Tell Us What You Want: What Underserved Parents Need to Follow-up with New Jersey's Early Hearing Detection and Intervention Program

Background and Purpose: Early Hearing Detection and Intervention (EHDI) programs are public health efforts to identify hearing loss in infancy so affected children can reach developmental milestones in a timely manner. Lack of timely follow-up is a national problem, and New Jersey is no exception. Previous research has identified a constellation of maternal factors that are indicative of being late to or lost to follow-up, including well-known social determinants of health (SDOH). The current study posed the question, “What do underserved parents need that could encourage follow-up in NJ’s EHDI program?”

Method: We completed 26 in-depth interviews with parents who possessed characteristics of being at-risk for delayed or no follow-up, including families with multiple SDOH. The sample was recruited through social media and by contacting families enrolled in state-funded programs managed by the Department of Health, including WIC and Head Start. Eligibility requirements included having a child under age 6 who was born in New Jersey. There was no requirement that the child had hearing loss; however, the child had to be referred for additional audiological care after discharge from the birthing facility. Thematic analysis was used to analyze the data. During analysis, a thematic map was developed that was edited and fine-tuned by members of the research team until consensus was formed.

Results: We identified three themes based on our interviews. Practical needs emerged as barriers that parents had to address in order to attend follow-up appointments. These included everyday problems such as finding a provider that accepted the family’s insurance, long wait times associated with Medicaid providers, finding baby sitters for other children, transportation difficulties, and managing multiple medical appointments for infants with complicated medical backgrounds.

The second theme was that parents need hearing health information prior to the birth of their babies and throughout the EHDI process. Parents indicated that they needed more and clearer information than they were provided about EHDI services as well as hearing loss. In the busy-ness of postnatal care, many parents did not remember getting information about their baby’s hearing screenings or what they needed to do next. Other parents reported receiving information, but it was conveyed using medical jargon that was not easily understood.

The final theme was that parents need emotional support in decision-making. Parents reported receiving information or having to make decisions that scared them, particularly if screening/testing results might be indicative of hearing loss. Parents specifically requested support to process test results and allay fears so that they could make informed healthcare decisions for their babies.

Conclusions and Implications: Underserved parents appear to have unmet needs that could serve as barriers to timely follow-up in NJ’s EHDI program. Social workers could play a key role in addressing unmet needs as the profession is specifically trained to help clients address practical needs, provide information in a way that clients can readily understand, and to provide emotional support in difficult situations. Results from this study could be used to help identify interventions to better serve this population.