Family-centred EHDI services in South Africa: Caregivers’ experience and evaluation of the process and practices in Gauteng

Abstract

Early hearing detection and intervention (EHDI) falls within the broader focus of early childhood development. It encompasses the earliest possible identification, diagnosis and intervention for newborns and infants with hearing impairment. EHDI is recognized as an undeniable right for children with hearing impairment and their families as a cost-effective solution to curb the widely reported communication, cognitive and academic challenges that are consequences of a late-identified hearing impairment. However, evidence within the South African context indicates significant delays in the ages of identification, diagnosis, and intervention due to widely-reported contextual constraints which have resulted in paediatric hearing impairment being viewed as less urgent because it relates more to quality of life than to survival. Family-centred early hearing detection and intervention (FC-EHDI) has been proposed as a means to mitigate the inequalities that exist with accessing EHDI programmes, especially within the South African context. FC-EHDI is the preferred term in paediatric care and has demonstrated positive effects on child outcomes when the family’s role and responsibility is strengthened; caregivers are allowed their rightful position as advocates, decision makers and partners with early intervention (EI) professionals. Although there is an increasing awareness of caregivers’ role in EI; their opinions, views, and role have been marginalised by both the clinical and the research communities. Exploring caregiver views and experiences would lead to EHDI programmes that are contextually-relevant and responsive; evidence-based; and are cognizant of child, caregiver and family needs; and ultimately contribute to positive patient outcomes within this context. Purpose: The primary purpose of this research was to explore caregivers’ experiences and evaluation of the EHDI process and practices in Gauteng, South Africa. Specific objectives included to: describe caregivers’ expectations of the EHDI process, from detection to intervention; describe caregivers’ experience of the EHDI process from detection to 2 intervention; evaluate the success or failure of the EHDI process in relation to caregivers’ expectations; identify barriers and facilitators to the EHDI process from caregivers’ perspectives; describe caregivers’ level of satisfaction with current EHDI programmes; determine caregivers’ perceptions of the extent to which the EHDI services they received are family-centred; explore the association between personal, family and socio-demographic factors and caregivers’ perceptions of family-centeredness of the EHDI services they received; and explore caregivers’ preferences for characteristics associated with EHDI services. Methods: This study employed a mixed methods evaluation design, which comprised of three phases. Phase 1 employed a convergent design, which merged narrative inquiry findings and survey research results to gain insight into the main aim of the study. Phase 2 and Phase 3 employed an explanatory sequential design, whereby the quantitative conjoint analysis results obtained in phase 2 are further explained by the qualitative focus group interview findings in Phase 3. Each research article that forms part of this thesis presents its own specific research design and methodology. Non-probability purposive sampling was used to recruit and select participants. Sixteen caregivers of children with hearing impairment who were enrolled at an EI preschool centre participated in Phase 1 of the study. Thirty-one participants participated in Phase 2 of the study and five participants participated in Phase 3. Data analysis: Narrative interview and focus group interview data were analysed using Reflexive Thematic Analysis; while descriptive statistics, Chi-squared statistic and multinomial logistic regression analysis were used to analyse the quantitative data. All quantitative data were analysed using STATA version 1.5. For each research paper, the specific data analysis procedure used is discussed. Results: Findings from this study provide insight into caregivers’ experiences with EHDI programmes in South Africa. Caregivers reported varied expectations and experiences 3 throughout the EHDI process. The lack of mandated and universal implementation of EHDI programmes resulted in these programmes failing to meet caregivers’ expectations of early identification of their child’s hearing impairment and subsequent timely enrolment in EI programmes. Given the reported late-diagnosis of hearing impairments, EHDI programmes also failed to meet caregivers’ expectations that their child would acquire age-appropriate spoken language skills and be mainstreamed following enrolment in EI. Furthermore, available EHDI programmes were not accessible to caregivers due to services being fragmented, distance challenges, high cost of services, and use of English throughout the EHDI process. Despite EHDI programmes failing to meet caregivers’ expectations, they expressed satisfaction with the support they received during the EHDI process in the form of informational counselling, sign language training, and financial support which enabled them to access EHDI services for their child. The factors that contributed to caregivers’ negative experiences with EHDI programmes were also identified as barriers to accessing EHDI programmes, while the factors that caregivers were satisfied with were identified as facilitators to EHDI programmes in the South African context. Based on the results from the modified MPOC-56 and the narrative interviews (Phase 1), EHDI programmes within the South African context were perceived to be family-centred. However, there are various opportunities to improve these services, particularly aspects (domains) of “respectful and supportive care” and “enabling and partnership”, which both had low sub-scale scores of 5.5 and 5.8, respectively. Furthermore, results of the conjoint analysis (Phase 2 & 3) revealed that caregivers preferred that EHDI services be conducted in their home language (r = 1.609); diagnostic evaluations be conducted at their nearest healthcare facility (r = 0.262); early intervention services be provided at their home ( r = base level); support service be provided as a regular part of early intervention services (r = 4 0.095); and that the cost of EHDI services be decreased in order to ensure affordability of these services (r = 0.262). Conclusion: Current findings emphasise the need to implement comprehensive and universal EHDI programmes within the South African context. With comprehensive and universal implementation of EHDI programmes, there is a need to tailor EHDI services through responsive strategies and inclusive policies. By addressing caregivers’ expectations, experiences, levels of satisfaction, family-centredness, and preferences of EHDI programmes; EHDI programmes can be tailored to ensure quality, effective, and contextually responsive services that enhance the EHDI process, resulting in improved outcomes for children with hearing impairment and their families.