Abstract
BACKGROUND: Those affected by alopecia are at risk of experiencing a range of psychosocial consequences. Alopecia UK provides online peer support via facilitated Facebook pages. Online peer support has been found to provide a variety of benefits in other long-term conditions, such as providing information and emotional support. OBJECTIVES: This study sought to gain an experiential account as to how online support provides benefit to people living with alopecia. METHODS: A purposive sample of 12 participants was recruited directly from Alopecia UK's Facebook group. A total of 11 were diagnosed with alopecia and one participant was a family member of someone with alopecia. The qualitative approach of Interpretative Phenomenological Analysis was used to guide data collection and analysis. Participants took part in online synchronous interviews, which drew on review of participant-selected screenshots of online activity. RESULTS: Four themes were identified, including 'gradual healing', 'image concern', 'belonging' and 'new identity and self-acceptance'. The participants made use of the group through expressing emotion, finding practical advice, and also as a place to connect and share experiences. Participants also reported that the online support facilitated the return of social confidence. CONCLUSIONS: This study provides a detailed understanding as to how online peer support groups can be beneficial. Online groups have the potential to create a feeling of belonging, which can develop a sense of being accepted and understood and as such can be important in maintaining psychological well-being. The findings indicate that online groups have the potential to be used as a platform for assisting people in developing both effective coping styles and feeling understood, and such platforms warrant further investment by healthcare professionals. What's already known about this topic? Alopecia may be associated with psychosocial distress due to both the individual impact and the reactions of others. Online peer support is known to be a beneficial method of providing psychosocial support for people living with a range of health conditions. What does this study add? An in-depth view of the benefits experienced through belonging to an online peer support group for those diagnosed with alopecia, in addressing the psychosocial effects experienced with the condition. This research highlights the need for further investigation of the utility of supporting the development of online peer support for people living with skin conditions. Online peer support groups could be highly effective to use in combination with existing psychological therapies to connect others with shared experience. What are the clinical implications of this work? People living with alopecia can benefit from peer support, and healthcare professionals should ensure that patients know where they can gain access to both psychological support and peer support.