Scene: A routine IEP meeting regarding a student with hearing loss.
Attendees: family, educators, administrators, and other team members, including an audiologist.
Each team member begins by sharing updates. For her part, the audiologist shares her records confirming that the student has been optimally amplified throughout the school day. The student has assumed responsibility for daily hearing aids checks; he is successfully managing his FM equipment; he knows how to obtain fresh batteries and back-up aids and FMs as the need arises. The audiologist regularly checks all devices and trains others how to do so as well. All best practices are implemented to ensure auditory access to school life.
And when school life ends for the day, and the student heads home and into the world … are the ‘ears’ still on? During my years as an educational audiologist, I knew that for many students, the answer was no. While my reports were always appreciated, sometimes they did not generate much interest. Wondering what it might mean, I asked a question here and there and soon learned that for many children, the only time they used amplification was at school. A quick calculation told me that the number of unamplified hours (after school, weekends, holiday breaks, summer vacations) far outweighed amplified school hours. In the meantime, many children were falling behind academically and socially. Although unable to correlate their limited advancement to school-only hearing aid use, surely it mattered. I had to ask myself, what did I miss??
It is only somewhat reassuring to know that other pediatric audiologists have the same concern: what did we miss when a family, although clearly understanding their child’s diagnosis and the importance of aided hearing, is not yet fully committed to our recommendations? What is holding them back, and how can we help? It can feel as if an unconscious denial-type decision was made to occupy two parallel worlds: (1) ‘school world’, wherein hearing loss is fully managed by others, and (2) ‘family world’, wherein hearing loss is inconsequential and can be generally overlooked. All the while, audiologists are unaware that parents are headed in this direction, and therefore miss an opportunity to intervene before decisions become hard-wired.
To improve our effectiveness in these circumstances, a group of pediatric audiologists has developed a new communication aid designed to encourage a different, hopefully therapeutic, conversation with families. The Childhood Hearing Loss Question Prompt List (CHL-QPL) exemplifies family-centeredness: it was built and endorsed by parents and is designed to give families conversational control, with an invitation to discuss what matters most to them. From their questions, we may learn about doubts, unresolved guilt, grief, or fears, and offer support as they approach decision crossroads (and respectfully point out that even inaction is a decision). We may find that a parent just needs a receptive listener and acceptance; or we may need to honor our professional boundaries and point the family toward qualified counselors.
Either way, we hope to replace “What did I miss?” with “I would have missed this issue, but we are working on it now.” We look forward to user feedback!
To learn more about The Childhood Hearing Loss Question Prompt List, please read this recent article in the Hearing Review.