Sources of information and support about acne

People spoke about getting information and support about acne through many different sources including leaflets, the internet, social media, speaking to friends and family and speaking to their GP or dermatologist. Getting information or support could be something people did regularly or occasionally.

Molly compares different sources of information. She finds internet forums most useful.

Age at interview 20

Gender Female

Age at diagnosis 11

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A lot of people who had friends with acne talked about sharing information on treatments and causes. But some didn’t have friends with acne or didn’t feel comfortable talking to others about it.

Fatima and her friends all shared information about squeezing acne spots.

Age at interview 21

Gender Female

Age at diagnosis 12

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Will found it useful talking to friends about different treatments.

Age at interview 21

Gender Male

Age at diagnosis 14

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Because acne was common during the early teenage years, a few people felt strongly that more information about acne was needed at school.

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.

Alexandra found it most helpful seeing pictures of other people’s back acne so she could compare it to her own acne.

Age at interview 22

Gender Female

Age at diagnosis 13

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Shu En looked online about acne causes. She found the medical diagrams helpful, but didn’t like seeing photographs of other people’s skin.

Age at interview 19

Gender Female

Age at diagnosis 9

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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.

For Rachael, it was hard to get a clear idea of the balance of views about people’s experiences of isotretinoin.

Age at interview 18

Gender Female

Age at diagnosis 16

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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.

While there is a lot of information about acne for teenage skin, Deborah thinks there is not enough about acne for adult skin.

Age at interview 25

Gender Female

Age at diagnosis 12

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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
  • Youtube
  • discussion forums
  • Facebook
  • Instagram
  • blogs

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.

Harriet used the internet a lot and became a self-confessed skin expert.

Age at interview 21

Gender Female

Age at diagnosis 12

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Abbie found lots of interesting blogs and videos online about covering up acne and treating it.

Age at interview 17

Gender Female

Age at diagnosis 13

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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.

For Sarah, some sources of information on the internet are more reliable and helpful than others. Looking at forums could make her feel worse.

Age at interview 22

Gender Female

Age at diagnosis 16

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Rachael talks about how she used the internet to search for information. She found horror stories about taking isotretinoin.

Age at interview 18

Gender Female

Age at diagnosis 16

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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.

Harriet read comments people had made on Boots reviews sections and Yahoo answers. She felt some forums only gave a small fragment of a bigger picture.

Age at interview 21

Gender Female

Age at diagnosis 12

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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.

Emma did browse online support groups and thinks it would have been good to have had people to talk to in person.

Age at interview 20

Gender Female

Age at diagnosis 10

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For Ish, attending a support group would have been awkward.

Age at interview 22

Gender Male

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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’.

Hester explains how support from family and friends helped her.

Age at interview 21

Gender Female

Age at diagnosis 15

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Chris was quite independent and didn’t need support in going to the doctors from his parents, but he did appreciate support from his mother when he was considering taking isotretinoin.

Age at interview 20

Gender Male

Age at diagnosis 17

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One of Emma’s neighbours who was a beautician gave her advice about what products would help her skin and which ones to avoid, and gave her a skin care routine which she still uses.

Age at interview 20

Gender Female

Age at diagnosis 10

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