of life. Providers reported that smaller caseloads were central to the success of the program.
Conclusion: As is true for all descriptive program evaluations, this study offers observations about this program without drawing definitive conclusions about impact.
Study Design: The study design is a descriptive program evaluation using the Centers for Disease Control and Prevention Framework for Program Evaluation. The study used a sequential exploratory mixed-methods approach to evaluate parental experiences, provider perspectives, and care coordinator perspectives. The study also developed a logic model to describe program structure and stated goals.
Setting: The study was conducted at a level IV NICU at a freestanding academic children's hospital, Ann & Robert H. Lurie Children's Hospital of Chicago.
Population of Focus: The target audience for the study includes healthcare providers, particularly those involved in the care of infants with medical complexity, such as neonatologists, nurses, therapists, chaplains, child life specialists, primary care physicians, surgeons, physician assistants, and nurse coordinators. Additionally, the study is relevant to care coordinators, program organizers, and researchers interested in longitudinal care coordination for infants with medical complexity.
Sample Size: 5 parents were interviewed, and 23 parents completed a survey; 8 providers were interviewed, and 26 providers participated in focus groups; 2 care coordinators were interviewed.
Age Range: The age range of the study participants is from birth to the first year of life, as the program provides care coordination to infants in the NICU through their first year at home.
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