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 out 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.
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.
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.
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.
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 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.
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.” 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.
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.
Support groups for atrial fibrillation
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. 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.
Janet explained how the British Heart Foundation had helped her with advice and information through their Heart Matters programme.
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.
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.
Not everyone had access to a local support group, however. Although Nuala has attended meetings in the city, this is “too far away from home” to go regularly. Glyn is 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 be happy to “talk to other people” about her experiences of AF if she had free time, but was also not aware of the existence of any nearby groups.