Why parents refuse newborn hearing screening and default on follow-up rescreening--a South African perspective
Lucia Jane Scheepers1, De Wet Swanepoel2, Talita le Roux1
1Department of Speech-Language Pathology and Audiology, University of Pretoria, South Africa.
Insights
High costs and lack of caregiver knowledge are major barriers to newborn hearing screening (NHS) and follow-up in South Africa. Improving coverage requires integrating NHS into birthing packages and enhancing communication for better follow-up rates.
Area of Science:
- Public Health
- Audiology
- Healthcare Management
Background:
- Universal Newborn Hearing Screening (UNHS) programs aim to identify hearing loss early in infants.
- Screening participation and follow-up are critical for the success of UNHS programs.
- Barriers to screening and follow-up can significantly impact program efficacy and child development.
Purpose of the Study:
- To describe screen refusal and follow-up default in South African UNHS programs.
- To identify caregiver reasons for refusing initial screening and defaulting on follow-up appointments.
- To inform strategies for improving UNHS program coverage and effectiveness.
Main Methods:
- A retrospective record review of UNHS at two South African hospitals (n=954 and n=2135 infants).
- Otoacoustic emission screening with a six-week rescreen recommendation for infants with a refer.
- Prospective telephonic interviews with caregivers who declined initial screening or defaulted on follow-up (n=25 each).
Main Results:
- Screening coverage varied significantly (89.3% vs. 57.4%) and was below benchmarks.
- Primary reasons for refusal: costs (72%), caregiver knowledge (64%), and healthcare professional factors (16%).
- Follow-up default reasons: caregiver knowledge (32%), costs (28%), and forgetting (24%); awareness of results/recommendations was low.
Conclusions:
- Screen refusal is largely driven by costs and limited caregiver knowledge.
- Follow-up defaults stem from poor understanding of screening outcomes and recommendations.
- Integrating UNHS into birthing packages and implementing proactive reminders are crucial for improving outcomes.
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.
