Maia Thornton, a PhD student from the Centre for Appearance Research, at the University of the West of England, tells us a bit about her current research.

Why are you doing this research?

Research suggests that conditions and injuries that have an impact on appearance can present psychological and social difficulties for both the individual with the affected appearance and for those around them. Parents have an enormous role and responsibility in the caring for a child or young person and in preparing them for their adult life. Research with parents of children who have conditions affecting the appearance of the face, like cleft lip and palate, has shown that parents can in fact experience challenges related to their child’s condition or injury. However, little research has been done with parents of children outside of these specific groups. As a result, parents of children with conditions such as Alopecia have received little research attention and as such their support needs may not be clearly understood.

What is the project about?

As a PhD researcher based at the Centre for Appearance Research at UWE, Bristol, my work is focussed on addressing this gap and developing evidence-based support for parents of children and young people with a wide range of appearance affecting conditions and injuries. In order to do this, I have begun by conducting research to better understand the experiences of parents of children with different appearance affecting conditions and injuries, including Alopecia.  

In 2019 I conducted interviews and focus groups with parents and carers of children with appearance affecting conditions. I also interviewed health and support professionals who work in positions to provide care, advice or support to these parents.

Alopecia UK kindly advertised this initial study and many of the parents who expressed interest and went on to participate were parents of children with Alopecia. I want to say a huge thank you to Alopecia UK and to the many parents from the Alopecia UK community who took the time to share their stories with me.

In these interviews and focus groups parents talked about times when they were upset or distressed. For some parents, these feelings were part of an initial shock reaction to their child’s diagnosis or initial appearance change. For example, for parents of children with Alopecia many described the first time their child lost their hair. Parents also talked about feelings of guilt and worry. Some parents also spoke about coming through this distress and worry and feeling more hopeful.  

Parents spoke about the worries they had about their child experiencing social challenges e.g. bullying, teasing or social exclusion. They talked about wanting to prepare their child for this. Parents emphasised that building confidence and resilience in their children was important to them. Professionals also said that this was a concern that parents often raised. 

So what’s next?

The insights gained from the interviews and focus groups were really valuable and helped me to better understand the experiences of parents and carers of children with a variety of conditions and injuries, including Alopecia.

Using the findings from the interviews and focus groups, I have designed an online survey to explore the topics discussed in the interviews and focus groups in greater depth and with a larger number of parents. The online survey covers a number of topics including parenting experiences, how parents manage challenges related to their child’s condition or injury and parents’ thoughts and feelings about their child’s condition or injury. 

The survey is has now closed. The findings from this survey study will help us to make decisions about the development of future support and anyone who participates will help to contribute to this. 

If you have any questions about any of the above, please don’t hesitate to get in touch with me at [email protected]  

A huge thank you to Alopecia UK for advertising this research and to all the parents who have volunteered to take part and shared their stories with me.