P3.K202: Caring for Latino/a Children with Special Healthcare Needs: Perspectives from Latino/a Immigrant Caregivers

Background: Latino/a immigrant caregivers for children with special healthcare needs (CSHCN) in the United States (U.S.) experience numerous barriers contributing to high levels of caregiver stress. In South Carolina (SC), there is a growing presence of Latino/a CSHCN and approximately 1 in 10 of all CSHCN have a foreign-born parent. Current literature lacks a qualitative understanding of Latino/a caregivers’ perspectives, particularly in newer destination states and in the southeastern U.S. In this study, we explored ongoing challenges that Latino/a immigrant caregivers face in meeting the needs of CSHCN in the U.S., the impact of these challenges on their well-being, and provider and health system factors that enhance care for this under-resourced population.

Methods: A sample of 30 Latino/a immigrant caregivers were recruited from their child’s primary healthcare providers at two sites within one SC health system. In-depth interview guides were developed and refined by the research team. A bilingual investigator conducted semi-structured interviews in person or virtually. Interviews were recorded, transcribed in Spanish, and translated into English. The ATLAS.ti software was utilized to facilitate coding. Constant comparison, an approach to grounded theory, was used to analyze data and identify themes.

Results: Thirty interviews were completed with 14 caregivers from one site and 16 caregivers from a second site. Caregivers represented eight different foreign countries and identified primarily as Hispanic or Latino/a (90%) and female (93.3%). Most lived in two-parent family households (80%) with more than one child (66.7%) and had household incomes less than $50,000 annually (83%). Education attainment varied across participants (43% less than high school, 27% high school, 30% beyond high school). Preliminary analysis of the interviews conducted reveals a set of emerging themes: 1) experiencing a lack of resources in country of origin, 2) coming to the U.S. in part to mitigate limited resources for their child, 3) exclusion from some resources due to caregiver and/or child immigration status, 4) appreciating supportive care of their providers, and 5) experiencing a decline in mental and emotional health while demonstrating resilience. Complete data analysis is underway. Illustrative quotes (Table 1) will be included.

Conclusion: Caregivers of CSHCN are the principal shareholders in improving the health and well-being for this pediatric population. As the demographics evolve in SC, and especially as the Latino/a population continues to rise, healthcare providers and systems must be increasingly prepared to meet the needs of these families. Our findings are relevant for healthcare professionals and community-based organizations who seek to better understand how to support Latino/a caregivers of CSHCN to reduce caregiver fatigue and ultimately enhance overall child well-being. Additionally, findings may inform policy makers regarding opportunities to expand program eligibility for CSHCN and enhance well-being and full community participation of their caregivers.