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Since little information is available on the outcome of early hearing intervention programs in South Africa, this article examines data on infants and families registered with a family-centred, home-based intervention program (HI HOPES) over a 12-month period in order to track the effectiveness of the holistic unbiased support to families of infants and toddlers with a hearing-loss. The aim of HI HOPES, which is based on the SKI-HI model of early intervention in the USA, is to ensure that families are enabled to make informed choices for their unique infant. Data were gathered on 32 infants ages birth to three years and their families using both qualitative and quantitative measures which included analysis of demographic data, quarterly language assessments, and parent satisfaction surveys. The report on the pilot year of this early intervention program shows that, though the sample is small, there is significant improvement in infant receptive and expressive language for infants identified before seven months of age, as well as a high level of satisfaction from families who have received services.

Introduction: Internationally, newborn hearing screening is becoming part of standard neonatal healthcare service guidelines for the implementation of early hearing detection and intervention (EHDI) initiatives, including screening, diagnosis, data management and intervention. Data management includes the processes of data collection and storage thereof, as well as analysis and interpretation of data to guide the future planning, implementation and evaluation of EHDI programmes. There have been limited studies on data management in the South African EHDI context.Methods: The aim of this study was to determine the type of data management systems in use in South Africa and whether they allow for cross-disciplinary sharing and evaluation of the EHDI processes. A survey instrument on the management of EHDI data was developed and sent to HI HOPES referral agents in both public and private sectors.Results: A return rate of 80% was achieved, with 19 (59%) public sector and 13 (41%) private sector audiologists participating in the study. The data revealed that there was no uniform data management system in use nationally, and no consistent shared system within the public or private sectors. The majority of respondents (44%) used a paper-based system for data recording. No institutions were using data management systems that enabled sharing of information with other medical professionals.Conclusion: Data management and tracking of the pathway from screening to diagnosis to intervention is necessary to ensure quality care and outcomes for children identified with hearing loss. International studies reveal the importance of effective implementation of data management systems; however, to date these have focussed on developed country contexts. Data management challenges identified in this study reflect international challenges as well as challenges unique to a developing country context.

BackgroundIdentification of deafness before 3 months of age substantially improves the socio-linguistic and cognitive development of deaf children. Existing studies demonstrating the feasibility of newborn hearing screening in South Africa have used small samples unrepresentative of general population characteristics. This study establishes the characteristics of the largest data set of deaf infants and their families in South Africa on which there is baseline and longitudinal data (n = 532); explores its representativeness in terms of socio-demographic features and reports on access to and quality of newborn hearing screening within the sample. It examines specifically the relationship between age of maternal suspicion of childhood deafness and age of identification of deafness by cohort characteristics.MethodsSecondary analysis, using descriptive and inferential statistics, of a pre-existing longitudinal data set (n = 532) of deaf infants under 6 years of age, and their families, collected as routine monitoring of the HI HOPES (HH) early intervention programme.ResultsThe HH cohort is representative in terms of racial profile and private/public health care use but displays slightly higher level of maternal education and slightly lower socio-economic status than national comparators. 102 out of 532 infants had undergone newborn hearing screening, resulting in 29 true positives, 15 of whom would have met the criteria for targeted screening. Later onset deafness does not account for the 73 false negatives. The median age of maternal suspicion (n = 247) of infant deafness was 18 months; the median age of identification of 28 months. Age of identification was unrelated to private/public health care status. The median delay between age of suspicion and age of identification was significantly longer in the public sector (7 m; IQR 0–15 m) compared to the private sector (2 m; IQR 0–8.5 m) (p = 0.035). Age of suspicion was unrelated to level of maternal education. Earlier age of suspicion did not predict earlier identification.ConclusionTargeted screening as timely response to maternal suspicion offers a viable means to reduce substantially the age of identification of deafness in South Africa until implementation of newborn hearing screening on a population-wide basis can be justified.