Family Practice Advance Access originally published online on April 6, 2005
Family Practice 2005 22(4):435-441; doi:10.1093/fampra/cmi024
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Many people with epilepsy want to know more: a qualitative study
DIPEx, Department of Primary Health Care, University of Oxford, Old Road Campus, Oxford OX3 7LF, UK
Correspondence to Alison Chapple; Email: Alison.chapple{at}dphpc.ox.ac.uk
Received 28 October 2004; Accepted 30 December 2004.
Prinjha S, Chapple A, Herxheimer A and McPherson A. Many people with epilepsy want to know more: a qualitative study. Family Practice 2005; 22: 435–441.
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Abstract |
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Objective. To explore why, at the turn of the 21st century, many people with epilepsy still want more information.
Methods. Qualitative study with a maximum variation sample in the UK. We interviewed 38 men and women, 35 with epilepsy and three carers of people with epilepsy, recruited through GPs, neurologists, support groups and charities.
Results. People with epilepsy obtained information via health professionals, epilepsy organisations, leaflets, books, and the Internet. Many people wanted much more information about treatment options. People wanted to discuss the advantages and disadvantages of different drugs with their consultants, who were sometimes too busy. People also wanted to know more about the causes of epilepsy, partly because they feared the stigma associated with it, and other matters, such as Sudden Unexpected Death in Epilepsy [SUDEP].
Conclusion. The UK government plans to provide better services for those with epilepsy but, without enough money to employ more specialists, the information needs of patients may not be met. For concordance to work effectively doctors need to be aware of what patients think about their drugs, and patients need more information about treatment options. They also need more time to discuss the causes of epilepsy in order to reduce stigma and fear. Since time in consultations is short, clinicians should inform patients about epilepsy organisations, and direct them to websites such as the DIPEx (Personal Experiences of Health and Illness) epilepsy website (www.dipex.org/epilepsy), which focuses on patients' experiences of epilepsy and provides reliable information about medicines, other treatments, and resources.
Keywords. Concordance, epilepsy, information, Internet, stigma.
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Introduction |
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In the developed world, concordance, self-management, shared decision making, and choice are the key words being used in the management of chronic illness.1,2 For this to happen, information is vitally important, especially where choices can be complicated, as for patients with epilepsy and for the professionals caring for them. While some patients want to delegate responsibility for treatment decisions to their doctors, many want a more collaborative approach.3,4 Information enables patients to recognise the side effects of treatment, both good and bad, and helps people feel in control of their lives. Even patients who say they do not want to make treatment decisions should be offered information because it can alleviate fears and dispel misconceptions.5,6
In the 1980's seminal qualitative research drew attention to people's experience of epilepsy, and lack of information about the illness.6 At that time people often received diverse opinions about the cause of their seizures and encountered conflicting management strategies.7 In the 1990's numerous studies, mainly using questionnaires, found that people with epilepsy still lacked knowledge about the condition, and wanted more information. They required information on diagnosis, treatment options, medication and side effects, seizures and seizure control, injury prevention, psychological issues (especially stress), social security, driving and insurance, employment, prognosis, life style and social issues.8,9 A large representative UK survey of patients' perceptions of care found that although patient satisfaction was high, information provision was poor.10 Research in South London found that the patients who belonged to self-help groups knew most about epilepsy.11 However, a recent study conducted in ten European countries, which included 2249 people with epilepsy recruited only from support groups, still found clear gaps in knowledge, particularly about medication, and the cause of epilepsy.12
In this paper we explore why, at the turn of the 21st century, many people with epilepsy still want more information. While quantitative studies can provide us with the numbers of people who have or want more information, qualitative studies can shed more light on why some still feel a pressing need for particular types of information.
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Methods |
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The sample
With ethics committee approval, we invited men and women, throughout the UK, to take part in a qualitative research study of people's experience of epilepsy. Interviews contributed to the DIPEx website (Personal Experiences of Health and Illness; www.dipex.org/epilepsy).13 With their informed consent, we interviewed 35 people with epilepsy and three carers of someone with epilepsy. We chose a maximum variation sample to include younger and older people from various social backgrounds14 (see Table 1 for sample characteristics). Respondents were recruited through GPs, neurologists, support groups and charities. Information about the project was given to those who helped to recruit patients in the form of leaflets. One of the researchers (SP) was available to answer questions and to demonstrate the website when requested. Packs, which included a ‘patient information sheet’, an introductory letter, reply slip and stamped addressed envelope were given to potential participants by their GPs, hospital consultant or a member of their support group. Patients and carers who wished to take part then made contact with the researcher (SP), who discussed the project and who showed the website to the patient before the interview took place. Interviewing continued until the sample included men and women with experience of different treatments and until no new themes emerged from the data.15 People discussed many aspects of their experience (see Table 2), but here we report only what they said about information.
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The interviews
All but four participants were interviewed by one of the authors (SP), an anthropologist of Indian descent, in their homes in 2002. After signing a consent form they were asked to tell their story from when they first suspected a problem. Questions about specific issues were asked at the end of the interview. All interviews were audio-taped and lasted one to three hours. Interviews were then transcribed and sent to the respondents for review and verification. At this stage people were asked to approve the content of the interview and asked to sign a copyright form giving consent for the interview to be used on the website.
Analysis
Two members of the research team (SP an anthropologist and AC a sociologist) read and re-read the data and constructed a coding frame. Thematic categories, such as ‘finding information’, were subdivided into lower level categories such as ‘finding information/ unanswered questions’. Subsequent data analysis involved examining these themes across the whole data set as well as in the context of each individual's interview. NUD.IST (a qualitative data-indexing package) facilitated the coding and analysis of data.16 Authors (SP and AC) regularly discussed the coding and interpretation of results (for more information on our methods see www.dipex.org/aboutus_methodology.asp).
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Results |
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We briefly describe where people got their information (further analyses illustrated with audio and video clips can be found at www.dipex.org/epilepsy), and then explore why people with epilepsy still feel a need for more information.
Where people found information
Consultants played an important role in giving information, sometimes via a nurse. People also got information from other sources; through epilepsy organisations, first aid training, via leaflets, books, magazines, newspapers, videos and the Internet (see Box 1).
| BOX 1 Quotes to illustrate where some people obtained information R: "I think Professor X was the first one who gave me real insight into the illness ... I've had lots of leaflets sent to me from the office of the professor." (EP38, male aged 80) R: "I distinctly remember the first time going to my second consultant, him drawing me a diagram with the brain, and the spinal cord, and what was happening when one [a seizure] happened." (EP30, female aged 30) R: "The hospital has got a really great service, which I understand is the only thing of its kind, which is the Epilepsy Nurse Specialist. And I spoke to her and the service was actually her idea because you can't ring up doctors, they never have any time to talk to you. And I was seeing a specialist there who doesn't talk to anybody anyway ... I think that's an excellent service, I was so impressed with that. Because you've got somebody you can ring, she'll [epilepsy nurse] find out your answers and they'll ring back to you, which is the thing that I've been most impressed with the level of care by the specialists." (EP24, woman, aged 28) R: "The Epilepsy Association were excellent. Whenever we wanted advice or needed sort of a reference point or somebody to talk to, they were very, very good. And in that respect helped us a great deal ... they were certainly the one group of people if you like that helped us most." (EP19, man aged 43) R: "But with websites, they've always been very informative. The thing I've enjoyed the most with websites have been chat rooms really, because they've always very interesting when you can actually get out there and speak to people that have got the same condition as you have. Especially when you have the opportunity to speak to people that maybe are on the same drugs that you are, and they speak about the conditions and the side effects that they may have." (EP16, woman aged 21)
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Patients' unmet information needs
In the introduction we mentioned a recent quantitative study12 that found that even those who belonged to support groups knew relatively little about their medication, or about the causes of epilepsy. Our data help to explain why this information may be so important to people.
Medication. Many wanted to know why their drugs were chopped and changed. For example, this woman was keen to understand tests and medication:
I: "Would you prefer it if they told you why they've done the MRI scan and what it shows?"R: "Yeah what's going on, why am I like this and why is this medication not working and what's happening with me. It's just them, just changing the medication from one dose to another dose or from one drug to another drug, that's how it is. And they don't say, ‘Oh we did the scan and it showed this’, and ‘it showed that’ because they think oh maybe she wouldn't understand what we said to her. But I have done biology! (laughs). If they explained to me I would understand." (EP33, woman aged 27)
One woman said that her doctor gave her information leaflets, but these were not adequate:
R: "He said to me, ‘This is a new drug, it's been approved for a year but it's still slightly experimental’, and you feel like saying, ‘Well what's the basis of the approach for this drug?’ And they don't tell you. I mean he is very good and he gives me proper information sheets, but I have no idea of what is the, not philosophy, the thought process, whatever, behind it, you know of the approach.... I have no idea of where they're coming from to come up with this drug, what they think it's interacting with, why they think it works. And I personally would like to know that, and if this is thought to work why the hell then is that supposed to work when it comes from a completely different angle?" (EP11, woman aged 53)
It appears from this woman's account that she did not ask the doctor to tell her more about her medication. This may have been because patients often think the consultation is rushed:
R: "One of the criticisms people do have is the time they [consultants] have for you, it was virtually non-existent ... I still feel that there is no-where near the number of neurologists or epileptologists in the country that are needed." (EP21, man aged 45)
Some people were worried about the long-term side effects of drugs, and whether or not their medication was affecting memory and other aspects of daily life. One woman asserted that if she had been given more information about her medication she would have changed her life style to prevent osteoporosis:
R: "It was only when I changed my doctor, and got to see the consultant I'm seeing now, did anyone bother telling me that actually phenobarbitone withdraws calcium from the blood stream ..., and especially after the menopause there's a strong risk of osteoporosis. And I was furious that information hadn't been given to me sooner ... I could have done more work against osteoporosis by checking my diet, doing more exercise ... And this is why I think it is very, very important that doctors, consultants or GPs, at any level, give the patient as much information as they possibly can, not necessarily just what they think the patient can deal with at that moment in time." (EP26, aged 42)People also wanted to know more about newer treatments that might be available and what drugs do. For example, a woman who was a nurse was keen to have this information:
I: "Are there any questions that you would like to ask?"Women with epilepsy have particular needs related to childbearing.17 Some we interviewed were concerned about the effect of drugs on contraception, pregnancy and the unborn child. For example, a woman had not been told that anti-epileptic drugs could reduce the effectiveness of the contraceptive pill:R: "Yeah ... They tell you a little bit about the drugs, they don't tell you about all the new drugs obviously because you're not a doctor and you're not into that sort of work. But it's interesting to know what drugs do ... It would be nice to know about what treatment there is, I mean is there like with lots of medicine, is there more treatment out there if you're prepared to pay for it, that sort of thing." (EP15, aged 46)
R: "I actually would have liked more information initially on using the contraceptive pill and epilepsy medication—because the neurologist who originally diagnosed me forgot to mention that the fact that I was on the pill had implications, and that I should be on a higher dose. And it was only that I found out about that that the dose was increased. So potentially I could have become pregnant at a time which wouldn't have suited me ... I would have liked more information on that."Aetiology. While some people thought that their seizures had been caused by accidents, head injury, meningitis, measles, or stress, many said that their doctors had not confirmed this. Historically, the devil, other supernatural spirits, and mental illness have all been credited with causing seizures,6,18 and some respondents believe that this view still persists:I: "How did you find out about the pill and ... ?"
R: "Just from reading an article, by chance really, and then I thought, oh dear that's me!" (EP27, aged 31)
R: "And this stigma, there are still too many silly myths that are connected not necessarily in people's conscious awareness but in the background of their minds, this idea of witchcraft etc., is still there floating around in the atmosphere, in the air you know. The idea that because it is something affected by the central nervous system, affected by something in the brain, therefore there's a connection with mental illness." (EP26, woman aged 42)It appears that some people felt a sense of stigma because their doctors couldn't provide satisfactory answers. This may have been mainly ‘felt’ stigma rather than ‘enacted stigma’,19 but clearly a problem:
I: "Are there any questions that you feel you've never really got the answer to?"A woman who said that she knew her epilepsy was due to a chemical imbalance in the brain, appeared to resist stigma but still wanted to know what had triggered her epilepsy:R: "Well, no one has sat me down and said, ‘This is what epilepsy is’ ... It still seems very mysterious. It still has a stigma attached. There are still people out there who think it's the mark of the devil, and so on." (EP11, woman aged 53)
I: "Were there any questions that have never been answered?"In the Middle Ages disease was seen as a retribution for sin.20 One woman seemed keen to find the cause of her epilepsy, perhaps partly to confirm her moral worth:R: "Well, why did it begin? I've had people tell me I've got the devil in me and I think some people really believe that and it's absolutely shocking as far as I'm concerned. It's preposterous. It's ridiculous. It's just a chemical imbalance in my brain." (EP01, aged 48)
R: "I think that the only thing that I've never really had answered is why I actually got the condition in the first place. I mean there's just no reason for it, there's no history of it, I didn't do anything bad, I didn't bang my head. I didn't have any of these other classic type symptoms, so that's really the only thing I don't have the answer to." (EP24, aged 28)People had other information needs too. Some wanted to know more about tests, about different kinds of epilepsy, and about Sudden Unexpected Death in Epilepsy (SUDEP). The following quote illustrates why people want to know more about SUDEP:
R: "One of the questions, which I'm sure all epileptics would like to have answered, is more concrete answers on SUDEP, which is a very worrying question but it's something that seems to be very hazy, but we have absolutely no idea what is the concrete cause of it. It's just quite scary to think that one night we, any one of us, might just go to sleep and never wake up." (EP16, woman aged 21)
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Discussion |
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Our sample was selected to represent the widest practicable range of experiences of men and women with epilepsy. However, despite great efforts to recruit people from ethnic minority groups, almost all of our volunteers were white British men and women; interviews with people from other ethnic groups might have identified further issues. We present the data as themes, not as relative frequencies, because qualitative studies cannot represent the wider population numerically.21
Often no cause for epilepsy can be found, but the people we interviewed wanted to know as much as possible about causes, and what triggered seizures, partly it seems to combat stigma. There are many reasons for stigma,18 which may only be fully understood sociologically by looking at macro-issues of conflict and power in each society.22 People with other serious illness also suffer stigma.23 A recent study of those with lung cancer, for example, found that many experienced stigma because they were blamed for their disease because it was associated with smoking.24 However, because epilepsy is attributed to the supernatural and the devil, the stigma that people with epilepsy feel and experience may be even harder for them to resist. Wherever possible, clear explanations from clinicians to explain people's seizures might help to reduce at least one possible source of stigma. People should be reassured that the devil, witchcraft, supernatural and mental illness are not involved. In this way clinicians may be able to change how those with epilepsy, and society, view the disease, and thus reduce negative psychosocial consequences.
In poor communities, such as those found in parts of China,25 Taiwan, Hong Kong26 or Sub-Saharan Africa,27 people with epilepsy (and sometimes their families) seem to experience more stigma than those with epilepsy living in the Western world. In many African countries people have very negative attitudes to epilepsy. Not only is epilepsy attributed to supernatural forces, ancestral spirits, or witchcraft, but it is also considered contagious, especially during an attack.28 Members of the Pogoro tribe, living in Tanzania, for example, fear that saliva, other secretions or simply bodily contact may transfer evil spirits from a person having a convulsion to a bystander. This means that when someone is having a seizure other people may retreat in horror, leaving the person having the attack unprotected and vulnerable to harm.27 Thus in these societies it may be even more important for people with epilepsy and their families to learn about the possible causes of epilepsy. In one Pogoro community in Tanzania (Mahenge), where an epilepsy clinic has been operating for many years, a public education programme has changed attitudes to people with epilepsy, and their social status.27
The people we interviewed in the UK also wanted to know much more about their medication. In Western countries the choice of treatment for epilepsy is increasingly complex because so many drugs are available.29,30 Drugs need to be matched to the type of epilepsy and to the individual, who may, for example, be pregnant or potentially childbearing, elderly, or overweight.31 Often, the most suitable treatment regimen can be established only by trial and error, but it is important to inform patients well and to consult them at each stage.32 Leaflets can be provided simply and cheaply, but may be inadequate. The number of antiepileptic drugs marketed in different parts of the world almost trebled between 1989 and 2002,30 which makes it even more important to give people time to discuss the advantages and disadvantages of different drugs with doctors who specialise in the subject.
Time to discuss treatment options with every patient may be the ideal situation, but in other parts of the world this may not be possible. It is estimated that three quarters of people with epilepsy in Africa have no access to healthcare and are not appropriately treated. People living in parts of China or Africa may not realise that there is any treatment for epilepsy let alone a choice of treatment. Drugs may not be accessible for those on a low income and neurologist are hard to find.25,33
In 1997 a Global Campaign against Epilepsy was launched to bring epilepsy ‘Out of the Shadows’. This is a joint program of the World Health Organisation, the International League against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). It aims to reduce the treatment gap, educate health workers, dispel stigma, and support prevention by launching Demonstration Projects in Latin America, China and South East Asia.33
In February 2003 the UK government also produced a plan to improve services and the provision of information for people with epilepsy living in the UK.34 However, epilepsy charities and others have criticised the plan for not providing sufficient funds to underpin all the proposals. Some argue that more money is needed to double the number of epilepsy specialists and to improve primary care services.35
Meanwhile, to gauge the needs of individual patients, ideally GPs and consultants should find out whether patients want to be involved in each treatment decision, and what their information needs are. Directing patients toward reliable resources can help,36 partly because patients who come to the consultation well prepared may save valuable time.5
Our data suggest that no one source of information can supply all patients' information needs. However, people with chronic illness are now known to use the internet extensively to obtain information on many aspects of their illness.37 Since consultation time is short, doctors should inform patients about organisations for epilepsy, such as the National Society for Epilepsy (www.epilepsynse.org.uk) and Epilepsy Action (www.epilepsy.org.uk), and their websites. The DIPEx (Patients' Experiences of Health and Illness) epilepsy website (www.dipex.org/epilepsy)—which focuses on patients' experiences of epilepsy—can also inform, support and help patients make decisions. In Canada useful websites include Epilepsy Canada (www.epilepsy.ca), Epilepsy Ontario (www.epilepsyontario.org) and Epilepsy Toronto (www.epilepsytoronto.org). In the USA the Epilepsy Foundation (www.efa.org), the national voluntary organisation representing people with epilepsy, provides information on a wide range of topics.
Patient involvement should not be restricted to the articulate middle classes with access to the Internet.38 Video, audio and written information from the DIPEx epilepsy web site is also available on CD/DVD, which can be used in libraries, doctors' surgeries and other convenient places. For their part, patients need to voice their concerns and their information needs clearly, and say whether they want to share in treatment decisions.
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Declaration |
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Funding: the study was funded by Sir Siegmund Warburg's Voluntary Settlement and the Welton Foundation.
Ethical approval: this study was approved by a multiple research ethics committee.
Conflicts of interest: AM and AH are co-founders of DIPEx and AC is on the DIPEx steering group.
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Acknowledgments |
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We thank all the men and women who took part in the interviews, those who helped to recruit volunteers and the members of our advisory panel. We should also like to thank Sue Ziebland, Sasha Shepperd and three anonymous referees for their useful comments on an earlier draft of this paper.
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