By Sarah Downey

My name is Sarah Downey and I am a trainee clinical psychologist in South Wales. The training programme is funded by NHS Wales and is based at Cardiff University.

 

Which aspect of EB are you most interested in?

As a psychologist, a key part of my role is supporting people’s mental health and wellbeing. The nature of EB means that the physical symptoms affect many aspects of individuals’ lives. It makes sense therefore, that it is important to consider the emotional and psychological impact which these physical symptoms can have also. I am particularly interested in how the networks around an individual can support and impact their wellbeing, and how families adapt to living with EB. Alongside this, I am keen to understand what families and particularly children and young people impacted by EB would find helpful from organisations and clinicians like me. I hope to give siblings an opportunity to share their story and in turn, to understand more about how we can support family members of those living with EB.

 

What difference will your work make to people living with EB?

I hope that my work will give a voice to the brothers and sisters (siblings) of those living with EB. Currently, to my knowledge, there is no research which represents the views of siblings. Instead, existing research has asked parents what they think about how EB impacts the siblings of those who have it. Although parents can make a good guess at what it might be like for these children, because no one has directly asked them in a formal piece of research, we don’t actually know what siblings think! I hope that my research will highlight the importance of considering all family members when providing support. Also, I know that parents who have children with EB and children without EB worry about how EB impacts the life of the child(ren) without the condition. I hope my research will provide some clarity on this.

 

Who/what inspired you to work on EB?

I previously worked in a cleft lip and palate service as an assistant psychologist. This role showed me both the resilience families and children can show in the face of long-term health conditions, but also the many challenges families can experience. I first learned about EB when trying to decide what I should research as part of my training. DEBRA UK had enquired about research opportunities within my training programme and once I began researching EB, I was taken aback by the many aspects of life which EB can affect, but also the resilience the families I spoke to and read about showed. I was also struck by the lack of research around the psychological impact of EB and how to support those affected and their families. For these reasons, I feel strongly that spending time researching EB is very valuable.

 

What does the involvement with DEBRA UK mean to you?

Collaborating with DEBRA UK opened the door into the world of EB. With DEBRA UK’s support, I have been able to make contact with families and other stakeholders to consult on my research and learn more about EB and how I can best use my research to support those affected. The idea of research focusing on the siblings of children living with EB actually came from DEBRA UK. The key findings of their 2023 Insight Study highlighted a need for greater awareness of EB as well as more mental health support, and studying the views of siblings will help to fill this gap. So, without input from DEBRA UK representatives my research project wouldn’t be happening! Working with DEBRA UK will also be key when recruiting people to my research, as DEBRA UK will help me advertise the research to ensure the opportunity to take part is shared with as many people in the EB community as possible. If your child with EB also has a brother or sister aged 7-11 years old without EB, you could take part in my project.

 

What does a day in your life as an EB researcher look like?

Each day I spend on research looks different. I will often spend time reviewing the current literature on the social and emotional impact of EB. I also find the DEBRA social media helpful for keeping up to date with the latest updates.

Meeting with my research supervisors is an important part of my day as they each hold expert knowledge in a variety of areas such as skin conditions and child health. We often discuss how the research should be conducted and think about how to ensure it is scientifically rigorous and suitable and engaging for children and young people. One of my favourite parts of my research role is meeting with the individuals and family members living with EB who share their thoughts and opinions as experts by experience. This really brings the research alive, provides insight into the reality of living with EB and shines light on what is important for me to consider when researching EB.

 

Who’s on your team and what do they do to support your EB research?

My research team consists of myself, three clinical psychologists and several experts by experience. Professor Andrew Thompson is my lead supervisor. He specialises in researching skin conditions from a psychological perspective and also has a specific interest in developing resources to support parents of children living with skin conditions.

Dr Nicola Birdsey and Dr Gary Burgess are secondary supervisors for the project. Dr Birdsey specialises in supporting children and families with health conditions and research with children. Dr Burgess works in the EB specialist team based in Great Ormond Street Hospital providing psychological intervention to children, young people and families living with EB. This combination of knowledge helps ensure the research is being completed to a high standard. The experts by experience are families who have kindly volunteered to review and advise on my research. I will discuss ideas with them and receive feedback on documents I plan to use in my research. This insight helps me to ensure my research is relevant to those in the EB community.

 

How do you relax when you’re not working on EB?

In the colder months, you will often find me trying out all the great places to eat around Bristol where there is always something new to try. During the spring/summer however, I enjoy getting outdoors on hikes and paddleboarding. I am also currently training to run the Cardiff half marathon for DEBRA UK, so a lot of my free time is spent running at the moment!

 

What these words mean:

Sibling = a brother or sister

Cleft lip and palate = where a person’s top lip and roof of their mouth have not formed properly

Psychologist = someone who studies and supports mental health

 

Full glossary of scientific terms

 

If your child with EB also has a brother or sister aged 7-11 years old without EB, you could take part in Sarah's project. This research project has been ethically approved by Cardiff University.