LAUSR

ABSTRACT Early Hearing Detection and Intervention (EHDI) programs are essential for identifying and supporting Deaf and hard-of-hearing (DHH) children. In South Africa, caregivers are central to EHDI success; however, systemic barriers, limited information, and societal stigma impact their ability to engage effectively in these services. This study aimed to explore caregivers’ experiences and perceptions of their role in EHDI for their DHH children, identifying barriers they face and the way these influence their engagement with EHDI services. A qualitative, phenomenological research design was employed. Twelve primary caregivers were recruited through purposive, snowball sampling from both public and private healthcare settings. Data were collected using in-depth, semi-structured interviews and analysed through inductive thematic analysis. Four themes were identified through a structured coding process: 1) challenges in accessing healthcare services, with barriers including long distances, high costs, and extended waiting times in public healthcare settings; 2) lack of awareness and guidance; 3) emotional stress due to diagnosis and caregiving responsibilities, with participants highlighting psychological distress, uncertainty about their child’s future, and experiences of societal stigma; and 4) positive experiences with private healthcare providers. Findings underscore the need for accessible, family-centred, and culturally sensitive EHDI services in South Africa. Expanding healthcare access, improving provider-caregiver communication, strengthening public awareness campaigns, and integrating structured caregiver support networks are essential steps towards improving outcomes for DHH children. Lessons from global best practices in both low – and middle-income countries (LMICs) and high-income countries (HICs) could inform strategies for enhancing South Africa’s EHDI framework.