The SKINS project: young people’s experiences of acne, eczema, psoriasis and alopecia
By Abi McNiven
Researchers at University of Oxford, in partnership with the DIPEx charity, have been running a project on young people’s experiences of skin conditions (acne, eczema, psoriasis, alopecia). The study involved interviewing 97 young people aged between 13-24 years about their experiences of having a dermatological condition to produce new resources on Healthtalk.org. Researcher, Dr Abi McNiven, writes here about the study and the online resources now available.
I joined the Health Experiences Research Group (HERG) at the University of Oxford in late 2014 and began working on an ambitious new project about young people’s experiences of four common skin conditions: acne, eczema, psoriasis and alopecia. Having personal experience of both acne and eczema, the psychosocial impact of skin conditions is a topic I felt strongly about when I arrived to the research. This commitment to highlighting the impact that skin conditions can have only grew stronger and stronger as I heard the stories of 97 young people in the UK who volunteered to take part in the project.
Some readers will not be surprised to hear that many of the people we interviewed had experienced difficulties because of their skin conditions. Sometimes the distress was due to the condition itself causing them pain and discomfort (itchiness, soreness, throbbing or stinging, flaky skin, loose hair) or because the treatments had unpleasant aspects to them (sticky and smelly topical creams, stinging the skin, painful procedures, medicine side-effects). Often, though, the thing that hurt the young people most about their skin/hair condition was the way it made them feel about themselves and the way others might think about or behave towards them. As Harry, a participant who was interviewed about having alopecia since the age of 14, explained:
“It’s a journey. I don’t think any one [person’s experience] is the same. […] There’s ups and downs. And I felt like at first it was down when I was first losing my hair before I shaved it. It was just down, down, down. There was no up-side to that whatsoever. After I shaved my head I’d say it made me feel better, a bit better, and then I lost my eyebrows and it was down again. And I just think the emotional bit is the fact that you’re out of control and the fact that you can’t do [anything about] it. I think that’s the hardest thing.”
The emotional impact of having a skin condition could ripple across all aspects of a young person’s life. In particular, adolescence and young adulthood is often seen as a time when lots of changes and new experiences are happening – for example, changing schools, starting college or university, getting a job, moving out, having relationships, building friendships, socialising and hobbies. When Abbie was interviewed about having acne since age 13, she talked about the relationship between stress in her wider life and acne symptoms and treatments affecting one another:
“It used to stress me out a lot, like all the exams like plus me having acne as well and I was doing all the treatments and things. And it was quite a build-up of things [which] kind of made [it] worse. And especially when I went on the Accutane [isotretinoin tablets], cos then I got the side-effects. And obviously Sixth Form, cos I started A-levels. So it was all a big like change. And that was all quite stressful as well. So I think the acne didn’t help with that either.”
The multiple layers of young people’s lives can mean that the practical and emotional energy involved in a skin condition can have a huge impact on young people’s sense of identity. Tania, a participant who has had eczema since she was 4 years old, found that make-up irritated her eczema but that being unable to wear it was difficult when she was younger:
“I just wanted to do what everyone else was doing cos I was that age when everyone wore the same clothes, awful clothes, and everyone was like trying make-up for the first time and everyone was kissing boys for the first time. And I just wanted to be doing all of that. And because I couldn’t do the make-up thing, then I felt like I’ve been robbed of everything. I felt like all of that was because of the lack of make-up and therefore the double lack of confidence, it all kind of started to knock onto all the other stuff.”
The project was unusually large for a qualitative study: conducting the interviews, analysing the data and writing website content illustrated with hundreds of clips from the interviews was quite a task. Thanks to the generosity of the participants in sharing their experiences, four in-depth resources for Healthtalk.org have been created and evaluated before being officially launched at an event in Oxford on the 3rd April 2017. These four resources combine both factual medical information and a range of personal experiences for the benefit of other young people affected by skin/hair conditions, their families and friends, and, importantly for improving medical and social care, health professionals seeking more insight into what it’s like for the young people they see with these conditions. This latter aspect was a key point made by Louis who had a post-viral episode of psoriasis lasting two months when he was 18 years old:
“It’s a strange experience to just walk in [to a GP’s or dermatologist’s] and just sort of be this rash. So I think for anyone who’s coming into contact with someone who’s got a skin condition, whether they’re a GP or whether they’re a friend, whether they’re a stranger – try to think that this person isn’t just a rash or a boil or a whatever. They are a person who happens to have this quite inconvenient problem with their skin. And they’d much rather you treated them as the person they are than just a skin condition.”
The website sections are resources offering information about the conditions and what it’s like for young people, taking into account the wider context of their lives (e.g. their social lives, friendships, relationships, hobbies, school/university and work). We hope that the websites will be a source of support for young people affected in finding out about the experiences of others. The resources can also help medical professionals more fully understand the specific information and support needs of young patients with skin/hair conditions, to further medical teaching and training.
By Dr Abi McNiven
All the clips featured in this post, and many more, can be found on the Healthtalk.org websites:
This article summarises independent research funded by the National Institute for Health Research (NIHR) under Grant Reference Number PB-PG-0213-30006. The views expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health.