Maia Thornton shares findings (see below) from an online survey conducted with parents of children with appearance-affecting conditions, like microtia. She is now developing new support materials for parents/carers and we can’t wait to see them.
Exploring the experience of parents and carers of children with appearance affecting conditions or injuries
Online survey results summary
We greatly appreciate the time taken by all the participants to share their experiences. In total, 233 parents and carers completed the online survey. The questions within the survey were informed by parents and health professionals during previous in-depth interviews and focus groups.
The results found that there may be challenging experiences that make a parent more likely to experience difficult emotions, such as stress and anxiety. This might include things like their child experiencing social challenges, like teasing. Parents might also be worried about communicating with their child about their condition and this can also cause them to feel worried or stressed.
It was also found that certain things might prevent parents from feeling these kinds of difficult emotions. This might include feeling knowledgeable about their child’s condition and feeling confident in their ability to support their child.
These results have given us a better understanding parents and carers’ experiences of parenting children with appearance affecting conditions and injuries.
Using what we have learnt, the research team will now begin to design and develop new support materials for parents and carers. This will be done alongside a group of parent advisors to gain their advice and guidance on what kind of support would be beneficial.
Thank you again to everyone who took part in this study. This work could not be done without you and we are very grateful for your input.
This research was funded by the University of the West of England and supported by the Vocational Training Charitable Trust Foundation.