RP202 - Barriers to Timely Follow-Up From New Jersey’s EHDI Program

Abstract:
Infants whose families possess multiple marginalized identities are at risk of being lost or late to follow-up in universal efforts to screen and treat hearing loss in infants. This puts young children at risk for language acquisition and social skills delays. This qualitative study explored barriers to follow-up audiological care in at-risk families in New Jersey. Using thematic analysis, this research uncovered two significant findings: 1) hospital personnel downplay the possibility of hearing loss, and 2) parents need more straightforward and in-depth information because they have little prior experience with hearing loss. Recommendations are made to remediate the problem.

Objective and Rationale:
Identify hearing loss in infancy so affected young children can reach developmental milestones on time.  Lack of timely follow-up is a national problem, and NJ is no exception.  Previous research has identified a constellation of maternal factors indicative of being late to or lost to follow-up.  The current study asked, "What barriers exist to follow-up for those most at-risk?"

Method:
We completed 25 in-depth 35-45 Zoom interviews with parents who possessed characteristics of being at risk for delayed or no follow-up.  The sample was recruited in various ways, including through social media and the Department of Health's database of families involved in the state's WIC program and Head Start.  Parents were eligible to participate in the study if they had a child under six born in New Jersey and were told at the birthing facility that their infant needed additional hearing testing that should be completed after discharge.  
During the screening process, we obtained information about the participating parent's race, level of education, insurance status, and whether the family was involved in the state's WIC program.  Information was also gathered about whether the family followed up with recommended screening/testing, whether the child was diagnosed with hearing loss, and if so, the child's age at diagnosis, the type of loss, and severity.  Parents were invited to participate if they possessed multiple characteristics (established in a previous study by Zeitlin et al., 2021) that put them at greater risk for non-compliance.  Thematic analysis, as described by Braun and Clarke (2006), was utilized to analyze the data.  Codes were produced inductively with no a priori assumptions.  Once initial codes were identified, they were consolidated into focused codes.  The transcripts were independently evaluated, applying both the focused codes and new codes as they were recognized.  A "thematic map" was created throughout the process, illustrating the relationship between codes found in the data.  Finally, the team met to consolidate the thematic map and finalize themes.

One theme is that hospital personnel downplay the possibility of hearing loss, so parents may not feel an urgency to follow up.  The second theme is that parents have little prior experience with hearing loss.  As a result, they rely on physicians' recommendations more than they might for other health-related conditions.  The information parents receive from physicians is often incorrect or laden with technical terms.  As a result, parents have difficulty understanding what is happening and how they should follow up.  Additionally, parents are worried about disability.  In their desperation to get relevant information, parents often search the internet and social media.

Conclusions:
Further insight into follow-up complications can be explored by conducting groundbreaking theory research.  By identifying barriers to timely follow-up from NJ's EHDI program for those most at-risk, we will recommend developing and testing interventions to remediate the problem.