Online and other digital sources of information and support

Google is a wonderful thing. It’s like having, you know the Encyclopaedia Britannica on speed in your pocket, because you can literally ask any question and find out an answer. So, I think all the knowledge is out there, and it’s not that difficult to access. But putting it into practice and being successful at it is another thing.’ Liz

The internet as a source of medical information and peer support has become increasingly popular as more patients go online. Websites, social media and specialist applications (‘apps’) provide a vast array of options for people to find information, monitor their health, share experiences and connect with others. Among the people we spoke to, going online was a popular way to access information and support about weight and health. For example, when Stuart was told he needed a triple heart bypass the first thing he did was to watch the operation online to find out what it was all about.

Liz finds it easy to access information about weight loss online but harder to put it into practice.

Age at interview 54

Gender Female

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And regarding information, is there any information you would like or where you have found your information from?

Well, I would say I’m relatively intelligent. Well no, averagely bright. And so, you know, most of these days you can find out anything you want to know, cant you? Everything’s…I mean Google is a wonderful thing. It’s like having, you know the Encyclopaedia Britannica on speed in your pocket, because you can literally ask any question and find out an answer. So, I think all the knowledge is out there, and it’s not that difficult to access. But putting it into practice and being successful at it is another thing.

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Lina likes to read up on her disabilities online and describes herself as pretty computer savvy. Her sister calls her Mrs Google.com.

Age at interview 49

Gender Female

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The thing about me is I’m very proactive in my disabilities. I read up on them. I join forums, I make it my, I make it so that when I go in to see a doctor or a consultant that we can talk about my illness and I’m not thinking, coming out thinking, What the hell’s he talking about?’ you know, and come out with less information than I did when I came in because I’ve, it’s so difficult to try and process a lot of things. So, if you’re, forearmed is forewarned, I say when you’ve got any type of illness find out as much as you can about it, you know, my sister calls me, Mrs Google.com’ [laughs].

[Laughs.]

You’ve been on Google again Yes, I have You know, it’s my friend [laughs] when I’m, I’m here on my own, me and my phone and I’m like, Let me just see what they’re saying. So yeah, so I love to make sure that I know what’s going on with my health, that I’m up to date and up to speed
I go to fibromyalgia.co.uk, Diabetes UK, chronic, the Royal Society of Neurology. I think that’s headaches and Arthritis.co.uk for my arthritis problems, they also do cover fibromyalgia because it is classed as a muscoskeletal disorder, so it does come under their, their reign of, they’ve got very good leaflets.

Okay.

So, I just picked one up at the hospital and I was like, Oh they’ve got a website. Oh, I’m going to go to that.

And you register?

Yeah, I register and I also register for newsletters, so any little, so I won’t miss out on any new thing that comes up
Okay.

.which is perfect for me because then I can be on top of it. It comes in my email. I go straight to it, open it up and then it gives me links to different places I need to go to if I want any more information, so yeah I’m pretty computer savvy now.

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Obtaining information online by visiting websites

While online information and support was easy to access, people mentioned a number of downsides. David felt ‘more comfortable with online assistance than with group assistance’ and had found NHS Choices a particularly useful website for information about weight loss and exercise. However, the downside for him was not having ‘somebody who could sit down and say, yes, well, this is what you need and this is, in your situation, this is what you should be doing’. June said she was good on the internet but found the NHS One You site ‘patchy and out of date and incomplete’. She felt that ‘there isn’t one place you could go to, either on the internet or in a booklet and get all the information that’s needed’.Participants also commented on the contradictory nature of some of the information they found online. Angela searched online for what to eat to lose weight; one website advised her to eat ‘the really filling stuff like avocado, fish and meat’ while another told her that ‘these sort of foods are banned’. The people we spoke with highlighted the need to judge the quality of different sources of information online, avoid information overload and avoid the temptation to self-diagnose. It was also important to be able to digest relevant information without becoming afraid.

Hilary describes the importance of going to trusted websites such as the Mayo clinic and Diabetes UK.

Age at interview 62

Gender Female

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But do you think that they have given you the information in, let’s say, plain English, in a way that you can absorb and is easy?

Yes, yeah, I think so and as I say, with the, the Internet sites as well, you, you begin to pick up very quickly, the NHS, Mayo clinic, as I said before, they’re very good with their information. Diabetes UK, all, there’s always something you can pick up proper information from. You do have to be careful you’re not going on to these sites that are going to frighten the living daylights out of you because they don’t know what they’re talking about. You need to go on a proper, you know, recommended site, I think.

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How to age well was a related issue for which people like Zaida, Heather, Sue X, June and Sue Y had sought online information. June did a free online course called, ‘Strategies for successful aging’ provided by a leading Irish university which she recommended to ‘everybody’ because it puts together in one place all the information about ‘why we should be slimmer, fitter, healthier to prepare ourselves for older age’ and the health consequences of doing otherwise. June also used her local council website to get information on what was available in her area. The problem was that it didn’t have a filter so ‘when you click on it, there’s seven hundred different organisations doing seven hundred different things, you know, from brownies to tea dances.’ She added, ‘Well who’s got time to wade through seven hundred things looking for the right thing for them?’

Joining online forums and support groups

The internet provides a space for many different forums and support groups, where people can go to find others experiencing the same conditions as them. The benefits of using the internet for support are that people can access it 24/7 and communicate at times that are convenient for them; distance and transport are no barrier to participation; and the anonymity of the internet can be an attraction for some people.

Some online support forums are run by charities; for example, the British Heart Foundation and Diabetes UK have support forums where people can exchange knowledge and experiences with others. Groups can also be found on social networking sites such as Facebook, where people self-organise into online communities for health support. Ellie said online forums were her main support: ‘You go onto the forums and you speak to other people who suffer with diabetes. They’re the only people that can help’. Lesley has joined lots of groups on social media to discuss health issues, including a group for people with ICDs (implantable cardioverter defibrillators) and another for women with heart failure. She said that there is a lot of talk about weight loss in those groups,

‘That’s not just heart-related that’s more listening to people, again, people following this sort of diet sort of things. I’ve just been dipping in and out of those sort of groups, but you know, a lot, there is a higher percentage of people certainly with women at my age who’ve had a heart problem or are on the drugs found it [weight loss] a struggle, you know.’

Linda and her husband used the Diabetes UK site; ‘We used it quite a lot. I used it quite a lot in the beginning of, when he was diagnosed because I wanted to find out as much as I could about it, even though I’ve treated people but it’s not quite the same as looking after, well not looking after but feeding somebody and being with them and I did use it quite a lot.’
Online participation can also be about influencing change, for instance, changes to food laws and regulations (see also ‘Environment and cultures impact on weight‘). Alan Y recalled signing a Change.org petition asking for changes in the food labelling system.

Ellie reads the information others post in an online forum for people with diabetes but does not offer advice because she thinks there are always people who are more knowledgeable than she.

Age at interview 69

Gender Female

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So you are part of this forums in which you exchange information with other people. Is that your main kind of support?

Yep.

Yep.

There’s an awful lot of people who come on it, just and usually quite young people saying that they’ve just been diagnosed, they’ve no idea what to do. Now, so that’s still happening and the people, I never give an opinion because I feel that my opinion might not be right and so I just, I read it and I take the information in, but I don’t give any out because there’s always other people who are more experienced than me who can tell them better things to do than I could.

I mean, I would say to anybody, Cut your carbs, start exercising End of. But that might not be right. It might work for me. It might not work for anybody else
Okay.

so I’m more a reader than a, I don’t given opinions.

Okay so you read other people’s post.

Yeah.

Okay rather than you.

I can have my own opinion, I’ll say, What an idiot or whatever or that’s good. But some of them come on are completely lost, especially the young ones, like the twenties, they haven’t got a clue and they feel very, very lost and they don’t know that you can sort of go to your doctor and demand this and demand that.

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Myra finds the special interest Facebook support groups, including one for people with hip replacements, helpful in general, but not for diet and weight issues.

Age at interview 65

Gender Female

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Yeah, well certainly medical stuff I do. I mean people laugh and talk about, Dr Google,’ don’t they, but I think it’s quite helpful. I do, I do, yeah.

Which type of websites?

One thing that I found really helpful which not, about, about medical things and probably weight as well is some of the Facebook support groups.

Ah, okay.

There’s one I found for people who’ve had hip replacements which I found really helpful because it gave you all sorts of useful information before you go in for it, the sort of stuff you’d need when you come home.

And also with the adrenal tumours, it’s so rare that the changes of finding anybody else and meeting anybody else who’d had it is almost nil. But on, on Facebook you find people who have the same issues as you, and yeah, I haven’t particularly used it for diet but for health issues, yeah.

Okay and you sort of kind of chat, do you?

Well people put, you know, often put something on and people come back and say, Oh yes I’ve had that problem and yeah.

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In addition to groups run by charitable bodies and individuals, some commercial weight management programmes also have an online presence and offer their members online discussion/bulletin boards, blogs and chat rooms. These may have their own dedicated site or may be hosted on social media sites such as Facebook.

Liz is in several Facebook groups, which she finds provide some light relief.

Age at interview 54

Gender Female

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Well, I am sort of… I am on Facebook on a couple of groups there that are allied to Slimming World. One is a sort of a Slimming World site which is called a Pinch of Nom, which is a quite a… you know quite nice, quite supportive, and I do…oh, how do I love seeing the before and after pictures of people who were fat to now theyre thin, and I’m thinking, Well done, I hate you. And then there’s another one which is a slightly more subversive group, which…I think it’s called Two Chubby Cubs, and they kind of do the Slimming World thing. And they put some really good recipes on and, you know which I like because…ooh Ill take a screenshot of that; Ill do that for tea tonight, that kind of thing, so I do quite like the online stuff, and they are a bit more subversive. Theyre much more sweary and stuff, which I quite like because at least that makes you laugh, you know when people are having a rant; you can have a little giggle at that. So, it’s not quite so self-righteous and self…full of self-praise, it’s a bit more subversive. So, I do have a couple of groups online that I look at yeh.

OK. And how do you feel after you have…especially the one that you canthe one that are more kind of fun.

Yeh [laughs], a bit more subversive. Yeh, I mean yeh, I do, I… you know, at least you’re getting… at least you can have a smile with some of those. You know, you read some people’s…because a lot of people will use it as like a blogging site. So, they’ll put like a little… like a diary entry on there about what they’ve done or how they feel, and it can be very funny, very entertaining. And at least you do get some people out there who say, "Well, look you know, I’m trying really hard and nothing’s happening," and I think, Yeh, you and me both.

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Using apps

Many health- and fitness-related smartphone apps can be used to support healthy eating and weight management. These can include features such as recipes, calorie counters, barcode scanners, weight progress charts, exercise tracking, BMI calculators, and educational information. These kinds of apps are designed to improve motivation, help with meal and exercise planning, and keep users focused on their goals. The people we spoke to who had used apps for support liked them because they were a convenient way of counting calories and helped them keep a record of weight.

Heather found apps particularly useful when she was starting out with calorie counting.

Age at interview 63

Gender Female

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So, but you have used the applications to help you?

Yes. That was particularly useful when I started out, when I had no idea and it was very useful because it gave you grams or it gave you numbers of. So you could weigh things and know you had exactly what, what the calories were and I adapted recipes that I’d previously used to, so I would, sometimes we’ll have what I call, chicken and mushrooms and tarragon,’ and I could, I would know that if I had two bits of chicken that was so many calories. But I could have lots more mushrooms and onions because they weren’t so many calories and you can still feel satisfied especially if you just have a little bit of the chicken.

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For Shirley, using an app was quick and convenient for calorie counting.

Age at interview 56

Gender Female

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Do you use any applications on your mobile to check things or to do with diet or..?

No, I tend to use their online app so every day I fill in my food to tell me what, what I’ve had, and you can, it does meals now so that’s better. So you can just put a whole Slimming World meal in. You haven’t got to sit and work it. it’s got, the one thing I’ve learned it’s got to be something quick. I’m no good at counting calories and weighing stuff too much because that’s too much time. I haven’t got the time to do that. So I’m better off, I know I can pick up that. I can have that potato, that’s fine and just sort of keep it like that. So, yeah, I do use that one online but not anything on my phone.

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Not everyone found apps useful; Angela tried downloading apps but found they weren’t practical: ‘before you know it, you’ve gone over something and then you’re scouting around for food with this much protein and no carbs and whatever, and it just, it messes with your head.’

Other sources of information and support

Apart from online support, people continued to turn to more traditional sources of information and support such as books, magazines and television programmes. Meeka didn’t source her information online; she found it easier to subscribe to the British Heart Foundation magazine and relied on books for nutritional information and recipes.

Once a week, before going to work, Jane listens to a radio health programme from Mauritius. In the UK her main source of information is Diabetes UK magazine.

Age at interview 42

Gender Female

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I think Diabetes UK because I have a newsletter and I kind of, like, sometime read, or I would probably read online. But I haven’t found nothing else.

Something else I do is like because in [country] like, on like, every like, every Wednesday they have half an hour.

So what
So, I’m just like on a Wednesday they have the on the radio in Mauritius, every Wednesday they have half an hour. So that’s what I mean before going to work then I make sure I listen to this and they talk about diabetes and, you know, what, what, you know, what exercise maybe you should be doing and what is important to eat. Like talking about psychological side of it, how you have to be healthy, your well-being, so like today they talking about psychological and last week they talk about I mean the heart. You know, so, I have been listening to this one I would say on the radio.

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