title: The HI HOPES data set of deaf children under the age of 6 in South Africa: maternal suspicion, age of identification and newborn hearing screening.
abstract: BACKGROUND
  Identification 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.
  
  
  METHODS
  Secondary 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.
  
  
  RESULTS
  The 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.
  
  
  CONCLUSIONS
  Targeted 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.
authors.affiliation: Centre for Deaf Studies, University of the Witwatersrand, Wozani Building, Education Campus, 27 St Andrew's Road, Parktown, Johannesburg, South Africa.
authors.forename: Claudine
authors.initials: C
authors.lastname: Störbeck
authors.affiliation: School of Nursing, Midwifery and Social Work, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester, UK. alys.young@manchester.ac.uk.
authors.forename: Alys
authors.initials: A
authors.lastname: Young
mesh_terms: D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D016208:Databases, Factual; D003638:Deafness / Q000175:diagnosis* / Q000534:rehabilitation; D042241:Early Diagnosis; D018479:Early Intervention, Educational; D005189:False Positive Reactions; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008137:Longitudinal Studies; D008297:Male; D009035:Mothers; D015997:Neonatal Screening; D011787:Quality of Health Care; D013019:South Africa
keywords: Age of identification; Deaf infants; Maternal suspicion; Newborn hearing screening; South Africa