Living with alopecia areata: An online qualitative survey study

Davey, Louise; Clarke, Victoria; Jenkinson, Elizabeth

Abstract

© 2018 British Association of Dermatologists 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.

• Journal Article Type: Article
• Acceptance Date: Nov 28, 2018
• Online Publication Date: Nov 30, 2018
• Publication Date: Jun 1, 2019
• Deposit Date: Dec 10, 2018
• Publicly Available Date: Dec 1, 2019
• Journal: British Journal of Dermatology
• Print ISSN: 0007-0963
• Electronic ISSN: 1365-2133
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 180
• Issue: 6
• Pages: 1377-1389
• DOI: https://doi.org/10.1111/bjd.17463
• Public URL: https://uwe-repository.worktribe.com/output/856525
• Publisher URL: https://doi.org/10.1111/bjd.17463
• Additional Information: Additional Information : This is the peer reviewed version of the following article: [Davey, L. , Clarke, V. and Jenkinson, E. (2018) Living with alopecia areata: An online qualitative survey study. British Journal of Dermatology. ISSN 0007-0963 Available from: http://eprints.uwe.ac.uk/38762], which has been published in final form at https://doi.org/10.1111/bjd.17463. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.
• Contract Date: Dec 10, 2018