Shifting the Narrative: Infusing Louisiana Early Hearing Detection and Intervention Products with Deaf Culture

Background:

Over 90% of deaf children are born to hearing parents. For most parents, hearing screening is their first introduction to deafness. While many providers push for children to get cochlear implants and other hearing devices, many members of the Deaf community believe that deafness isn’t a disease that needs to be cured. Further, supports for language development among deaf and hard of hearing children have been historically limited, resulting in language deprivation. These opposing views, coupled with systems-level neglect, have fostered distrust between the Deaf community and healthcare systems.

Program background:

The Bureau of Family Health (BFH)’s Louisiana Early Hearing Detection and Intervention Program (EHDI) is responsible for ensuring all newborns in Louisiana receive a hearing screening, as well as follow-up testing and intervention services if needed. The BFH communications team worked collaboratively with EHDI and the Louisiana Commission for the Deaf to create and update communications products for the program. The goals were to communicate program information and reframe the narrative so parents and providers viewed deafness in a more positive light.

We took a strengths-based approach to explain the importance of hearing screening and how it can impact a child’s language and communication skills. We focused on promoting verbal and non-verbal communication as a way to bond with your child, and replaced potentially stigmatizing words/terms with neutral or positive ones. Vibrant colors and photos were used to make communications products more approachable and welcoming.

Evaluation Methods and Results:

To ensure we incorporated the Deaf perspective, we created a work group with members of the EHDI advisory council (members include Deaf representatives, parents of D/deaf children, audiologists, physicians, and hospital administrators). The materials went through multiple rounds of review before receiving council approval.

We also tested products with our target audience to ensure the new messaging was effective. We performed audience intercept testing at three community clinics across the state. Early feedback indicated a positive reception.

Conclusions:

It is important to move from a deficit-based perspective to a strengths-based one, and to eliminate negative terms to create more positive messaging. This process is a major upfront time investment, but once the messaging is established, it can be spread and used across multiple platforms.

Including the Deaf community in this work and making sure their perspectives were reflected in the materials was essential for breaking down barriers and building trust. When creating this messaging, we also accounted for the fact that parents are likely hearing different terms from their providers – finding a balance between fighting stigma and creating easy-to-understand, accurate messaging was critical.

Implications for research and/or practice:

Building trust between the Deaf community and providers is a step towards reducing healthcare inequities. Incorporating the voice of your target audience into public facing materials can help break down barriers and makes messaging more credible. This process illuminated inconsistencies in language used about the Deaf community versus terms used by the community, and highlighted a need for provider education. Lessons learned from this can be applied to all special needs populations and contribute to reducing health disparities over time.