Why parents refuse newborn hearing screening and default on follow-up rescreening--a South African perspective.

OBJECTIVES This study describes screen refusal and follow-up default characteristics together with caregiver reasons for screen refusal and follow-up default in two South African universal newborn hearing screening programs. METHODS A retrospective record review of universal newborn hearing screening conducted at two hospitals (Hospital A n = 954 infants; Hospital B n = 2135) over a 31-33 month period. Otoacoustic emission screening was conducted with rescreen recommended within six weeks for a uni- or bilateral refer. Program efficacy was described according to coverage, referral and follow-up rates. A prospective telephonic interview with caregivers who declined the initial screen (n = 25) and who defaulted on follow-up (n = 25) constituted the next study component. Caregivers were randomly selected from the screening programs for a survey related to reasons for newborn hearing screening refusal and follow-up default. RESULTS Screening coverage (89.3% Hospital A; 57.4% Hospital B), initial referral rates (11.6% Hospital A; 21.2% Hospital B) and follow-up return rates (56.1% Hospital A; 35.8% Hospital B) differed significantly between hospitals and were below benchmarks. The most frequent reasons for screen refusal were related to costs (72%), caregiver knowledge of newborn hearing screening (64%) and health care professional knowledge and team collaboration (16%). Almost all caregivers (96%) indicated that if costs had been included in the birthing package or covered by medical insurance they would have agreed to newborn hearing screening. Reasons for follow-up default were most commonly related to caregiver knowledge of newborn hearing screening (32%) and costs (28%). One in four caregivers (24%) defaulted on follow-up because they forgot to bring their infant for a rescreen. Only half of caregivers (48%) who defaulted on follow-up reported being aware of initial screen results while 60% reported being aware of the recommended follow-up rescreen. CONCLUSION Caregivers most commonly refused screening due to associated costs and mostly defaulted on follow-up due to an apparent lack of knowledge regarding initial screen outcome and recommendations made for follow-up. Including NHS as a mandated birthing service is essential if coverage is to be increased, while reducing follow-up defaults requires proactive reminders and improved communication with caregivers.