“Hair is your crown and glory” – Black women’s experiences of living with alopecia and the role of social support

Abstract

Background Alopecia is an autoimmune condition that results in hair loss, mainly from the scalp. There are three specific types of auto-immune alopecia: alopecia areata (AA; small patches of hair loss), alopecia totalis (AT; total hair loss from the scalp) and alopecia universalis (AU; total hair loss from the scalp and body). Whilst research has explored the experiences of White women living with alopecia, there is a lack of research exploring the impact of alopecia on women in the Black community. The current study aimed to explore Black women’s experience of living with autoimmune types of alopecia with a focus on the cultural importance of hair within the Black community and the impact of social support. Participants and procedure Seven Black women (age range: 37-68 years; mean age: 51 years) were recruited purposively through alopecia support group organisations and social media to participate in a semi-structured interview; four participants were diagnosed with AA, two participants were diagnosed with AU, and one participant was diagnosed with AT. One-to-one interviews were conducted online, and interpretative phenomenological analysis was used to guide data collection and analysis. Results Participants discussed the significance of hair specifically within the Black community and the complex relationship be-tween psychological wellbeing, coping and seeking support. Conclusions This novel area, specific to Black women’s psychological experience of alopecia, acknowledges the influence of cultural and ethnic differences. The findings suggest that proactive awareness from health professionals and social support groups are needed due to the nuances of Black women’s alopecia experience to provide better support and to enhance the quality of life for Black women to manage their alopecia.

Keywords

• alopecia
• black women
• culture
• psychosocial
• identity