• Evidence of cultural hybridity in responses to epilepsy among Pakistani Muslims living in the UK

      Small, Neil A.; Ismail, Hanif; Rhodes, P.J.; Wright, J. (2005)
      Objectives: To examine how people from Bradford's Pakistani Muslim community experience living with epilepsy. Specifically, the paper addresses social interactions and negotiations with care providers and considers how different understandings of epilepsy are integrated. Methods: Interviews were conducted with a sample of Bradford's Pakistani Muslim community ( n=20). Interviews were analysed to identify themes and significant areas of shared concern. Results: This paper identifies popular, professional and folk sectors contributing to an individual's `health system'. Where sectors overlap, zones of hybridity are created: that is, a person might simultaneously seek help from a doctor and from a religious healer, or might offer explanations for seizures that include neurological and spiritual components. Discussion: While there are many similarities between the experiences of these minority ethnic community members and published work on the lived experience of epilepsy in other communities, there are also important differences that service providers need to recognize and respond to. Differences include forms of cultural expression and specific language needs. Improving communication between professionals and persons with epilepsy needs to be prioritized.
    • Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

      Powell, Catherine; Ismail, Hanif; Cleverley, R.; Taylor, A.; Breen, Liz; Fylan, Beth; Alderson, S.L.; Alldred, David P. (2021-08)
      Background: How to meaningfully partner with patients as data analysts remains obscure. A process evaluation of the ‘Improving the Safety and Continuity Of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial of an intervention for improving medicines use for people living with heart failure is being conducted. The intervention includes patient held information on heart medicines and care, enhanced communication between hospital and community pharmacists, and increased engagement of community pharmacists with patient care post-hospital discharge. ISCOMAT patients living with heart failure were interviewed about experiences with the intervention. We sought to gain insights from patients on data collected to enhance our understanding of experiences with the intervention. Objective: To develop a method for involving patients as analysts of qualitative data in a process evaluation. Design: Patients and researchers co-analysed qualitative data. A framework method was applied involving; familiarisation, coding, developing an analytical framework and interpretation. The process was facilitated through home working and a workshop with a training component. Results: The co-designed framework enabled researchers to map all further patient interview data. Patients' specialist knowledge enhanced understanding of how the ISCOMAT intervention can be best implemented. Conclusions: Patients’ unique experiences can enhance validity and rigour in data analysis through sharing their interpretations of qualitative data. The involvement process is crucial in elucidating knowledge and avoiding tokenism. As analysts, patients gain an appreciation of research processes, building trust between researchers and patients. Group dynamics and involving patients throughout the whole research process are important considerations.
    • Quality of care in diabetic patients attending routine primary care clinics compared with those attending GP specialist clinics.

      Ismail, Hanif; Wright, J.; Rhodes, P.J.; Scally, Andy J. (2006)
      Aim To determine the impact on clinical outcomes of specialist diabetes clinics compared with routine primary care clinics. Methods Observational study measuring clinical performance (process/outcome measures) in the primary care sector. A cohort of patients attending specialist diabetes clinics was compared with a control cohort of patients attending routine primary care clinics. Results Patients seen in specialist diabetes clinics had a significantly higher HbA1c than patients in routine primary care clinics (mean difference 0.58%; P < 0.001) but there was no significant difference in rate of improvement with visits compared with primary care clinics. In contrast, patients seen in the routine primary care clinics had significantly higher cholesterol levels (mean difference 0.24 mmol/l; P < 0.001) compared with patients in specialist diabetes clinics and their improvement was significantly greater over time (mean difference 0.14 mmol/l per visit compared with 0.10 mmol/l; P < 0.006). Patients in routine primary care clinics also had significantly higher diastolic blood pressure (mean difference 1.6 mmHg; P < 0.007) but there was no difference in improvement with time compared with specialist diabetes clinics. Uptake of podiatry and retinal screening was significantly lower in patients attending routine primary care clinics, but this difference disappeared with time, with significant increases in uptake in the primary care clinic group. Weight increased in both groups significantly with time, but more so in the specialist clinic patients (mean increase 0.18 kg per visit more compared with routine clinic primary care patients; P < 0.001). Conclusions This study provides evidence that the provision of primary care services for patients with diabetes, whether traditional general practitioner clinics or diabetes clinics run by general practitioners with special interests, is effective in reducing HbA1c, cholesterol and blood pressure. However, the same provision of care was unable to prevent increasing weight or creatinine over time. No evidence was found that patients in specialist clinics do better than patients in routine primary care clinics.
    • South Asians and epilepsy: Exploring health experiences, needs and beliefs of communities in the north of England.

      Ismail, Hanif; Wright, J.; Rhodes, P.J.; Small, Neil A.; Jacoby, A. (2005)
      Purpose: To examine the beliefs and experiences of South Asians with epilepsy and the extent of provision of appropriate information and accessible services for them by health professionals. Methods: Qualitative interviews with 30 South Asians with epilepsy, 16 carers and 10 health professionals. In addition, two focus groups were held with 16 South Asians without epilepsy recruited from community centers. The interview sample was divided by religious groupings (Hindus, Sikhs and Muslims). Fieldwork was conducted in Bradford and Leeds (England Results: Beliefs that epilepsy is caused by spirit possession (Muslims) or attributable to sins committed in a past life (Sikhs and Hindus) were reported as being widely held among South Asians living both in the UK and the Indian subcontinent, although few informants themselves subscribed to such views. Compliance with conventional medication was high; however, those who experienced seizures most often were most likely to turn to traditional South Asian therapies. Most informants used both treatments simultaneously. The main issues regarding the provision of services were: lack of appropriate information and advice; language and communication barriers; problems in interaction with health professionals. Also discussed were the potential merits of attending support groups. Greatest dissatisfaction was expressed in relation to primary care, whereas the highest praise was reserved for specialist epilepsy nurses. Conclusions: Our findings show both similarities and differences between participants¿ experiences, where gender, age or other aspects of personal biography can be as important as religion, culture or country of origin. Furthermore, the impact of being diagnosed with epilepsy can be exacerbated by structural impediments to accessing information and appropriate services.
    • The use of biomedicine, complementary and alternative medicine, and ethnomedicine for the treatment of epilepsy among people of South Asian origin in the UK

      Rhodes, P.J.; Small, Neil A.; Wright, J.; Ismail, Hanif (2008)
      Studies have shown that a significant proportion of people with epilepsy use complementary and alternative medicine (CAM). CAM use is known to vary between different ethnic groups and cultural contexts; however, little attention has been devoted to inter-ethnic differences within the UK population. We studied the use of biomedicine, complementary and alternative medicine, and ethnomedicine in a sample of people with epilepsy of South Asian origin living in the north of England. Interviews were conducted with 30 people of South Asian origin and 16 carers drawn from a sampling frame of patients over 18 years old with epilepsy, compiled from epilepsy registers and hospital databases. All interviews were tape-recorded, translated if required and transcribed. A framework approach was adopted to analyse the data. All those interviewed were taking conventional anti-epileptic drugs. Most had also sought help from traditional South Asian practitioners, but only two people had tried conventional CAM. Decisions to consult a traditional healer were taken by families rather than by individuals with epilepsy. Those who made the decision to consult a traditional healer were usually older family members and their motivations and perceptions of safety and efficacy often differed from those of the recipients of the treatment. No-one had discussed the use of traditional therapies with their doctor. The patterns observed in the UK mirrored those reported among people with epilepsy in India and Pakistan. The health care-seeking behaviour of study participants, although mainly confined within the ethnomedicine sector, shared much in common with that of people who use global CAM. The appeal of traditional therapies lay in their religious and moral legitimacy within the South Asian community, especially to the older generation who were disproportionately influential in the determination of treatment choices. As a second generation made up of people of Pakistani origin born in the UK reach the age when they are the influential decision makers in their families, resort to traditional therapies may decline. People had long experience of navigating plural systems of health care and avoided potential conflict by maintaining strict separation between different sectors. Health care practitioners need to approach these issues with sensitivity and to regard traditional healers as potential allies, rather than competitors or quacks.
    • 'What really annoys me is people take it like it's a disability'. Epilepsy, disability and identity among people of Pakistani origin living in the UK.

      Rhodes, P.J.; Small, Neil A.; Ismail, Hanif; Wright, J. (2008)
      This paper reports on a study of Pakistani people with epilepsy. It explores their attitudes towards their condition, others’ attitudes, its impact on their lives, and the extent to which they considered themselves as disabled. Epilepsy was variously interpreted within biomedical, folk and religious paradigms. In line with popular understandings, participants associated disability with stable, permanent and visible physical impairments and did not consider themselves as disabled. However, they also recognised a social dimension to their experience. Much of the distress and disadvantage they experienced was socially determined, both through direct prejudice and discrimination, and indirectly through a fear of others’ negative reactions. However, the invisible and unpredictable nature of epilepsy meant that they could conceal their condition and thereby mitigate its social effects. ‘Disability’ was not experienced as a static and permanent state but as a potential identity that was both contingent and contested. The literature portrays people moving from biomedical to social interpretations of disability. However, the tensions experienced by people in the study were more between competing religious interpretations of their condition and, to some extent, between religious and medical approaches. Conceptions of disability, which are presented in the literature as antagonistic and mutually exclusive, were experienced as different dimensions reflecting the complexity of experience. The paper concludes by suggesting that for many people, for whom disability is an ambiguous, contingent and contested identity, public self-identification as disabled is an unrealistic goal. Rather than conceiving of disability as primarily physical or primarily social, it would be better construed as a complex interweaving of multiple factors—physical, environmental, socio-cultural and psychological factors.