Amrit Bhatti, a psychology graduate from the University of Huddersfield, tells us a bit more about her PhD project that explored adolescents’ and parents’ experiences of alopecia.

Why did we do this study?

My interest in this area comes from my own experiences of an aunt who had alopecia. I had witnessed closely, how much the loss of hair can affect not only my aunt but the whole family. I began to explore studies surrounding alopecia generally and found that this area was severely under-researched, especially for young people. There was lots of research around chemotherapy-induced alopecia, yet we know these experiences are very different. We also discovered that there was a high likelihood of young people developing patches of alopecia under the age of 20, yet studies were mainly focused on adults. As a result, we wanted to know what it was like for an adolescent to have alopecia. We also explored what it is was for parents to have a child with alopecia. From this, we could see how to best support the whole family.

How did we do this study?

Rather than using quantitative analysis which creates a numerical set of results, we wanted to use interviews to capture these unique and emotive experiences.

We recruited 15 parents and 15 adolescents through the Alopecia UK website (including social media) and invited them to take part in an online interview. Parents and adolescents were emailed one interview question a week over six weeks, along with further questions based on their replies. From the interviews, we developed themes based on what was said. This was using a method called “thematic analysis” which was underpinned by “interpretative phenomenological analysis” to really capture individual experiences in more depth.

What were the main findings of our study?

From the parent interviews, we developed three themes:

1. ‘The hair is coming out’: living the emotional turmoil of hair loss
2. ‘It’s JUST alopecia’: health professionals trivialising the condition
3. Needing to protect the altered appearance.

From the adolescent interviews, we developed two themes:

1. 'Experiencing exclusion and acceptance in peer relationships'
2. 'Covering up and coping with an altered appearance'

We also found that some experiences were similar across both parents and adolescents.  The findings showed that losing hair was difficult; however, health care professionals did not seem to appreciate or acknowledge the impact of alopecia. Often, they were told that it is "JUST hair" or "cosmetic", yet we know it is much more! 

Name-calling and bullying was a significant issue. Having the right kind of support from those of a similar age was the most effective. Parents and adolescents within our study found that talking to friends and asking for their opinions was really helpful. They liked to talk to their friends online and wanted to connect with those who had alopecia too.

Interestingly, the study also found that alopecia was a gendered experience, meaning that girls and boys appeared to cope with their alopecia differently. In particular, wigs were often used by girls, but not by boys. Also, hair loss on other parts of the body received mixed reactions depending on their gender and what was viewed as "masculine" and "feminine".

What does this study actually mean?

We feel our research findings have provided us with some useful recommendations. Importantly, health care professionals need to be better aware of, and responsive to, the emotional impact of alopecia. We feel those who experience the condition should be reassured that their emotional concerns are valid and should avoid words such as "JUST alopecia" and "cosmetic". 

Despite schools being aware of bullying-related experiences, we know that it is still ongoing. It is important to encourage discussions between support services, schools and parents. We feel schools should actively be involved with charities such as Alopecia UK and hold regular meetings with the family to help the adolescent feel safe and supported.

Thank you Amrit for choosing to focus your PhD on alopecia. We were pleased to support with finding participants for this study. Reviewing the findings of Amrit's study, we are delighted that we have received funding from the British Association of Dermatologists to develop Schools Packs which we hope will tackle some of the issues raised. Read more here.