Online peer support:

Lydia Iliffe, a psychology graduate from the University of Sheffield tells us a bit about her MSc project, studying people’s experiences of our very own Alopecia UK online peer support for alopecia. Research into online peer support shows there are benefits for those experiencing a wide range of health issues; however, there is little research into this kind of support for those with alopecia and other skin conditions. People affected by alopecia can experience a negative impact on their psychological well-being. An online support group can be a helpful way for individuals and their family members to share their stories and experiences with fellow sufferers, and online groups can be particularly useful for those who are shy or self-conscious about how they look. 

How did we do this study?

We recruited 12 members of the Alopecia UK Facebook group and invited them to take part in an online interview. The aim was to find out about the benefits that these group members had experienced since joining.  

The usual method for this type of research is “content analysis” in which participant interviews are analysed to identify repeated themes to give an almost numerical set of data. In this case we used “interpretative phenomenological analysis”. This approach also provides themes, but there is an in-depth focus on how the participant has experienced something. To do this, we asked participants for a screenshot of a post published within the group they had found particularly helpful. Then we asked a set of open-ended questions about their experience with the Facebook group and with the screenshot. The participants were free to give as much detail as they wished in order for us to explore their experiences. We then analysed the interviews closely to look for common themes expressed both by individuals and by the group.

What were the main findings of our study?

After analysing the interview transcripts, we came up with four themes: ‘gradual healing’, ‘image concern’, ‘belonging’ and ‘new identity and self-acceptance’. The participants described how the online group has helped them with all aspects of their alopecia from the physical to the emotional. Many describe having alopecia as a journey with the group providing a safe space for them, at whatever point they may find themselves.

The online group enabled them to let go of negative feelings, to share practical tips about dealing with their appearance and different ways of coping, to feel less alone and more normal and to become more accepting of their appearance and more confident socially. A few people reported unhelpful comments and inaccurate advice, which we feel could be explored in future research to help administrators and moderators provide the best experience of online support groups.   

What does this study actually mean for people with alopecia areata?

This research suggests that online peer support can help people to adjust to chronic (long-term) conditions by providing them with peer support, within a safe and private community. Being in contact with others in similar situations could help lessen the psychological impact of a condition such as alopecia, compared to facing it alone. Online groups could be used in combination with other therapies to help people adjusting to life with alopecia.

Please click here to read the full study.

Alopecia UK has a number of private Facebook groups, which are a great source of online peer support. Our main Alopecia UK group is the place for general peer support, sharing experiences and advice on coping with hair loss. We also have a separate Products and Services Chat group for chat about products and services relating to hair loss, such as wigs, headwear, permanent make up and camouflage products. We also have a separate Parents’ Group and Men’s Group.