Title: SKINS: an online resource for young people with common skin problems
Funder: Department of Health (England)

Abstract: BACKGROUND Skin conditions, particularly acne, alopecia, eczema and psoriasis, are very common in young people and are known to adversely affect many aspects of their lives. Non-adherence to treatment in adolescence can be a problem and lead to further complications in early adulthood. The main aim of the study is to improve understanding of young people’s experiences of four long term skin conditions (acne, alopecia, eczema and psoriasis) and produce a new ‘Skins’ section on www.healthtalkonline.org (HTO), for those with skin conditions, their families, friends, schoolmates and the professionals involved in their care. RESEARCH QUESTIONS What are the experiences,and information and support needs of young people with long-term skin conditions? What influences their self-management strategies and their help-seeking behaviours? In what ways does a website based on young people’s accounts of their experiences of skin conditions meet these information and support needs? How can it be used to provide educational materials for health professionals in training and school teachers of PHSE? PLAN OF INVESTIGATION Using rigorous, established methods we will conduct in-depth qualitative interviews with a diverse, national sample of around 100 young people with experience of one or more of four skin conditions; acne, eczema, alopecia and psoriasis. Thematic analyses of the main topics will be undertaken and verified by a research buddy/supervisor. In addition to peer reviewed publications, we will disseminate key findings from the interviews on a new ‘Skins’ section of the award-winning healthtalkonline.org website. Researchers will write 15-20 topic summaries for four sub-sections covering each of the skin conditions, and around 5-10 overarching summaries about the issues taht are common to them all. Around 1000 video and audio clips will be selected to illustrate distinct and shared issues across the four conditions. Interview extracts and other resources will be prepared as ‘scrapbooks’ for a learning and teaching resource. In addition, 10 digital stories will be created for use in PSHE lessons in secondary schools. A draft version of the site will be evaluated by members of target user groups using methods developed as part of the PI’s NIHR Programme grant for applied research. POTENTIAL BENEFITS TO PATIENTS AND NHS Qualitative studies produce rich data with the potential to inform and support patients, professionals and policy makers about what it is like to experience and manage health conditions. However, too often their findings are only available in academic publications. This proposal maximises the potential value of the research for patients and the NHS by publishing the most important findings on an established, well-used and trusted website for patients, families, health and social care professionals and policy-makers. We will also use print media and journal articles to bring findings to the attention of clinical audiences, young people and parents. The ‘Skins’ website at www.healthtalkonline.org will be designed to provide support, reassurance and information for young people with skin conditions and offer a point of peer reference for young people. It will further have educational benefit in highlighting the risks involved in not adhering to treatment and offering strategies and tips for more effective self-management. The ‘Skins’ website is intended primarily: a) for young people with skin conditions and b) health and social care professionals, particularly those in training and continuing education. In the ‘scrapbook’ section of the website we will encourage other users of the site to create and share their own scrapbooks (this will allow teachers to share resources through crowd sourcing from site users). www.healthtalkonline.org is promoted through social media and advertised via posters and leaflets to maximise universal access and help to overcome the digital divide. It currently receives 6.5 million hits per month.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: SKIN