This year marks 25 years for the Phonak Pediatric Advisory Board. Parent representative, Janet DesGeorges, reflects on the value the board has brought to pediatric hearing care, education, and parental support.
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:
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.