Engaging with and supporting men with alopecia

By Kerry Montgomery (Alopecia UK) and Fabio Zucchelli (Centre for Appearance Research) with thanks to Nick Sharratt (previously Centre for Appearance Research)

To date the majority of research looking at the psychological impact of alopecia has been conducted with female participants, despite indications that men and women both experience difficulties. This is not unusual and highlights a concern that the research literature is not truly representative of all experiences. We also sought to understand the support needs of men so that Alopecia UK can tailor our resources. We acknowledge there are other groups who are under-represented in research but in this particular study we wanted to target men.

The primary aim of this project was to understand how best to meet the support needs of men with alopecia. To do so, the project team, made up of Alopecia UK staff and researchers from the Centre from Appearance Research (CAR) at UWE Bristol, and with the help of male public contributors with lived experience of alopecia, sought to understand (a) the experiences of men with alopecia in accessing information and support pertaining to their hair loss, (b) the barriers to men engaging with such help, and (c) the broader personal experiences encountered by men with alopecia.

The survey study asked participants – men with alopecia areata or androgenetic alopecia aged 16 and above based in the UK about their experiences of accessing information and support about their hair loss from Alopecia UK and beyond, their preferences for the types of help they could access, and the psychological and social impact of their hair loss. The questions were posed using a combination of quantitative (numerical) rating scales (e.g. satisfaction or interest with a particular type of information) and validated outcome measures (e.g. on general wellbeing), and qualitative (textual) open-ended responses. In total, 197 men took the survey.

The majority of men sought out medical information on the cause and treatment of their condition, whether through Alopecia UK or other services such as online hair loss forums (popular with men with AGA), GPs and dermatologists (commonly accessed by men with AA). Only a minority had sought out information or support for the psychological effect of hair loss. Men across both groups also expressed a desire for clear, reliable and up-to-date medical information, often raised as a way to counter the many unscientific and exploitative online marketing campaigns for hair loss products.

Overall men who had accessed Alopecia UK resources were satisfied with their experiences, but also gave suggestions for improvement to better meet their needs. These suggestions included greater representation of men, appearance tips and styling advice.

Participants with AA also reported moderate levels of anxiety about being negatively judged by others because of their appearance, and men with AGA reported moderate-to-high levels. When participants were invited to write about their personal experiences of hair loss, half of men with AA and AGA talked about a negative impact on their wellbeing and confidence.

The purpose of the interview study was to gain a more in-depth understanding of the personal experiences of men with AA, an underexplored research topic to date. CAR researchers invited nearly 40 participants in total and spoke with 18 men between January and March 2021. The researchers analysed the interview dataset using a qualitative approach called thematic analysis, whereby they systematically searched interview transcripts for patterns of meaning across participants’ accounts. Four themes were generated from the researchers’ analyses

The ‘unknown man’ theme captures participants’ accounts of feeling that male AA is barely visible in mainstream society and poorly understood by most, as well as participants’ own experiences of disguising their hair loss by various means. The ‘contextualised man’ theme, presents participants’ accounts of their experiences as existing in the context of hair loss more broadly, notably in relation to male pattern baldness and women’s experience of AA. ‘The burdened man’ theme gives insight into the challenges faced by men with AA in regards to a disrupted sense of identity following hair loss, heightened self-consciousness about their appearance and loss of confidence. The fourth and final theme, ‘the grown man’, encapsulates the adaptation and personal growth that adjusting to AA fostered for some participants.

This research has allowed Alopecia UK to examine the support needs of men with alopecia to help us tailor our resources. Following the study recommendations Alopecia UK have set up a new section of the website specifically for men. This section, which is due to launch in June, will contain blogs from men and information on aesthetic techniques. In June Alopecia UK will be filming men talking about their experiences of alopecia – this will be a short film for the AUK website. We are also working hard to increase representation of men across the website. This project has allowed the charity to engage with more men, to talk to them and we have seen an increase in men attending our support groups. As a charity we feel we have a clearer picture of men’s support needs and our aim is to continue to increase our resources, for men.