Date of Award
Spring 2024
Document Type
Thesis
Degree Name
Master of Science (MS)
Department
Counselor Education and Counseling Psychology
First Advisor
Astrida Kaugars
Abstract
Relatively little research has examined the experiences of caregivers of children with medical complexity (CMC). Additionally, it has been well documented that CMC, who are Neonatal Intensive Care Unit (NICU) graduates, have high healthcare utilization. As CMC often have ambiguous or multiple diagnoses, caregivers may face a period of adaptation to diagnosis differently from those with a singular diagnosis. Caregivers of CMC are at higher risk for anxiety, depression, and difficulties with the healthcare system. To date, no published studies have examined the experiences of caregivers of CMC, their adaptation to diagnosis, and their well-being. This study was conducted in two parts. The first part included (n=305) children who received a referral to the Complex Care Program (CCP) following NICU graduation between 2017 and 2019. Children included in this portion (n=305) had their health data (i.e., demographic information and healthcare utilization metrics) extracted from their electronic health records. Whitney-Mann U analyses were conducted to analyze differences between those who enrolled and did not enroll in the CCP. The second part involved 19 caregivers who were recruited from the CCP at a local children’s hospital to answer online questionnaires regarding their adaptation to diagnosis and current well-being. Pearson product-moment correlations examined associations among constructs of interest. Analyses from part one indicated that children who were enrolled in a CCP had higher healthcare utilization than those who did not enroll. Part two found that more positive caregiver adaptation to their child’s diagnosis was associated with less anxiety, more general personal hopefulness, and more enabling partnerships with medical providers. Overall, present findings show that CMC had higher healthcare utilization with CCP enrollment than CMC who did not enroll in the CCP. Consistent with previous research with caregivers of children with single chronic illnesses, better adaptation to their child’s diagnosis among caregivers of CMC was positively associated with indicators of positive well-being. Utilization of family-centered care in care coordination programs to support caregivers of CMC is a major area of growth for CCPs. These findings underscore the importance of programs evaluating caregiver experiences of the diagnostic process, experiences with their healthcare facility, and well-being.