How EB affects brothers and sisters
My name is Dr Sarah Downey, DClinPsy, and I’m a clinical psychologist. I completed my Doctorate in Clinical Psychology in August 2025, supervised by Prof Andrew Thompson at Cardiff University.
Which type of EB did your doctoral research focus on?
My project involved families affected by both epidermolysis bullosa simplex (EBS), the most common type of EB, and dystrophic EB (DEB), the next most common, although families with any EB subtype were welcome to take part. This was important so the findings reflected the wider EB community, not just one group. Since EB can vary so much, even within the same subtype, having a mix of experiences felt more true to what it’s really like to live with EB. I wanted to avoid trying to make everyone’s situation look the same, because that’s just not the reality.
My research focused on understanding what life is like for the brothers and sisters (siblings) of children with EB. The research involved talking with parents and siblings of children with EB to explore what family life is like and how EB shapes everyday experiences. I focused particularly on siblings, asking them about their own experiences and perspectives on EB, and I also asked parents how they thought having a child with EB might impact their children who don’t have the condition.
What difference will your doctorate project make to people living with EB?
The study gives a voice to siblings of children with EB, which has never been done in a piece of research before. Instead, researchers have always asked the parents of children with EB what they thought things may be like for siblings. The research highlights how EB can affect the whole family system, and provides advice to professionals about what they can do to help all members of the family.
Who/what motivated you to carry out your doctorate on EB?
Before starting my clinical psychology doctorate, I worked in services supporting people with health conditions. I noticed that often, there was not the time or resources to consider siblings and the impact of having a health condition in the family on them. Instead, families were usually signposted to more general resources, like young carers’ services. While these are valuable, it made me wonder what we, as healthcare professionals, might be missing by not considering the unique impact a condition within the family can have on siblings.
Families are so interconnected—each person’s wellbeing affects the others—so it didn’t make sense that siblings often weren’t involved in conversations. When the time came to choose a large research project for my doctorate, and I learned that DEBRA wanted to work with a psychologist to explore how to better support siblings of children with EB, it felt like the perfect fit. I jumped at the opportunity to get involved.
What value did the membership involvement from DEBRA UK add to your project?
Membership involvement from DEBRA UK was absolutely vital to my project from the very beginning. DEBRA members supported me in several key ways, which helped ensure my research was relevant and useful to those impacted by EB. Early on, some very kind members spoke with me over the phone or on video calls. These were people living with EB themselves or parents of children with EB. These conversations gave me a much clearer understanding of what daily life with EB is really like, and helped me identify the questions that mattered most to families. They also provided feedback on the interview I designed, making sure it made sense and was sensitive to families’ experiences. Members also took part in the research itself, playing an essential role in the project.
How many members took part and who were they?
A total of 14 people took part in my study: seven parents and seven siblings. Among the parents, there were six mums and one dad. The siblings included four brothers and three sisters, aged between eight and 14 years old. I can’t share their identities to protect their confidentiality, which was a key part of the research. Ensuring participants felt safe to speak openly about their thoughts and experiences, without worrying about hurting someone’s feelings or being judged, was essential. To respect this, I also changed their names in the write-up.
I am so grateful to the people who participated, this is what I wrote about them in my final report:
“First and foremost, I want to express my gratitude to my participants. This research would not have happened without you. It has been a privilege to be able to hear your stories, and I will carry them with me always. Your openness and courage are inspirational. I sincerely hope this work honours your experiences and does justice to your voices.”
What themes were highlighted by DEBRA members during your doctoral research?
The overarching theme from the findings of my research is that although EB influences family life, it does not define it.
There were 4 key findings, which were:
- Seeing things differently: The study showed that parents and siblings don’t always see things the same way. Parents said EB made it harder for siblings to spend time together and made some siblings feel left out, especially when their brother or sister needed bandage changes done. But some parents thought EB brought their children closer together too. Siblings agreed that EB changed family life, but they also thought differences in interests (like hobbies) were part of why they did different things. This shows it’s important to listen to both parents and siblings, because they sometimes see things differently. These different views help each person understand and cope with EB in their own way, but they can also cause misunderstandings in the family about what each person needs.
- Keeping life feeling normal: Siblings and parents often try to make things feel “normal” to help them cope with the challenges of EB. Siblings often acted like EB didn’t bother them much, which helped them deal with the hard parts. Parents thought that EB hadn’t influenced much of brothers’/sisters’ personalities and how they saw the world. Some say that this might mean siblings find it hard to share some of their more difficult their feelings, but others think it’s actually a way to handle stress related to EB – by thinking positively and finding ways to accept what they can’t change. This shows that people cope in different ways, and it’s important for professionals to understand these differences so that siblings and parents get the right support.
- Siblings carrying hidden worries: The study found that siblings saw their brother or sister with EB as needing extra care. Siblings felt responsible and worried about them, but often kept their feelings to themselves. Parents sometimes didn’t notice or weren’t able to support these feelings because they were dealing with a lot themselves. Siblings tried to be strong and not ask for help, so they wouldn’t add to the stress in the family. This shows that parents and professionals need to pay attention to how siblings are feeling, even if they don’t speak up. They might be carrying things on the inside that they need to share.
- Finding their place in the EB world: The study found that parents and siblings felt differently about being part of the EB community. Siblings liked learning about EB and meeting others who understood it. It helped them feel less worried about their brother or sister. Parents found it harder to connect with the EB community. Some felt unsure about being part of it, or worried it might become too big a part of their identity. Siblings didn’t often talk about EB with friends, maybe because they were scared of being left out or didn’t know how to explain it. This shows it’s important to support both siblings and parents in finding the right kind of connection with others, especially because it can help siblings feel less alone.
These findings don’t just apply to EB; they offer valuable lessons for families dealing with a wide range of chronic health conditions.
What will you be doing next?/Has this piece of work influenced the direction of your career?
I am now working on publishing this research so that people all over the world can learn from it.
I’ll be leaving South Wales for England to start a new role as a Specialist Clinical Psychologist working with people affected by Barth Syndrome, a rare genetic condition. My research on EB has been a huge inspiration, showing me how important it is to understand the experiences of families living with rare conditions, insights I’ll carry with me into my clinical work. I’ll also be working in a cleft lip and palate service, and I’m really looking forward to using what I’ve learned to support these families also.
I am so grateful to everyone who has supported me with my research, those who have helped me understand EB, and to the participants who so kindly and generously shared their stories. Thank you.
What these words mean:
Sibling = people born to the same parents; brothers and sisters
Doctorate of Clinical Psychology (DClinPsy) = a three year postgraduate course to learn research and clinical skills
Chronic health conditions = long-lasting health conditions that may not have a cure
Cleft lip and palate = a condition where babies are born with a split in their upper lip and/or roof of their mouth
Barth Syndrome = a rare genetic condition which affects the heart, muscles and the immune system