Data management for early hearing detection and intervention in South Africa

Abstract

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.

Knowledge and cultural beliefs of mothers regarding the risk factors of infant hearing loss and awareness of audiology services

“… 12 , 50 Furthermore, the manner in which parents are informed about hearing screening, available management options as well as who gives them the information is important. 51 Recommendations that are associated with social stigmatization, or that offend cultural norms, could result in loss to follow-up. 51 As an example, there is considerable stigma attached to taking relatively healthy young children for hearing testing.…”

“… 51 Recommendations that are associated with social stigmatization, or that offend cultural norms, could result in loss to follow-up. 51 As an example, there is considerable stigma attached to taking relatively healthy young children for hearing testing. 52 However, parental education has been found to be effective in modifying health seeking behavior and reducing non-compliance in developing contexts, despite low education and literacy levels.…”

The hearing screening experiences and practices of primary health care nurses: Indications for referral based on high-risk factors and community views about hearing loss

“…The data collection instrument was developed by the researcher based on the literature and was adapted from the studies by Moodley and Storbeck 26 and Joubert and Casoojee. 32 The risk factors were obtained from the JCIH list of high-risk factors (JCIH 2007), 5 HPCSA EHDI position statement (HPCSA 2007) and Olusanya.…”

“…In addition, nurses understand the cultural and linguistic backgrounds of the communities they work in and are knowledgeable about some of the high-risk factors associated with hearing loss. 26 Nurses can also serve as intermediaries between caregivers, the doctor and the referral source. 26 Furthermore, parents’ or families’ myths, cultural beliefs and societal practices related to the causes and treatment of hearing loss also influence their choice of practitioners and health-seeking behaviours, irrespective of educational level or social standing, and can further delay identifying and intervening for this disability.…”

“…Additionally, in a diverse and multicultural context, such as SA, the manner in which parents are informed about hearing screening, the available treatment options and who gives them the information is very important. 26 Managing and monitoring hearing is within the scope of practice for PHC nurses, as the South African Nursing Council 29 notes that they are responsible for maintaining the sensory functions in patients, which includes hearing. Maintaining hearing can be effectively achieved by implementing hearing screening and detection in PHC clinics.…”