A Qualitative Exploration of Alopecia: Impact, Coping and Interactions with Professionals

Abstract

Background: Alopecia relates to hair loss. This thesis focuses on types of Alopecia mainly believed to be triggered by an autoimmune response, such as Alopecia areata (AA). Although Alopecia is not a life threatening condition, it can be a life changing condition. Hair is often described as an important part of our identity. Therefore, Alopecia can have devastating effects on overall quality of life and, for the majority, negatively impact both psychological and social functioning. Despite the literature on the psychological and social impacts of Alopecia, many medical professionals still view it as a ‘cosmetic condition’, which affects how those with Alopecia experience interactions with medical professionals. Method: A critical realist research position was used to qualitatively explore Alopecia in relation to its impact, coping and interactions with professionals. This study engaged in semi-structured interviews with 23 adults with Alopecia. Data were analysed using Reflexive Thematic Analysis (RTA). Results: An inductive RTA was used to develop three themes; ‘Navigating Alopecia: A rollercoaster of change’, ‘Surviving Alopecia: With or without you’ and ‘Understanding patient-professional relationships’. Participants described experiencing several fluctuations in identity, a range of negative emotions and struggles with the ongoing uncertainty. Participants voiced how Alopecia can limit social interactions and impact engagement in activities or hobbies they enjoyed prior to Alopecia. A range of coping strategies were highlighted including camouflaging or use of humour. Participants voiced how they felt understood by some of those close to them but also acknowledged that not everyone knows what to say or do, leaving them feeling misunderstood. However, participants indicated that others with lived experience of Alopecia tended to be more understanding which helped normalise the difficult experiences. Factors that affect help-seeking decision-making were highlighted and participants shared their experiences of professional interactions and suggested improvements. Conclusions & Implications: The impacts of Alopecia go well beyond the ‘cosmetic’ or medical realms. This study adds to the body of evidence indicating the psychological and social impacts of Alopecia and the need for medical professionals to treat people more holistically. Support and care recommendations made by those with lived experience of Alopecia should be taken seriously to avoid exacerbating an already distressing condition. Implications exist for medical professionals, clinical psychologists, wider Alopecia treatment guidelines, and for those who experience Alopecia. Several recommendations are made that aim to move Alopecia support and care forward.