I Wouldn't Wish Alopecia on My Worst Enemy: Adolescents' and Parents' Experiences of Alopecia

This study explored the experiences of adolescents with alopecia and their parents using interpretive phenomenology and semi-structured email interviews with 30 participants (15 parents and 15 adolescents). The analysis revealed themes of emotional turmoil, trivialization by health professionals, and the need to protect altered appearances for parents, while adolescents experienced exclusion, acceptance, and coping with altered appearances. Both groups faced emotional distress, often unacknowledged by healthcare providers, with peers playing a significant role in adolescents' well-being. The study highlighted the need for healthcare professionals to recognize the psychological impact of alopecia and recommended providing access to supportive services and psycho-social interventions. Future research should explore gendered experiences and evaluate psycho-social support for affected families.