Investigating the Family and Child’s Experience of Microtia and Hearing Loss
This piece of work is part of a PhD conducted by Saira Hussain, Aston University (supervised by Dr. Helen Pryce and Dr. Amanda Hall). The research grant provided by Microtia UK has paid for Saira’s PhD fees and covered travel expenses within this study.
What did we investigate?
Microtia affects 1 in 6000 newborns, yet there is very little research conducted on the experience of children and young adults living with the condition, as well as those of parents. Families have various options to explore regarding hearing amplification and potential surgical or cosmetic procedures.
What did we do?
We interviewed parents and young people online and in person. Using interviews through a qualitative process, we were able to get in-depth personal accounts about the experience of living with microtia or caring for a child with microtia.
11 children and young people with microtia were interviewed, as well as 12 parents. The age ranges of the young people ranged from 7 through to 20 to capture a range of experiences. Parents shared their experiences too and we had 9 mothers and 3 fathers in total.
The interview responses from all the participants were then analysed and key categories topics were grouped together into categories. We then developed a framework to show how the different aspects fit together and how this could be used to describe the journey for other children and families with microtia.
What did we find?
Microtia is a complex condition, and children, young people and their parents are constantly thinking about what it means for their lives. In this study we called this process “reconciling microtia”. It describes how young people and parents make sense of the condition at different stages and use new information to help them do this.
There are many decisions to make, such as whether to try hearing aids, and these depend on how much microtia affects the child at the time. Parents support young people having a say in these choices. Families often look online or use social networks for information, but there are very few resources specifically for young people with microtia. Participants said having these would be very helpful when making decisions.
What are the next steps?
The next stage is to develop resources, including videos and written materials, for children, young people, parents and families, as well as healthcare professionals. These will share insights about microtia from different perspectives.
We are very grateful to all the families and young people who took part in the study, as their experiences and input have been invaluable in shaping this work. We will continue to involve families, young people and clinicians in creating the content to make sure it is relevant and useful. Once complete, the resources will be published on the Microtia webpage so that everyone can access them and raise awareness.
You can hear all about this research on the SashaSays… Podcast: “What Families Need to Know About Microtia”
The full research paper can be found here.
Published in 2026.