Access provided by
London Metropolitan University
• To better understand how young people use the internet and social media to source health information
• To read about particular areas of misinformation about eczema on the internet and social media
• To develop strategies for countering online misinformation about skin conditions
The traditional patient-clinician relationship is changing as young people and their families often now turn to the internet and social media for health information, treatment advice and support. Much of that content, however, is unregulated, unverified and inaccurate, which leads to the dissemination of health misinformation. Healthcare professionals working with young people with eczema and their families need to understand why young people turn to social media for health information, identify trends in online misinformation about eczema, and provide alternative, trustworthy sources of information. This article discusses particular areas of online misinformation about eczema as well as dermatology content on specific social media platforms. It also reports the views of young people on the youth panel of the charity Eczema Outreach Support about different social media platforms.
Nursing Children and Young People. doi: 10.7748/ncyp.2024.e1517
Peer reviewThis article has been subject to open peer review and checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Lawton S, Runcie C, Murdoch C (2024) Understanding and supporting young people exposed to online misinformation about eczema. Nursing Children and Young People. doi: 10.7748/ncyp.2024.e1517
Published online: 05 August 2024
Eczema – also called atopic eczema or atopic dermatitis – is a common inflammatory skin condition characterised by dry and itchy skin that can affect 15-30% of children and 2-10% of adults (Thandi et al 2021) (Figures 1 and 2). In some children, eczema resolves (National Institute of Health and Care Excellence (NICE) 2023a), but in others it continues during adolescence and into adulthood (Margolis et al 2014). Adolescence is a critical time in a young person’s development, a period during which they need to acquire self-management skills, self-confidence and independence (De Vere Hunt et al 2020). Nurses can help young people with eczema to develop their independence and ability to self-manage by providing them with timely and appropriate support and information about their condition and treatment options.
The traditional patient-clinician relationship is changing, with young people and their families now often turning to the internet and social media for medical information and advice. Social media platforms are commonly used to source health information, guidance and support, but many are unregulated and the accuracy, relevance and impartiality of their content is rarely verified (Guzman et al 2020). They appear to be widely used by professional and patient organisations as well as by individuals, but many spread and promote inaccurate, biased or dangerous information (Szeto et al 2021).
Eczema Outreach Support (eos.org.uk) is a charity providing practical and emotional support to children and young people with eczema and their families across the UK. This article, written by three members of Eczema Outreach Support, discusses particular areas of online misinformation about eczema, dermatology content on specific social media platforms, and what nurses can do to support young people with eczema so that they can protect themselves from online misinformation about their condition and its treatment. The article also summarises the views of young people who are members of the charity’s youth panel (https://eos.org.uk/youth-panel) and were asked to explain, for this article, how useful they find specific social media platforms.
Health information that is freely available online has potential benefits but also comes with risks (Gantenbein et al 2020). Increasingly, young people obtain health information from short videos on social media platforms rather than from traditional sources, but the accuracy of that information is inconsistent (Klein et al 2023). There is a vast amount of online information on skin conditions that is not evidence based, does not follow professional guidelines and can be inaccurate, biased and dangerous. This misinformation can feed trends such as the use of anti-ageing creams by children (Marsh 2024) or of luxury skin care products by teenagers (British Skin Foundation 2024).
Health misinformation can negatively affect young people’s relationships not only with healthcare professionals but also with family and peers, who may not condone the young person’s use of the internet and social media for sourcing health information. Additionally, a lack of health literacy can make it challenging for young people to assess the reliability of online health information, which creates a threat to public health (Klein et al 2023). The health information environment young people find themselves in makes them vulnerable to erroneous health beliefs (Nan et al 2022).
• Young people increasingly turn to the internet and social media for medical information and advice
• Eczema is a complex condition with a multifactorial aetiology, which makes it susceptible to misinformation
• Information about eczema found online includes unsupported or false claims about its causes and treatment
• The accuracy of dermatology-related content on social media platforms varies greatly and may be false or misleading
• Strategies for countering online misinformation about skin conditions include monitoring young people’s social media use, understanding their psychological drivers, making them aware of the risks and developing effective responses
Although eczema is extremely common, it is a complex condition with a multifactorial aetiology, which makes it susceptible to misinformation. In a review article about online misinformation about eczema, O’Connor and Murphy (2021) highlighted particular areas of misinformation. The information they found online often suggested that eczema is caused by minor issues and that it is reversable if exposure to triggers – for example, certain foods, chemicals, dust, emollients or vaccines – is avoided. However, many of the substances cited as potential triggers do not cause eczema. Furthermore, the information often failed to consider that the aetiology of eczema is multifaceted and that avoiding exposure to potential triggers is unlikely to be helpful on its own.
Table 1 lists examples of online misinformation about eczema noted by O’Connor and Murphy (2021).
| Topic | Misinformation | What the evidence says |
|---|---|---|
| Diet | Excluding certain foods from one’s diet – for example, dairy products, eggs, nuts, fish or gluten – is incorrectly recommended for ‘curing’ eczema, with vegan diets described as ‘curing’ eczema within days | Food allergy is implicated in atopic eczema in about 7% of cases, mainly among children under the age of three years. Food allergy should be considered as a possible cause of eczema in this age group in the following situations (Primary Care Dermatology Society 2021):
|
| It is suggested that normal foods can increase intestinal permeability (‘leaky gut syndrome’) and cause eczema, and fad diets are recommended to avoid this | This suggestion is false (O’Connor and Murphy 2021) | |
| Chemicals | Chemicals are cited as potentially causing eczema. Foods and cleaning products containing formaldehyde are said to cause eczema. The rising prevalence of eczema is said to be secondary to an increased use of washing detergents | There is no evidence to support these claims (O’Connor and Murphy 2021) |
| Dust | Dust is cited as a potential cause of eczema by companies that promote the use of air purifiers as a preventive measure and/or a cure for eczema | House dust mite allergy can trigger flares of eczema and respiratory symptoms, but there is no evidence that dust can cause eczema (O’Connor and Murphy 2021) |
| Emollients | Several websites claim that topical treatments including emollients can cause eczema | There is no evidence to support these claims (O’Connor and Murphy 2021) |
| Vaccines | There are claims that vaccines contain ingredients that can trigger an immune response and cause eczema in genetically susceptible individuals. One company regularly claims that ‘poisonous’ vaccines cause eczema | These claims are false and undermine vaccination programmes. Eczema often starts in the first months of life, which is also when the first childhood vaccines are administered, and existing eczema often flares up a few days after an immunisation. This can lead to the incorrect assumption that vaccines can cause eczema. There is no evidence suggesting a causal link between immunisation and eczema (Addison 2023) |
| Technology | Eczema is attributed, albeit infrequently, to 5G wireless technology | There is no evidence to support this claim (O’Connor and Murphy 2021) |
| Topical corticosteroids | A medical professional overseas recommends a treatment preparation combining a topical corticosteroid cream, an emollient and the antibiotic fusidic acid |
|
| Natural remedies | Natural remedies such as witch hazel, calendula and apple cider vinegar are frequently recommended to treat eczema | There is no evidence to support the use of such remedies to treat eczema (O’Connor and Murphy 2021) |
| Herbal products are available from a variety of online sources and are targeted at people who have concerns about the long-term use of topical corticosteroids | A large number of these products appear to contain high-potency topical corticosteroids – see for example British Association of Dermatologists (2015) – and their use therefore puts people at an increased risk of the side effects they are anxious to avoid |
(Adapted from O’Connor and Murphy 2021)
In their review article, O’Connor and Murphy (2021) also noted that topical corticosteroid withdrawal – also referred to as ‘topical steroid withdrawal syndrome’, ‘red skin syndrome’ or ‘topical steroid addiction’ – is widely discussed on eczema forums and social media platforms. Awareness of topical corticosteroid withdrawal has increased, partly because people are sharing their experiences online. However, the condition is not well defined, not well understood and under-researched, as explained by the British Association of Dermatologists (BAD), the British Dermatological Nursing Group and the National Eczema Society in their joint statement on topical corticosteroid withdrawal (BAD 2024). According to these organisations, there is an urgent need for high-quality research into topical corticosteroid withdrawal and it is important that healthcare professionals in their discussions with patients (BAD 2024):
• Emphasise that topical corticosteroids can be a safe and effective treatment for eczema.
• Explain how to use topical corticosteroids as safely as possible.
• Try to find common ground with patients who have concerns about the use of topical corticosteroids.
• Explain that concerns about topical corticosteroid withdrawal should not put patients off using topical corticosteroids when these can help, and that when they do not help, alternative treatments are available.
• Be supportive of patients who experience topical corticosteroid withdrawal reactions.
• Offer alternative treatments to topical corticosteroids to patients who would otherwise stop using them.
O’Connor and Murphy (2021) highlighted challenges faced by patients, families and healthcare professionals due to online misinformation about eczema. Others have explored dermatology content more broadly but on specific social media platforms, including on TikTok, Instagram, YouTube, Facebook, X (previously Twitter) and Snapchat. The following paragraphs provide brief summaries of these other studies, illustrated by findings and direct quotes from members of the Eczema Outreach Support youth panel, whose views were sought for this article.
TikTok is one of the fastest-growing social media platforms. It allows anyone with an account to create videos of up to ten minutes (Mak 2020). Users (‘creators’) can generate video content on the platform and directly respond to videos, questions and comments posted by others. TikTok uses an artificial intelligence algorithm that provides a personalised feed called the ‘For You’ page (Devjani et al 2023).
A study of 544 TikTok videos about the top ten dermatology diagnoses and procedures found that 45% of the videos had been created by individuals, 39% by healthcare professionals, 8% by vloggers,7% by business and industry and 1% by charities (Nguyen et al 2021). The content was essentially educational and largely discussed skin care, which confirms that TikTok is used for sharing health information. The videos mainly featured conventional treatments for eczema; a minority featured non-conventional treatments such as banana peel masks, vinegar paste and gua sha massage; and some featured dangerous treatments, such as at-home microneedling and hyaluronic acid injection (Nguyen et al 2021). The large number of videos created by individuals suggests that TikTok is popular with people who want to share their experiences of living with a skin condition. While TikTok provided access to some content from professional sources, with potential benefits for young people with eczema, a large amount of the content had been created by lay people, highlighting potential risks (Nguyen et al 2021, Villa-Ruiz et al 2021).
It is worth noting that the algorithm that creates the ‘For You’ page favours a ‘shock factor’ in the promotion of content, since more controversial content is likely to attract more comments and prompt more interactions than less controversial content (Klug et al 2021). This means that unconventional treatments are sometimes promoted over medically reliable information.
Young people on the youth panel valued the peer-to-peer information sharing which TikTok affords but were aware of its limitations. One member of the youth panel said:
‘TikTok allows me to search for the kind of information which is hard to ask doctors and nurses, which can help me deal with the day-to-day reality of living with eczema. However, sometimes when your algorithm “knows” you have eczema, it can send you into a rabbit hole of outlandish “cures” which can be hard to escape.’
On Instagram, users can share photographs, stories (visible for 24 hours to followers of the user’s account) and videos (‘reels’) of up to 90 seconds with creative audio and visual effects. Instagram enables users to interact with other users through direct messaging and comments about posts. As is the case with other social media platforms, many influencers who post about skin conditions on Instagram are not dermatology professionals, there is a lack of educational content, and content can be inaccurate, misleading and detrimental (Szeto et al 2021).
Young people on the youth panel said they often use Instagram to share honest insights into their lives and to look for people with similar lived experience. This can create a sense of community and provide relief from the social isolation often associated with skin conditions. One member of the youth panel said:
‘You can follow the story of specific people on Instagram and seeing their experiences reminds me that you can have a life outside of having a skin condition.’
However, this can also create an atmosphere of competition based on the comparative severity of one’s condition. Young people on the youth panel described feeling vulnerable to pressure to share more about themselves than their peers to ‘keep up’.
YouTube is a video-sharing platform and the second most accessed website worldwide. Users can upload videos but also livestream, vote on and comment on content, as well as subscribe to content creators’ YouTube channels (Szeto et al 2021). It is a popular social media platform that hosts an increasing number of videos containing health information and originating from various sources, including medical professionals, pharmaceutical companies and individuals (Guzman et al 2020).
Young people on the youth panel thought that YouTube creates a convenient way for large numbers of people to obtain reliable information from healthcare professionals. However, as with other social media platforms, the accuracy of dermatology-related content in YouTube videos varies greatly, with many containing false or misleading information. Furthermore, it is easy for people to disguise promotional content as medical advice due to the lack of regulation and verification of people’s credentials (Szeto et al 2021).
In an update and analysis of trends about dermatology content on YouTube, St Claire et al (2018) found that, of 240 dermatology videos, 35% contained educational content, 42% had been uploaded by – or featured – a medical professional and 28% had involved a dermatologist. Compared with the outcomes of a similar analysis conducted four years previously, St Claire et al (2018) found that educational and personal content had increased while advocacy and advertising content had decreased.
Conversely, in a study assessing the quality of YouTube content about topical treatments for psoriasis, Pithadia et al (2020) found that out of 199 videos just 10% featured a healthcare professional and only 28% discussed treatments recommended by the American Academy of Dermatology versus 55% discussing natural treatments. Furthermore, videos featuring patient testimonials triggered the most views and user interactions, whereas videos featuring healthcare professionals had the lowest views and user interactions. Videos criticising medically prescribed treatments and consultations with healthcare professionals had significantly more views than videos encouraging viewers to seek medical advice (Pithadia et al 2020).
Facebook is commonly used by people to learn about their condition and find support from disease-specific Facebook groups. These groups are not usually run by medical professionals. Facebook groups, like traditional face-to-face peer support groups, can serve as supportive communities where people can share their experiences, provide support to each other and offer or receive advice, even though this advice may be unsubstantiated by research (Szeto et al 2021). It is important that these groups are moderated safely and have clear ground rules for those joining.
Young people on the youth panel explained that they use Facebook groups mainly to experience a sense of community and solidarity rather than for obtaining medical advice. They felt that Facebook groups provide a useful forum allowing users to share their experiences. However, they also understood that these groups do not necessarily provide objective and trustworthy information. Members of the youth panel said:
‘Facebook groups for specific medical issues can be great places to speak with people going through the same thing [to help you] feel less alone.’
‘[Facebook groups] are full of people’s opinions and therefore aren’t always 100% reliable.’
X (previously Twitter) provides a quick and easy forum for sharing information, fostering connections with others and developing professional relationships. Discussions on X cover a variety of dermatology topics, including users’ experiences, and many professional and patient organisations use the platform, thereby providing a sound knowledge base and source of support for people with a skin condition. It can, however, spread misinformation, especially about inaccurate and ineffective treatments, since there is a lack of monitoring and no verification of the accuracy of users’ posts (‘tweets’) (Szeto et al 2021).
Young people on the youth panel mainly perceived X as a vehicle to find experts, with one member of the youth panel saying:
‘X is more about finding people in the field than for asking questions and getting answers from people.’
Snapchat allows users to share clips of pictures and videos lasting up to ten seconds (‘snaps’). It features instant messaging, video chats, ‘charms’ (which are virtual awards designed to increase engagement and activity and were previously known as ‘trophies’) and user-created avatars. Snaps are short lived by nature since they disappear from the platform once they have been opened and viewed. Snapchat also differs from other social media platforms in that it offers various possibilities of using filters to visually modify content before posting it, thereby allowing users to alter their physical appearance. This is a concern from a dermatology perspective, since skin conditions often negatively affect people’s physical appearance, body image and perception of self (Szeto et al 2021).
From the perspective of young people on the youth panel, Snapchat is less of a ‘big player’ in the skincare community. Although there is an ‘Explore’ page which functions in a similar way to TikTok and Instagram, this is a much smaller part of the platform. Members of the youth panel felt that there is a much lower presence of skincare ‘influencers’ on Snapchat than on TikTok, Instagram or YouTube.
The role of nurses includes providing young people who have eczema with timely and appropriate support, information and guidance about their condition and treatment options, and raising young people’s awareness of the risks of online misinformation, with the aim of ensuring that they remain well informed and safe.
When working with young people with eczema, it is useful to try to understand what they are looking for when searching for health information online, why they may be susceptible to believing information from untrustworthy sources, and why they may be tempted to share misinformation with others. On social media platforms, sharing is often dictated by what will capture other users’ attention and people often use emotive language to provoke a reaction (Ecker et al 2022). Nurses need to avoid being judgemental and consider the underlying factors that can make young people more susceptible to believing and acting on misinformation (Chou et al 2018).
Chou et al (2018) and Ouyang et al (2022) proposed strategies for countering misinformation about skin conditions on social media. Table 2 merges and summarises their respective advice, thereby providing a practical tool for nurses who work with young people with skin conditions.
When working with young people with eczema, it is also useful to identify the trends in online misinformation about eczema, anticipate what young people may have read or seen, and have suitable alternative sources of information ready to share with them. Professional and patient organisations are reliable sources of online information about eczema (Box 1). Social media platforms and websites other than those run by professional and patient organisations can contain sound information, but young people will often need to be directed to trustworthy sources of information and/or taught how to discriminate between trustworthy and untrustworthy content.
• British Association of Dermatologists: www.bad.org.uk/pils/atopic-eczema
• Primary Care Dermatology Society: www.pcds.org.uk/clinical-guidance/atopic-eczema
• National Eczema Society: eczema.org
• Eczema Care Online: www.eczemacareonline.org.uk
• Eczema Outreach Support: eos.org.uk
Young people increasingly turn to the internet and social media for health information, advice and support. Studies have shown that there is online misinformation about eczema, notably about its causes and treatment. Social media platforms can enable young people with eczema to share their experiences and feel a sense of community. Some websites and social media platforms provide sound information put together by professional and patient organisations. However, online health information can also be incorrect, misleading and biased, and the accuracy of dermatology-related content on social media platforms varies greatly.
Promotional content is easily disguised as medical advice due to a lack of regulation and verification of users’ credentials. To support young people with eczema, nurses need to explore their motivations for searching for health information online, direct them to trustworthy sources of information, and help them navigate the internet and social media so that they can protect themselves from misinformation.
05 September 2024 / Vol 36 issue 5
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