A parent’s perspective on the Phonak Pediatric Advisory Board

I have had the privilege of representing the ‘parent voice’ on the Phonak Pediatric Advisory Board for over twelve years. At any table, or on any project, I have learned that diversity of perspectives, whether they be through a lens of culture, country, profession, or lived experience, can enhance outcomes.

During advisory board discussions, I have shared the perspective of a parent who has lived the journey of raising a child who is Deaf/Hard of Hearing. I must admit in the early days, I wasn’t sure I was at the right table. When the conversations turned scientific, I felt out of my league in my own knowledge of the science behind technology.

I have sat through technical conversations about the Desired Sensation Level (DSL) method or Wide Dynamic Range Compression and waited for a moment where something began to make sense to me in terms of how this science made a difference in the lives of families. I once made a joke to a room full of researchers and pediatric experts in hearing care that, as a parent, what I first paid attention to when my child was fit with hearing aids was the selection of colors.

Benefits of a parent perspective

It is so rewarding to both learn and share my experiences in the ‘real world’ of living with a child whose amplification is a part of her connection to day-to-day life. Not only have I been in awe of the ’brains’ behind the research and technology, but also the representation of professional board members who see families daily in their clinics – and the respect and partnership they show in their conversations about families.

During meetings, I have openly shared topics that I believe are important for families, such as resources to ensure informed decision making, parent-to-parent support, and Deaf/Hard of Hearing Adult to family support. My contributions are always met with much appreciation and have led to the creation of some valuable resources, such as:

• Parent Guide for understanding best practice recommendations for children with unilateral hearing loss
• Parent Guide for parent-professional partnerships in the hearing healthcare setting
• Childhood Hearing Loss Question Prompt List (QPL) for Parents

I think having a parent representative on a scientific committee like this is unique and shows the dedication and commitment of Phonak to ensure that in the end, it is the family/consumer that is the central core of the work being done to improve lives.

I would like to take this opportunity to encourage others to add the parent voice to their advisory boards. Pulling together different voices and perspectives is best practice. It has been a wonderful journey serving on this Board, and I look forward to the work we can continue in the future.