People with alopecia understand better than anyone how much a condition that affects appearance can impact someone’s life. However, it can be hard to know how to give people the support needed to deal with their challenges. To better support people with alopecia, and other visible differences, we must first better understand which aspects of life people have difficulties with. At the Centre for Appearance Research in Bristol (CAR), a team of researchers, led by Professor Diana Harcourt and Associate Professor Amy Slater, work with the visible difference community to understand the psychological impacts of having such conditions. They also use these findings to produce materials to support those with visible differences and their loved ones.

The work on visible differences at the University of the West of England, Bristol is funded by a grant from the Vocational Training Charitable Trust Foundation (VTCT Foundation). Through a Priority Settings Partnership, the most important questions from people with all kinds of visible differences were established. These questions form the basis for the research carried out. But it is important that research is carried out with the people that have lived experience, to make sure it can achieve meaningful impact for the people that matter most. Over the last few years, people with alopecia have been an integral part of the research at CAR, as they provided input on the design of research projects, reviewed questionnaires and information sheets, and shared their lived experiences through interviews and focus groups.

One of the first collaborations between Alopecia UK and CAR came when Dr Nick Sharratt involved people with alopecia in a study on the challenges of intimate relationships for those with appearance affecting conditions. This work led to the development of support materials in the form of a set of 7 podcast episodes, that feature discussions on navigating the romantic landscape with an (in)visible difference. They discuss questions like: What might be some common concerns that people with a visible difference have about dating and romantic relationships? How do you manage difficult thoughts and feelings?  When do you disclose to someone you have alopecia? How do you choose to tell them? The podcasts also include practical guidance on how to manage these challenges and include exercises to help manage difficult thoughts and feelings that arise for them in situations related to intimacy and romantic relationships. These podcasts will be evaluated in 2023 and they will be available for adults with alopecia to listen to as part of the evaluation, which will be conducted by Dr Maia Thornton.

Support for families

Members of the Alopecia UK community were also recently involved in another project led by Dr Thornton, studying the experiences of parents of children with a visible difference. In 2020, she wrote about her work in a blog. By talking to parents in interviews and focus groups, she was able to learn what psychological and social challenges had caused them worry or distress, and how they had dealt with these challenges. She is now using the lessons from this research to produce support materials that will help other parents deal with these challenges. Maia will be evaluating these support materials during 2023 and they will be made widely available for parents to access as part of this evaluation. Maia spoke about the importance of supporting parents and carers of children with Alopecia:

It’s so important that parents have access to support which not only provides guidance on how best to support their child, but also how to look after their own wellbeing. I am so grateful for all the support from members of the Alopecia UK community with this work and look forward to sharing these new support materials soon.

 

Dr Fabio Zucchelli and Dr Maia Thornton with a research poster on the study of men’s experiences of AA.

 

Understanding the key components of psychological support

In 2021, Alopecia UK collaborated with Dr Fabio Zucchelli to investigate the experiences of men with alopecia (both areata and androgenetic), via a survey and a follow-up interview with men who have AA. As there had been very little research on this topic before, this study provided valuable insights into what aspects of life men experience difficulties with because of their alopecia. The interview part of the study, focusing exclusively on men with AA, was published in the Health Psychology Open Journal earlier this year and Fabio also wrote a blog for us summarising this work. Following the publication of this study, we have had several men come forward wishing to tell their alopecia story in blogs on our website. This further goes to show there is strength in knowing other people are going through similar experiences. Fabio and the team of co-authors have also submitted an article for publication based on the survey – so watch this space!

During this year’s round of Research Pots, Dr Zucchelli successfully applied for funding from Alopecia UK to undertake a study investigating the key components of psychological support that are currently offered to people with alopecia areata. Starting in 2023, he hopes to identify which aspects are understood by practitioners and people with AA as beneficial – and which aren’t – to allow healthcare professionals to provide better support. Fabio told us:

I’m very excited to get started on this project, which will basically involve forming a consensus from experts on what forms the best recipe for psychological support for people with alopecia areata. And by experts, we mean experts not just by profession but also from personal experience of living with – and adjusting to – alopecia.

 

Alopecia UK CEO, Sue Schilling, with Professor Diana Harcourt at the Centre for Appearance Research.

 

Visible differences in social media

When used in the right way, social media can be a powerful tool to connect people with similar experiences, provide support, raise awareness, and change perceptions. Dr Ella Guest’s research aims to understand how social media can be used to increase acceptance of appearance diversity and reduce appearance-related stigma. She also hopes to learn how people with visible differences are already using social media to normalise being different and show what they are like as a person. Ella told us:

We often read about the dangers of social media, but it can also be a powerful and inexpensive way to raise awareness, provide support, and reduce stigma towards conditions that affect appearance. My colleagues Dr Amy Slater, Abbi Mathews and I are working to understand how social media can best be used by people with conditions that affect how they look, and how to develop social media campaigns that are effective at reducing stigma in the general population. This is important because it will help improve the lives of people with visible differences and reduce the stigma and discrimination they often face.

 

People with alopecia will continue to be an integral part of the research on visible differences at CAR. To hear about future opportunities to take part in research, keep an eye on our Participate in Research section or sign up to our mailing list by registering for an account on our website and ticking the option for ‘Research Opportunities’.