Atrial fibrillation
Sources of information and support for people with atrial fibrillation
With more and more people using the internet, getting information about atrial fibrillation (AF) has never been easier. But the internet is not the only way to find out about AF.
Here we look at some of the sources of information and support which people with AF use to help them better understand their condition.
The internet as a source of information
For those people diagnosed with AF before the internet age, finding information about AF was difficult.
Diagnosed over 30 years ago, Elisabeth X recalled how hard it was to get information about AF. She talked about the books her GP suggested she read.
Diagnosed over 30 years ago, Elisabeth X recalled how hard it was to get information about AF. She talked about the books her GP suggested she read.
And also sitting on my bed and explaining that we all had to die of something and it was likelihood it would either be cancer, a stroke or a heart something and really, if you added these three up maybe a heart thing was, [laughs]. It wasn’t exactly reassuring but I think he meant to be reassuring.
I mean the things that he brought me were these massive great text books [laughs] that nobody in their right mind would want to read.
For most people, however, the internet has now become a key resource for finding out about AF. As Chris Y said, the internet has taken over and ‘encyclopedias and things tend to be a bit old fashioned now’.
People we spoke to praised websites run by NHS Choices, the Atrial Fibrillation Association (AFA) and the British Heart Foundation (BHF). However, they stressed the importance of being selective when searching on the internet, noting that websites could have conflicting information.
While Carin trusted American websites to have ‘all the latest’ information, Eileen avoided these sites if possible, describing them as ‘very drastic and scary’.
Chris Y stressed the importance of comparing information found on other websites as they could sometimes have conflicting information.
Chris Y stressed the importance of comparing information found on other websites as they could sometimes have conflicting information.
David Y is selective about which websites he uses. He chooses recognised sites which ‘know their subject matter’ and have patient interests at heart.
David Y is selective about which websites he uses. He chooses recognised sites which ‘know their subject matter’ and have patient interests at heart.
After searching on an American website, Geoff was convinced he had ‘vagal atrial fibrillation’. His doctors in the UK did not recognise it.
After searching on an American website, Geoff was convinced he had ‘vagal atrial fibrillation’. His doctors in the UK did not recognise it.
People varied in the types and quantity of information they wanted. Some talked about how they focused on the specifics of their condition rather than going into detail. As Jeni said, ‘you can panic yourself and start thinking it’s worse than it is. I don’t want to overload my brain and wake up worrying at 3am’.
Ginny admitted that she was not interested in hospital performance figures, which could be ‘skewed by various things’, but wanted to know ‘about the guy who was going to do the catheter ablation’.
Mary spoke of browsing the internet, but declared that she didn’t have time to dwell on her health. Others, like Nuala, however, used the internet more extensively, contacting health professionals throughout the UK for more information ‘if I had good names from the internet’.
While Eileen wanted to find out more about the mechanics of AF, she was less interested in going online to find out about lifestyle changes.
While Eileen wanted to find out more about the mechanics of AF, she was less interested in going online to find out about lifestyle changes.
Some participants felt it was important to look up information and become a knowledgeable and informed patient, and to be able to hold a ‘meaningful conversation’ with a consultant.
Jenny admitted that she had spent ‘all day every day’ researching on the internet after her husband had an AF-related stroke. She said that she found the Atrial Fibrillation Association website helpful, providing information on treatments, specialists and ‘the questions I should be asking’.
Martin felt it was important for people to learn about AF on the internet so that they could hold ‘meaningful conversations’ with their consultants.
Martin felt it was important for people to learn about AF on the internet so that they could hold ‘meaningful conversations’ with their consultants.
Other sources of information
Not everyone we spoke to used the internet. As Elisabeth X said, ‘I’ve never knowingly seen a website’. Geoff felt he may have benefitted from looking up information online sooner, but was somewhat dubious of its reliability.
Raymond, in his seventies and just starting to learn how to use the internet, wondered what use more information about his condition would be at his age. Dot was happy to leave her treatment up to her doctors, describing herself as ‘not one of these people that goes on the internet and checks everything’.
Talking to health professionals, either in person or by phone, helped people get answers to questions about their AF and treatment options.
Ginny ‘drove her cardiologist quite mad with questions’ and Jeni praised her arrhythmia nurse who she could ‘just ring up anytime’.
Gail prefers to speak to her cardiologist, rather than searching for information on the internet.
Gail prefers to speak to her cardiologist, rather than searching for information on the internet.
As a doctor, Dr Tim Holt needs to keep up to date with the latest developments in AF so that he can help his patients.
As a doctor, Dr Tim Holt needs to keep up to date with the latest developments in AF so that he can help his patients.
Textbooks, medical journals, and factsheets provided by health professionals and support groups also helped people understand AF.
Some people borrowed textbooks from the library or read articles in recognised journals such as The Lancet to research their condition.
When she was put on the list for an ablation, Jeni was sent ‘a really informative pack’ in which the nurse had highlighted relevant information.
Ginny, who needed to know the ‘far end of everything’, was given an information pack from the hospital detailing the ‘ins and outs of everything and the risks associated with it’.
Before her pre-operation appointment for an ablation, Ginny prepared herself by reading booklets from the hospital and the Atrial Fibrillation Association.
Before her pre-operation appointment for an ablation, Ginny prepared herself by reading booklets from the hospital and the Atrial Fibrillation Association.
Support groups
Support groups, such as those organised by the Atrial Fibrillation Association (AFA) and the British Heart Foundation (BHF), offered a lifeline for some people with atrial fibrillation (AF).
People spoke of the usefulness of leaflets, factsheets, question and answer sections, and booklets available from support groups either by mail or by downloading from the internet. Phone contact provided reassurance and advice.
Eileen praised the leaflets available through the Atrial Fibrillation Association because ‘they’re printed in a language that everybody can understand’.
Bob found learning about AF from literature available through the Atrial Fibrillation Association helped him communicate with his doctors.
Bob found learning about AF from literature available through the Atrial Fibrillation Association helped him communicate with his doctors.
Janet explained how the British Heart Foundation had helped her with advice and information through their Heart Matters programme.
Janet explained how the British Heart Foundation had helped her with advice and information through their Heart Matters programme.
I asked about the warfarin and the cardioversion and expressed some of my concerns and about my other medical problem. And I did feel very reassured that yes, it could work very well for me but also that nobody was going to really push me into having this if it wasn’t something, it was my choice and I felt reassured about that.
I’m always aware that through Heart Matters that they’ve got excellent little booklets and I had I had them on angina. We had them for my husband’s heart problems. So, you know, I’ve and I’ve got a little pack and I pass those around with friends because I just think they’re brilliant. They explain the medicines for the heart and things like that. So I, you know, I know that that information is there if I want to get it.
Online forums, conferences, and local support groups offered an opportunity to meet others, share experiences and learn more about AF. A number of people had found conferences, such as those organised by the Atrial Fibrillation Association (AFA), a useful source of information and an opportunity to speak to others about their experience of AF.
Anne described the AFA conferences as ‘brilliant’. She said she ‘learnt more from those than I have from any of the doctors’.
David X heard about the new anticoagulant medications at ‘symposia for the medical profession’ to which he was invited and ‘patient orientated sessions’ at AFA conferences (for more see ‘Alternatives to warfarin for atrial fibrillation: the new anticoagulants’).
Bob is an active member of a forum set up by the Atrial Fibrillation Association, advising people newly diagnosed with AF. The forum has been a source of mutual support and friendship.
Bob is an active member of a forum set up by the Atrial Fibrillation Association, advising people newly diagnosed with AF. The forum has been a source of mutual support and friendship.
When I started on the forum we were up to I think five hundred posts, or something like that, four hundred and eighty, five hundred posts. We’re now into the ten thousand something or other, and I think we’ve probably got, I don’t know how many members we’ve got at the moment. There’s a there’s a hard core of about a dozen of us that look on there most days and every week there’s somebody new coming on saying, “I’ve just been diagnosed. I’m terrified. What’s going to happen? Can somebody help?” And it is important, I’ve I consider it important to me to look on there every day, sometimes two or three times a day, because having been there I know what they feel like, and I don’t want them to feel like that. So if I can go on and say, “Yeah, okay. This is the situation. I have greatest sympathy for you. I’ve been there. I do know where you’re coming from, but try and relax.” And signpost them, look on the forum. Look on the main website, and there is a fact sheet on anti-coagulation. There is a fact sheet on ablation. There’s a fact sheet on drugs. There’s so much information there now that wasn’t available when I was first started out on the journey, and it’s not all technical. It’s not all there’s a there’s a certain amount of banter and innuendo between some of us old stagers that are on there, there’s a sort of hard core. A lot of them I’ve met at conferences and we’re quite good friends and occasionally, there’s one lady if we’re up in London for a meeting or something, we’ll have dinner in the evening before we go our separate ways. We all, there’s a there’s a group of us known as the pink carnation gang who meet up at the conferences and wear a pink carnation to be recognised, and always try and sit together and so on and so forth and it’s nice. It’s a sort of mutual supporting group. We care about each other, which is important.
For Geoff, chatting to people about their experiences at Atrial Fibrillation Association meetings was more useful than searching the internet.
For Geoff, chatting to people about their experiences at Atrial Fibrillation Association meetings was more useful than searching the internet.
Eileen keeps up-to-date with new treatments at annual Atrial Fibrillation Association conferences. Local groups offer a chance to meet other people.
Eileen keeps up-to-date with new treatments at annual Atrial Fibrillation Association conferences. Local groups offer a chance to meet other people.
So they do that. They also have various groups or, you know, people set up groups, local groups. I haven’t actually got into one. I keep trying to so, of us, I was going to say I suppose it’s a bit like Alcoholics Anonymous. It isn’t because they have they get, you know, arrhythmia nurses to come and talk and dieticians and it also gives you a chance to meet other people. That was the biggest thing with AF was the Atrial Fibrillation Association when I found it, was realising there were other people my age going through the same thing.
Not everyone had access to a local support group however. Although Nuala has attended meetings in the city, it was ‘too far away from home’ to go regularly.
Glyn was not aware of any support groups in his area. Carin felt she would benefit from being able to meet others with the condition if there was a local support group.
Vera would have been happy to ‘talk to other people’ about her experiences of AF if she had free time, but was not aware of the existence of any nearby groups.
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