Caregivers’ experiences of the Early Hearing Detection and Intervention (EHDI) process from detection to intervention in South Africa

Abstract

Background As the implementation of early hearing detection and intervention services (EHDI) in many countries gathers pace, attention is shifting from arguments for universal newborn hearing screening and subsequent early intervention to closely focus on the evaluation of the practice and process of EHDI programs. However, there are very few studies within the South African context that have focused on caregivers’ own accounts of how they experience the EHDI process for their child with hearing impairment. Methods The study aimed to describe caregivers’ experience of the EHDI process from detection to intervention, within the South African context. Narrative interviews were conducted in-person, telephonically or via videoconferencing with nine caregivers of children with hearing impairment. The interview data was analyzed using inductive thematic analysis. Results Three key themes emerged from the interview data: a) caregivers experienced denied timely access through healthcare workers’ dismissal of their concerns; not being referred to audiologists timeously; receiving fragmented services; receiving services far from where they live; the cost of EHDI services; and through the use of English as a medium of communication for all EHDI services; b) participants’ experience of support services was deemed not to be sufficient due to lack of awareness of hearing impairment and EHDI; limited family counselling; lack of available Sign Language training; and constrained financial support; and c) caregivers expressed appreciation of EHDI services due to observed language development of their child; their child’s academic performance; and their interaction with EHDI team members. Conclusion Current findings revealed limited availability, affordability and accessibility of EHDI services in the South African context and raise significant implications for clinical practice, policy implementation and advocacy within the departments of health, social development, and basic education in this country. These findings also highlight the need for economic evaluation of EHDI programs, where EHDI is placed on the political advocacy and resource allocation agenda; and widespread implementation of FC-EHDI, within this context.