Sources of information and support about acne
Types of information
The type of information people wanted varied, from scientific information about acne or acne treatments, to other people’s stories. Most people wanted general information (examples, facts, advice) about the different products available for acne and “tips on how to deal with it”. But a few people had particular concerns that led them to search for information such as make-up tips for covering up acne or reviews of good GPs and dermatologists to see. Alexandra had acne on her back and wanted information about bras with alternatively placed straps so that she could be more comfortable.
What people often valued most was hearing other people’s personal experiences. For example, it could be useful to hear about what treatments had worked for others, how their skin had reacted to different creams, and even whether people regretted taking or not taking particular treatment options such as isotretinoin and the contraceptive pill. With the many sources of information available to them (online, through GPs and from friends and family), most people found relevant advice. But the wide variety of information could make it hard to get a clear answer, and some people got conflicting information or advice. For example, Tom had heard from friends that diet was an important contributing factor to acne but his GP told him it was not the case. Devan mentioned to his GP things he had read on the NHS website about acne and his doctor told him that he shouldn’t look online about acne. There were also gaps in the information available. Both Hester and Devan found a lot of the information they were looking for on US websites and it was hard to tell whether the information about different skincare products and support was relevant for people in the UK. Although he thought the NHS webpages were helpful, Devan said they were not targeted at young people. He felt there should have been more advice online for young people in the UK about where to go for support. Using the internet and social media for information
Most people had used the internet at some point to look for information about acne and treatments for acne. For example, people mentioned using:
• NHS website
• Google search
• Yahoo answers
• discussion forums
People used search engines like Google to type in their questions, or looked for specific articles and information about drugs and creams. Fatima had been given skincare products by a private clinic in another country and used Google to research what the products were for, how they worked on the skin and whether there were cheaper alternatives containing the same ingredients on the market. Chris used the internet to see if anything new had come up in terms of remedies or prevention. Eli and Deborah followed people on YouTube with acne who posted video tutorials and photos showing how to put on make-up to cover up acne. Most people used the internet to get information, but a few also used it to provide information to others. Devan set up a website about bullying to inform teachers and parents. People spoke about the good and bad aspects of using the internet. Internet forums and support groups
Many people looked at internet forum discussions, although only a few actually posted on them. Using internet forums to search for information could be useful but it could be hard to get a balanced view of people’s experiences. For example, forums where just a few people’s experience or views were given could be misleading. Also, although it was “useful” hearing others’ stories online, it could be difficult to tell how common their experiences were or what other factors (skin type, lifestyle) had affected them. Even Molly, who found forums useful in researching experiences of taking isotretinoin, said “sometimes it’s not quite as comprehensive as you’d like”. She thinks it would be better if you could ask for more information from people who posted about their experiences. Many people felt they didn’t need support groups or didn’t want to talk about their acne to strangers - Naomi felt strongly that she didn’t “want to talk to nameless faceless people on the Internet” about it. But a few thought support groups were a good idea, even though they had not looked for one, and some had found support that suited them. Devan volunteered for an anti-bullying organisation and says that if he felt “low”, he would speak to counsellors on their website. Marga, who says her acne was linked with her “bouts of” depression, went on a “stressless” course and was waiting to go on a mindfulness course. Other support
GPs and dermatologists could be an important source of practical and emotional support. A few people found it helpful when their dermatologist shared their own experiences of having acne and using certain treatments. For example, Rachael was taking isotretinoin while doing her A-levels and found it “quite encouraging” to know that her dermatologist had taken the treatment when he had exams too. But when Molly went to see her doctor about her acne, the doctor said “if you hadn’t mentioned it then I would have” which made her feel “horrible”. Many felt it was important for doctors to be understanding about how acne was affecting their life.
Friends and family were often a very important source of support, even for those who were older or self-reliant. Molly said her parents gave her “active” support when she was younger like attending doctors’ appointments with her, but now she is older they play a more “passive role”.