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).