The impact of the Indiana Complex Care Coordination Collaborative (IC4) on caregivers of children with complex medical conditions

Background: The Indiana Complex Care Coordination Collaborative (IC4) is a statewide model of care coordination aimed at improving the quality of medical care for children with medical complexity (CMC) by training and embedding nurse care coordinators in primary care practices. This study examines the impact of IC4 care coordinators on caregivers’ and patients’ quality of medical care, access to medical and community resources, care workload, and the quality of life of caregivers and CMC. Methods: Caregivers of CMC ( n = 13) completed one-hour semi-structured interviews focused on met/unmet needs, quality of medical care, co-developed shared plan of care, caregiver/patient quality of life, caregiver workload, and medical home experience. Using NVIVO, researchers used a codebook to conduct an inductive thematic analysis of the interview transcripts. Results: The thematic analysis was revealed five overarching themes: (1) central role of the care coordinator, (2) proactive and personalized support, (3) care across the lifespan, (4) emotional support, and (5) navigating healthcare systems. Caregivers reported that they considered their care coordinator a trusted health professional who can advocate for them with other health professionals. Families appreciated that the shared plan of care created with the care coordinator can be easily disseminated to other healthcare and service professionals, as well as other family members, and helps them be seen as individuals, not just as a medical record. Conclusion: Care coordination can address unmet needs and greatly improve the quality of and access to care received by CMCs and their families. Unanimously, caregivers report the substantial instrumental, informational, and emotional support care coordinators (CCs) provide to access medical systems, resources, planning, and reducepatient care workload. Additionally, several caregivers reported substantial social support from the CC. However, several caregivers still reported feelings of loneliness and difficulties engaging with families without CMC.