Research Research Home Research Aims Funded Projects Participate in Research Lay Research Panel Research Committee For Researchers Research Our Research Projects Determining the key components of psychological support to facilitate adjustment in individuals with alopecia areata Alopecia UK funds invested: £29,975 When: January 2023 Project type: Psychological research Project Lead: Dr Fabio Zucchelli Collaborators: Dr Kerry Montgomery Length of project: 1 year Research Institute: Centre for Appearance Research, University of the West of England Conditions to be studied: Alopecia areata (AA) - Project funded from legacy funding restricted for AA research Funds being used for: Staff salary, consumables and conference costs Aim of the Project: To develop a usable set of recommendations for providing psychological support, to address the distress associated with Alopecia. What is the project about: Adjusting to having Alopecia Areata can be very challenging. In an appearance-focused culture, hair loss from Alopecia can cause anxiety and feeling low about looking different. Many people in the UK with Alopecia want psychological support to help adjust to the condition, but are often dissatisfied with what the NHS offer. The science doesn’t give much direction about what type of psychological support helps most. From existing research, we do know that there are unique challenges that come with Alopecia, like what hair loss means to people, using (or not using) wigs, and changes to self-identity and feeling attractive. It is important that people with Alopecia are offered psychological support that takes account of these experiences. To build a clearer picture of the key ingredients needed to help people adjust, we will learn from two types of experts. One type is people with alopecia who have struggled to adjust and received psychological support for this. This group can give valuable first-hand accounts of what helped them, how it helped them, and their preferences for how it should be given, as well as what they would have liked (if it didn’t help them). The second type is experts by profession. These are psychological professionals, GPs and dermatologists who have worked with people who have Alopecia. They have the theoretical and practical expertise. How will the research be done: We will use a ‘Delphi’ research method to form agreement between experts on the key ingredients of psychological support for Alopecia. This will involve three rounds of online surveys, in which experts will give their views, then rate which ingredients of psychological support are most important. This will produce a list of key elements of psychological support, which we will then translate into recommendations. We will share these recommendations widely with people working in the NHS, charities like Alopecia UK, private clinicians, and people with Alopecia. It will also give us the evidence to apply for more funding to create and test an intervention based on these recommendations. Who is leading the project: Dr Fabio Zucchelli is a Research Fellow at the University of the West of England in Bristol. Since 2016, he has worked at the Centre for Appearance Research, and has conducted multiple studies on the psychological impact of numerous conditions that affect appearance. Since 2020 he has worked on multiple projects specifically on alopecia. In collaboration with Alopecia UK, he analysed and reported a survey of individuals with alopecia on their experiences of NHS services. He co-wrote a report to Alopecia UK and is lead author on a peer-reviewed publication currently under review. He also collaborated with Alopecia UK to secure funding for a 2-year project from the Vocational Training Charitable Trust Foundation, investigating 200 men’s experiences of alopecia. He was first author on the funder’s report and a peer-reviewed publication in the Health Psychology Open Journal. This work is also described on a blog on our website. Most recently, he has again collaborated with Alopecia UK on a Pfizer-funded study quantifying the socioeconomic burden of alopecia areata (AA). Update (July 2024): Many people in the UK with Alopecia (Areata) want psychological support to help adjust to the condition, but are often dissatisfied with what the NHS offer. Psychological support can be seen as the role of all care providers, including general practitioners and dermatologists, mental health professionals, trained peer supporters and trichologists. Our aim was to develop a usable set of recommendations for these care providers to promote wellbeing in individuals with Alopecia. To do this, we formed a panel of around 50 experts made up to two types. One was people with Alopecia who have struggled to adjust and received psychological support for this: ‘experts by experience’. The second were the care providers, or ‘experts by support role’. We used a systematic method for gaining these experts’ views on what matters most to promoting wellbeing in people with Alopecia. This created a list of 25 possible recommendations. We then asked them to decide which were the most important, and the most relevant to each support role. This created different recommendations for each support role. There was crossover between the different versions, but also differences. For example, medical professionals felt it was important for them to help manage people’s expectations about Alopecia outcomes (e.g. concerning possible hair regrowth). Mental health professionals instead felt it was important for them to help people prepare for these different possible outcomes, and to tolerate uncertainty. Some recommendations were in all versions: “Validate (and explore) the emotional impact of AA”, “Respect and work with individuals' chosen coping strategies (where no clear harm is caused)”, and “There should be a holistic, multi-support-role & multisector approach to psychological support”. The findings suggest that validating and exploring the emotional impact that AA can have on individuals is the primary recommendation for care providers. By validating, we mean care providers making it clear to people that their concerns are real and matter. The recommendations will be shared with organisations for the different care provider roles, such as the British Hair and Nail Society and Alopecia UK (for trained peer supporters). They will also be available from Alopecia UK’s website. We are also preparing a scientific article to be published in a journal that allows anyone to read it (i.e. ‘open access’). A real strength of the study was how practical it was. Rather than creating or testing theories, we asked experts by experience and support role to help shape recommendations that they consider important to promoting wellbeing in people with Alopecia. People with Alopecia were therefore at the centre for developing the recommendations, alongside the care providers who will use them. Some groups of people were under-represented in the expert panel despite efforts to gain a representative group. People of black and Asian ethnicity were under-represented compared to the UK population, as were men. The needs of children and young people with Alopecia were also not covered as fully as we would have liked. So more research is needed to better understand what help people from these groups would like. Dr Zucchelli has written a blog about this research, which can be found here. This also includes links to the recommendations this research produced.