We are a group of researchers in the School of Psychology, Cardiff University, Wales, United Kingdom. The research in the school spans the breadth of psychology with 10 interlinking themes that include focus on health, neuroscience, and mental health. Our team is led by Professor Andrew Thompson, a consultant clinical and health psychologist with longstanding experience in investigating the psychosocial issues associated with skin conditions. ‘Psychosocial’ refers to the way a person’s mental health is affected by the society they live in and the environment around them. The co-applicant on this project is Dr Faith Martin, a psychologist with expertise in supporting carers and parents and Dr Olivia Hughes is the research associate employed to work on the project. Olivia’s PhD focused on psychological issues associated with skin conditions in childhood.

 

Which aspect of EB are you most interested in?

We are most interested in the psychological impact EB can have on the families of children affected by the condition, particularly parents and caregivers who oversee their treatment and carry out the daily care of their skin. We are passionate about working towards improving access to psychosocial support for families and are excited to have the opportunity to collaborate with DEBRA UK.

 

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

We know there is a lack of psychological support for people with all kinds of skin conditions, but there is a gap in services for families and children. We hope to make a meaningful contribution by creating an easily-accessible resource that can be hosted on the DEBRA UK website and will be freely available for all parents of children living with any form of EB.

 

Who/what inspired you to work on EB?

Andrew has had a research interest in the field of psychodermatology and visible difference for many years. ‘Psychodermatology ’ combines the study of the mind (psyche) and the skin (derma) and relates to how skin conditions can affect a person’s mental health, as well as how mental health can affect a person’s skin. Before taking up his current position at Cardiff University, he worked at the University of Sheffield as Director of Clinical Psychology Training Research, and ran an NHS psychodermatology IAPT service. IAPT stands for Improving Access to Psychological Therapies and has now been renamed as NHS Talking Therapies. Andrew has worked closely with a number of skin condition charities and professional bodies in the past and he is passionate about raising the profile of the needs of people living with skin conditions and contributing to work likely to inform NHS practice and policy.

Faith has an extensive background working with people affected by long-term conditions in both clinical practice and her research. She has co-developed self-management resources to support a wide range of people, including those affected by cancer, parents of young people with cancer, parents of young people with autism, and parents of young people who self-harm. Faith has worked in various clinical and research roles with young people experiencing different difficulties, which led to her passion to improving support for parents.

Olivia completed her PhD at Cardiff University and her thesis focused on delivering mindfulness to parents of children with a range of common and rare skin conditions. Olivia’s research focuses on the field of psychodermatology, and she is passionate about increasing awareness of the challenges of living with a condition that affects the skin. Olivia’s interest in supporting people with skin conditions, such as EB, has been driven by her own personal experience of living with severe psoriasis since childhood. Psoriasis is a skin condition caused by skin cells being made too quickly and building up into flaky patches that can be sore or itchy.

 

What does the funding from DEBRA UK mean to you?

The funding from DEBRA UK means that we can combine our shared interest in psychology and dermatology to work with the charity and other experts by experience to increase psychosocial support resources for families affected by EB.

 

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

We are lucky to be based in the School of Psychology, near Cardiff town centre. Our offices are in Tower Building and have lovely views over the Welsh city.

Andrew is currently the NHS Programme Director of the South Wales Clinical Psychology training programme and has overall responsibility for delivery of clinical psychology and applied associate psychology training across South, Mid, and West Wales. As a Consultant Clinical Psychologist, Andrew balances his clinical work with being an investigator on a number of research projects. In relation to this project, Andrew’s key role is liaising with Olivia to guide the running of the project and to oversee the clinical content alongside Faith. The role also involves liaising with DEBRA UK and ensuring that the project conforms to expected ethical and governance requirements.

Alongside this project, Faith works as a Clinical and Health Psychologist with people living with Long COVID in Gloucestershire. She is a Senior Lecturer in the School of Psychology, Cardiff University, where her other research focuses on supporting parents of young people with mental health problems, and understanding and addressing the experiences of self-harm and suicidality in young people and the impact on their families in Rwanda.

As a post-doctoral researcher, Olivia works on planning each phase of the toolkit development, investigating different design ideas for the final resource, and analysing data as it is collected.

Our team often give lectures and deliver workshops to trainees on psychodermatology and are keen to increase awareness of the psychological impact of skin conditions.

 

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

We are a small team, but we have a wide range of experience. Andrew and Faith are clinical psychologists with extensive backgrounds in psychodermatology and experience of developing interventions. Olivia completed her PhD investigating online support for families affected by skin conditions using mindfulness, and is an expert-by-experience after growing up with a chronic skin disease. We also have close working relationships with other researchers both in the school of psychology and in medicine. Andrew is currently collaborating on other projects too, investigating psychological and neurodevelopmental features of rare skin conditions. He is also supervising a postgraduate clinical psychology trainee, Sarah Downey, on another project about the family experience of EB.

 

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

Andrew likes to jog, go to the gym, read, and spend time with his family. He’ll be running with Sarah Downey in this Autumn’s Cardiff Half Marathon.

Faith enjoys spending time with her family and getting out on long walks.

As well as seeing family and friends, Olivia has two golden retrievers and likes to go walking on the beaches in Gower.

 

 

What these words mean:

Psychologist = someone who studies and supports mental health

Psychodermatology = study of skin and mental health

Psoriasis = a condition where skin cells multiple too quickly and create patches that can be sore, itchy and flaky

Mindfulness = a psychological approach that helps people develop more awareness of their feelings, without judgement

 

Full glossary of scientific terms