“I wouldn’t wish alopecia on my worst enemy” Adolescents’ and Parents’ Experiences of Alopecia

Alopecia is a dermatological disorder where individuals lose some or all of their hair. The condition can occur at any age, but the onset is most prevalent for young people who develop a patch before the age of 20. However, there is limited research on adolescents (aged 10-19) with alopecia generally and very little focused on the perspectives of close relatives. The current study aims to explore alopecia related experiences from the perspectives of parents who have an adolescent child with alopecia and adolescents who are experiencing (or have experienced) alopecia.

Interpretive phenomenology informed the research design and methods of data collection and analysis. Participants were recruited through an advertisement placed on the Alopecia UK website which was also distributed through their newsletters and social media sites. Thirty individuals (15 parents and 15 adolescents) were included and participated in semi-structured email interviews. Each participant was emailed one interview question a week over a six-week period. The sequencing of the interviews and the time delay of questions allowed participants to reflect on their experiences and perceptions in-depth. The interview emails were analysed drawing on interpretive phenomenological concepts, acknowledging life-world existentials and the interpretive nature of the hermeneutic circle. Thematic Analysis was used to highlight key themes across participants’ narratives, pertinent to the lived experience of alopecia in adolescence.

The semi-structured email interviews were successful in eliciting in-depth participant responses. The analysis developed three superordinate themes from the parental interviews: “’the hair is coming out’: living the emotional turmoil of hair loss”; “‘it’s JUST alopecia’: health professionals trivialising the condition”; “Needing to protect the altered appearance”. Two superordinate themes were developed from the adolescent interviews: “Experiencing exclusion and acceptance in peer relationships” and “covering up and coping with an altered appearance”. Some experiences were similarly conveyed across both parental and adolescent accounts, including how alopecia was a gendered experience, shaped by cultural context and the meanings participants attached to hair. Furthermore, the narratives demonstrated that participants experienced great emotional distress, however, health care professionals did not seem to appreciate or acknowledge the impact of this for parents and adolescents. The analysis particularly highlighted how peers were a key contributor to adolescents’ experiences as a facilitator and barrier to well-being.

To my knowledge, this is the first study within the UK to explore the lived experiences of alopecia from both parental and adolescent perspectives within one study using an interpretive phenomenological approach and email interviews. The research findings inform a number of recommendations for practice and future research. Principally, health care professionals need to be better aware of, and responsive to, the psychological/emotional impact of the condition for both parents and adolescents. Parents and adolescents, at the point of diagnosis should be made aware of supportive services that they can access, be reassured that their emotional concerns are valid and where appropriate, be referred to specialist services for psycho-social intervention. Future research that further explores the gendered experiences of alopecia across cultural contexts would develop the evidence base and acknowledge diverse experiences and needs. In addition, research is warranted which evaluates the psycho-social support available for adolescents with alopecia, their parents and other family members. It is possible that the development of tailored psycho-social interventions is warranted, acknowledging the critical stages of adolescent development and the communicative needs, barriers and facilitators between parents, children and peers.