Findings

Understanding the health experiences, needs and beliefs in communities in Bradford

Findings

Perceptions of epilepsy

The most commonly used term for epilepsy - regardless of ethnic group - was the word mirgee, which means 'fit' but has a very negative connotation. Common explanations shared across all groups for having epilepsy were stress, family history, physical trauma, and previous health problems. Some Muslims perceived epilepsy as fate or spiritual possession whereas some Hindus and Sikhs believed sins committed in a past life caused the condition. Community members added other explanations like consanguineous marriages. Some respondents felt that people from the wider community shunned them due to fear of 'catching' epilepsy. Others mentioned that the wider community saw people with epilepsy as having some kind of disability.

Family support

Carers regarded epilepsy as a condition that made their relatives socially vulnerable. Some people with epilepsy tended to see their condition as a personal tragedy others expressed their concerns about not being able to fulfil expected family responsibilities. People with epilepsy had to frequently confront and negotiate barriers as well as engage with the negative attitudes about epilepsy held by their family. Over-protection was sometimes a main source of tension between people with epilepsy and their families. Some respondents had mixed feelings about the role (protectors and comforters) their families played. Others felt that their families were ashamed for having an 'epileptic' relative and mentioned isolation and exclusion even from family events.

Impact on lifestyle

Respondents' concerns about the impact of epilepsy on their lifestyle were directly linked to whether epilepsy was a barrier for them in completing their education, in seeking employment, in finding a marriage partner, in having a 'normal' social life and in driving. Disruption of education was a particular problem for some respondents, whereas others felt that epilepsy had limited their choices of employment. Finding a suitable marriage partner was seen as a difficult process for many respondents. Some did not disclose their epilepsy to their partners until a seizure was witnessed. The impact of epilepsy upon people's social lives differed according to the severity and risk of seizures. Some felt that they could not perform simple tasks like go to the corner shop, watch TV or read a book. However most respondents cited restrictions upon driving as having a major impact on their social lives.

Traditional South Asian therapies

More than half of the sample had sought help from traditional South Asian therapies usually as a second-line rather than an alternative to anti-epileptic drugs. All those who had used other therapies had experienced continued seizures, despite compliance with prescribed anti-epileptic drugs. Younger people in particular expressed considerable scepticism about the effectiveness of traditional South Asian treatments. They were usually persuaded by family or friends to use such therapies. Most respondents made use of mainly two forms of traditional South Asian therapies: religious healing and herbal treatment. In most cases (for Muslims) religious healing involved consultations with pirs (religious healer) and gurus (for Hindus and Sikhs). Respondents were usually required to drink blessed water or recite from holy texts. Some Muslims were instructed to wear an amulet (taweez) containing verses from the Koran. Other respondents visited herbal practitioners (hakims) in the hope of finding a cure for their epilepsy.

Service provision

Respondents raised four main issues concerning their experiences of service provision:

• Lack of information - was a common complaint voiced by the majority of respondents. The need for information increased when respondents were faced with life changing events such as puberty, pregnancy or menopause. Those diagnosed at a young age and whose parents could not communicate in English were further disadvantaged. Most health professionals from the sample said they did provide explanations and information about epilepsy when requested to do so by patients, however, time restrictions during the consultation process left little opportunity for deeper discussion. Health professionals believed educated people are more inquisitive about their condition. Respondents and health professionals agreed that epilepsy needs more attention from the mainstream media.
• Language barriers - One-third of the respondents with epilepsy were not fluent in spoken English. There was very limited use of official interpreters in consultations. Usually family members took on this role. However, some people felt embarrassed at the idea of discussing personal problems through family members. Also not all the carers interviewed were happy about interpreting; they admitted having difficulty in translating medical terminology. Health professionals expressed concerns about impartiality and confidentiality issues with such arrangements.
• Interaction with health professionals - More than half of the respondents expressed dissatisfaction with their own (community) GPs. They believed their GPs lacked specific knowledge of epilepsy and were unable/unwilling to deal with sensitive issues. Most people, however, were satisfied with their specialist GPs and consultants. Epilepsy nurses were regarded as the most helpful health professionals due to their easy accessibility and holistic approach. They were considered essential in providing a further understanding of epilepsy and by reaching communities in a number of ways.
• Support groups - A high number of respondents were open minded about the idea of attending support groups but were faced with practical everyday issues like problems with childcare or transport. Some were more concerned about the language the group would be conducted in or whether the group would be mixed or single gendered. Other respondents felt that support groups were equally important for their families. However, not all respondents were keen on the idea of attending support groups. They did not want to be constantly reminded of their condition.