Alopecia UK recently enlisted the help of researchers Fabio Zucchelli and Nick Sharratt from the Centre for Appearance Research at UWE Bristol, to better understand the experiences and support needs of men with alopecia.

We caught up with Fabio Zucchelli to find out a bit more about the project…

Why did you carry out this research?

I remember meeting Kerry Montgomery and Jen Chambers from Alopecia UK at a conference in July 2019. We each presented our respective work. In my talk, I sheepishly admittedly that most of the research we do in visible differences, including alopecia, massively underrepresents men. This isn’t by design; we just often don’t get many men come forward for our research, perhaps because we’re not asking questions that men can relate to.

So we formed an alliance to learn more about the experiences of men with alopecia, what kind of help and information men would like, how they would like to access it, and what gets in the way of accessing the materials already available to them. That way, Alopecia UK could make their services and materials as male-friendly as possible. And at the same time, we can add much-needed knowledge to the scientific field about the experiences, needs and preferences of men with alopecia.

How did you carry out this study?

Well, we ended up squeezing in two studies! In a nutshell, we sent a big survey to men with any form of alopecia (including androgenetic alopecia), which nearly 200 men completed: roughly half of whom had alopecia areata and half had androgenetic alopecia. We asked men about their experiences of accessing information and help through Alopecia UK and beyond, their preferences, and the impact alopecia had on their lives. Because we know especially little about how alopecia areata impacts men, we also interviewed 18 men with the condition who had taken the survey. In the interviews, we asked men in detail about how alopecia areata had affected them, and how their experiences fitted within society’s views about appearance.

What did you find out?

A lot! But I can cover some key headlines here. We found that men had mainly sought out medical information on the cause and treatment of alopecia, and very few had tried to get psychological support or information. At the same time, when asked to write about their experiences of hair loss, it was clear that many had experienced an impact on their wellbeing and confidence. In men with alopecia areata, this often came in the form of a disrupted sense of identity from the shock of sometimes sudden hair loss. About a third of men with androgenetic alopecia talked about their depleted confidence in terms of feeling less physically attractive. So there was a clear discrepancy: many men encountered psychological problems from alopecia, but very few had sought out help. This can be at least be partly explained by masculine norms which discourage help-seeking. So the challenge is to confront this, and show that it’s ok, and often vital, for men to seek help.

But another question is whether the existing support and information is actually helpful for men. The findings suggest things could be made more male-friendly. In general, men wanted more contact with other men who have alopecia, whether directly (such as through male-only support groups) or indirect (such as via videos with men offering styling tips for alopecia).  

There were many interesting findings from the interviews, too. Men talked about alopecia areata being a largely unknown, underrepresented condition in men, and it often being confused with androgenetic alopecia (or male pattern baldness). Although many of the men felt that alopecia may be harder for women, they also acknowledged how this assumption, which is the common consensus, itself makes having alopecia as a man more minimising and isolating. Some men also talked about feeling like less of a man through alopecia, particularly when were unable to grow facial hair and/or body hair. For some, this had an impact on their sense of attractiveness. Although men often spoke about the challenges that having alopecia areata had caused, some also talked about ways in which they had grown as a person as a result. For some, making sense of their alopecia and coming to terms with it had set a path for great self-awareness and a clearer sense of what matters to them.

What’s next for this work?

We’ve written two journal articles covering the two studies. These are currently under review, and as soon as they’re published, we will share more details about the findings, including on Alopecia UK’s website.

We also produced a report for Alopecia UK going through all the findings and listing a set of recommendations for them to consider in making their services as male-friendly as possible. Kerry and the team are currently working on putting these into practice, with the help of men with alopecia.

Acknowledgements from the authors: Thank you to everyone who gave their time to participate in this study, and to the men who offered their valuable expertise in helping us design the study. The study was funded by the VTCT Foundation (registered charity #1155360; http://www.vtctfoundation.org.uk).  If you have any questions or comments about this study, please contact [email protected], or visit: www.uwe.ac.uk/car.