Living with alopecia areata: an online qualitative survey study

Abstract

Summary Background Living with alopecia areata (AA) totalis and universalis (collectively referred to here as AA) involves unpredictable, sometimes rapid hair loss. There is currently no effective treatment and patients describe feelings of shock, loss, trauma and disrupted identity. Cultural meanings attached to hair and hair loss, including associations between hair and femininity, and hair loss and cancer may exacerbate distress. Consequently, wigs and make‐up are frequently used as camouflage, but this can produce feelings of inauthenticity, shame and anxiety. Objectives This article explores how meanings associated with hair and hair loss influence experiences of living with AA. We also aim to identify how this understanding might inform practice by healthcare professionals to best support patients to cope with the condition. Methods A total of 95 participants with AA completed an online qualitative survey about their experiences of living with the condition. Data were subjected to thematic analysis within a critical realist theoretical framework. Results The following four themes were identified: (i) It's (not) only hair; (ii) A restricted life; (iii) Abandon hope all ye who lose their hair and (iv) Seeking support in ‘a highly personal journey’. Conclusions Findings suggest that negative cultural meanings of hair and hair loss are pervasive and may drive social avoidance and camouflage behaviours in people with AA. Normalizing social interactions with healthcare practitioners, significant others and peers were cited as pivotal to positive adjustment. Support groups and online forums were highly valued particularly as few had been offered specialist psychological support. Future research should develop and evaluate psychological support in order to address the specific challenges of living with AA.

Acknowledging the impact of hair loss

“…The use of thematic analysis within a critical realistic framework is an appropriate qualitative method, as it recognizes the importance of the social context in which experiences (such as hair loss) occur and how the interpretation of these experiences are influenced by social and cultural meanings attached to hair and hair loss. For example, Davey et al . extend on previous research by demonstrating conflict between the need to view hair loss as ‘only hair’ while managing complex social meanings attached to hair relating to vitality and femininity.…”

“…In this issue of the BJD , Davey et al . explore the psychological impact of alopecia and how personal meanings of hair and hair loss influence how individuals cope and emotionally adjust to their condition.…”

“…Recent calls in the BJD for more high‐quality qualitative research emphasize the role such research can offer to dermatology research and its practice . The study by Davey et al . provides an excellent exemplar of high‐quality and rigorous qualitative research and captures new insights into people's experiences of living with a visible skin condition, as well as identifying unmet support needs and processes that could help improve current patient care.…”

Take 10: ten qualitative studies on under‐researched groups and hard‐to‐reach issues in dermatology

“…Authors responded to our challenge with a wider range of submissions and almost double the number submitted last time, showing the growing interest in qualitative research in this field. Our second spotlight for summer 2019 showcases 10 studies, comprising a complementary mix of six original articles and four research letters . These papers involve interdisciplinary authorship teams from dermatology, psychology, general practice, nursing, public health and applied health services research in Australia, Germany, the Netherlands, the Republic of Ireland, the U.K. and the U.S.A.…”

“…Six papers, demonstrate qualitative methods’ capacity to access psychological and social issues that are difficult to reach with traditional questionnaire/survey research, and the capability to investigate the portrayal and experience of the skin in the online world. Fox et al .…”