Developing support for parents and carers of children with appearance affecting injuries

My name is Maia Thornton and I am a PhD Researcher based at the Centre for Appearance Research (CAR), UWE Bristol. I am in the second year of a PhD focussed on developing support for parents and carers of children with appearance affecting conditions or injuries, such as burn injuries. My PhD is a series of research studies designed to help me to better understand the experience of caring for a child with an appearance affecting condition or injury.

Children’s Burns Trust has been and continues to be very supportive of my work and the work of my colleagues at CAR. I had the pleasure of attending the Children’s Burns Trust’s first parent conference last October, where I had the opportunity to meet and speak with many parents about their experiences and where they felt there are gaps in support for parents. Parents from this community have kindly taken part in the research that I have carried out so far and I wanted to take this opportunity to provide an update on where I am and the next steps for this work.

The research

My research aims to build an understanding of the experiences of parents and carers of children with a condition or injury that affects their appearance in some way, for example, a burn injury. Using the experiences shared by parents, I aim to identify areas where parents might need a bit more support and to develop support to meet those needs.

So far I have carried out interviews and focus groups with parents of children with a wide range of appearance affecting conditions and injuries. I asked these parents to talk about their experiences, any challenges they had faced as a family and any support they might have received. I also spoke to health and support professionals who provide care, advice or support to these parents.

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 injury event. 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 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 in helping me to understand parent experiences and support needs, which informed the next steps of the research.

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 currently open and it would be really helpful to hear the experiences of parents of burn-injured children. If your child is aged 0-18 years and you would be interested in taking part, please click this link to go directly to the survey: https://bit.ly/2DiZmuU. There is an information page at the beginning of the survey, so you can find out more details before you decide whether you would like to take part. Alternatively, you can find out more about the project by watching this video: https://youtu.be/anjdM6B2QwI.

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. There is also an opportunity to enter into a prize draw to win a £50 Amazon voucher at the end of the survey, as a thank you for your time.

Both parents and multiple carers within a single-family are welcome to take part so please feel free to share the link with anyone who you think may be interested.

If you have any questions about this project, please don’t hesitate to get in touch with me at Maia.thornton@uwe.ac.uk.

A huge thank you to Children’s Burns Trust for advertising this research and to all the parents who have given up their time to share their stories with me.