Centre for Research in Primary Care, Impact of Faith Identity on the Healthcare and Health of Pakistani Muslims Based on study about chronic illness in the Pakistani community and looking particularly at the processes of communication and decision-making in chronic illness management. The study was funded by the NHS Executive. Chronic illness was chosen because of the high prevalence of certain conditions such as diabetes and coronary heart disease in this population. Communication is commonly identified as an important issue in studies of ethnicity and health and this process along with decision-making was chosen because both are able to show other influences related to age, gender, social class and the illness experience itself (Charmez and Olsen 1997) which may also affect the experience of Pakistani people with chronic illness. Taking account of these influences was an important way to avoid essentialising religion and exaggerating its influence. Ghazala Mir Centre for Research in Primary Care, University of Leeds

Historical frameworks (1) The Enlightenment Separation of Church and state Redefinition of religion as ‘belief’ Public truth related to science Religious beliefs related to private life Exclusion of religion from scientific inquiry The literature review revealed two historical frameworks that influence the place of religion in general and Islam in particular in Europen discourse about Muslim identity. First, the Enlightenment notion that religion is a private matter to be disassociated from public life, particularly from the scientific enterprise. The practice of excluding religion from the realms of scientific inquiry has been linked historically to the ‘Enlightenment’ of seventeenth and eighteenth-century Europe as part of the process through which the power of the Church over the state was gradually eroded. (Asad T 1993, Genealogies of religion : discipline and reasons of power in Christianity and Islam Johns Hopkins University Press, Baltimore.pp 205, 207): ‘the constitution of the modern state required the forcible redefinition of religion as belief, and of religious belief, as a personal matter that belonged to private (as opposed to public) life ……it has become commonplace among historians of modern Europe to say that religion was gradually compelled to concede the domain of public power to the constitutional state, and of public truth to natural science… This construction of religion ensures that it is part of what is inessential to our common politics, economy, science, and morality.’ (adapted) Enlightenment notions of knowledge and truth were further developed through the modernist movement in science. The insistence on sensory experience as the only reliable source of scientific knowledge can also traced back to these attempts to free science from the grip of official Church doctrine. Sense experience, available to everyone, was adopted as the sole source of scientific knowledge with the deliberate intention of excluding revelation from the scientific enterprise and thus freeing scientists from the control of the Church (Ragab 1993). Religious experience was thus simultaneously defined as irrational, unverifiable and scientifically meaningless (ibid). The development of scientific inquiry in Europe, of which sociological studies are a part, were thus shaped and developed by European culture, ideology and politics. Exploration of the impact of religion on the health of Pakistani Muslims has been limited by this context and the available literature is consequently sparse. The alternative framework of race or ethnicity has generally been adopted to explore health and healthcare. However, the construction and use of ethnic categories, though often adopted by people from minority ethnic groups, has also been described as an essentially racist imposition by the dominant ethnic group, which has led to the possible racialisation of health research (Barot 1993; Dyson 1998). Specific ethnic categories, such as those developed for the Census, may not correlate with terms used by social groups for self-identification (Rankin and Bhopal 1999). Confusion surrounding ethnic categories can also result in inconsistency and inaccuracy in the terms used to describe these groups (Bhopal and Rankin 2002). Contemporary definitions of ethnicity emphasise the need to unpack categories such as ‘Asian’ which imply homogeneity across wide geographical areas and to break the concept down into its different dimensions (Karlsen and Nazroo 2002).

(2) Orientalism Islamophobia in Europe Said (1995): imaginative, racist, anti-empirical accounts of Islam rather than factual, objective and based on internal evidence. Used to justify imperialism. Runnymede Trust (1997) CRE Survey (1998): Commission of British Muslims against Islamophobia (2004): racism related to Muslim practices Second historical framework of relevance is the tradition of Orientalism, w hich portrays Islam as inferior to Western culture and Muslims as people to be feared and controlled. Edward Said 1995, Orientalism Penguin Books, London (read above) Three more recent publications have shown that these ideas are still very much in circulation: A survey of attitudes towards ethnic minorities by the Commission for Racial Equality found that all the negative stereotypes it documented referred to Muslim practices. These appeared to be associated with a perception that Muslims were ‘invading’ the UK and the refusal to assimilate rather than colour was the main obstacle to acceptance (Commission for Racial Equality 1998). These findings suggest that the status of individuals and groups in UK society depends on how far they possess attributes valued by the majority. The degree of Muslim deviance from these attributes and their maintenance of a ‘foreign culture’ appears to arouse more resentment than prejudice based on colour alone (ibid). These two historical frameworks have resulted in ways of thinking and behaving that have consequences for the everyday lives of Pakistani Muslims in the UK and for their healthcare and health.

Health Inequalities in the UK Muslim communities Worst self-reported health of all religious groups Disadvantage in areas affecting health eg employment: highest unemployment education: lowest number of graduates housing: most overcrowding Census 2001 figures suggest that the health inequalities experienced by Pakistani communities are part of a bigger picture in which faith identity is significant. Muslim communities (read above). In the fieldwork area the socio economic position of different religious groups is shown in the next slide

Religion and Socio-economic position All people in the fieldwork area aged 16-74 breakdown of the socio-economic position of different religious groups in Leeds, where fieldwork for the study took place. Membership of the Muslim community is more than double any other minority religious group in the city yet the numbers of Muslim people in higher social class categories is similar to but in percentage terms, Muslim representation in higher socio-economic groups is lower than any other faith community.

Pakistani communities Diabetes 3-6 times more common, more likely to suffer complications Coronary heart disease 2-3 times more common. Child mortality for women born in Pakistan double the national rate Compared with the white population, Type 2 diabetes is up to six times more common in Pakistani people. The risk of death from diabetes is between three and six times higher, with this group also being particularly susceptible to the cardiovascular and renal complications of diabetes. Death rates from heart disease are also two to three times higher in this group (Acheson 1998). The high level of health inequalities within the Pakistani community is noted in the NHS Plan: ‘children of women born in Pakistan are twice as likely to die in their first year than children of women born in the UK.’ (Department of Health 2000: paragraph 13.15) Management of chronic conditions also appears to be poorer in this community than in the general population. Among men aged 50-64 and with a limiting long-term illness, the proportion of Pakistani men reporting their health as ‘not good’ is almost double the national average and higher than other minority ethnic communities. Findings for Bangladeshi people and Indian Muslims present a similar profile, again suggesting that the common faith between these groups may be a reason why they are particularly disadvantaged in relation to other ethnic groups.

Methods Ethnographic methodology Importance of context Taking account of other aspects of identity Managing ‘regimes of truth’ during analysis Semi-structured interviews, informal and participant observation: patients, carers, health professionals, community groups, ‘key informants’, media and elists Participatory research methods This methodology thus recognises the social context of an individual’s life and the fact that people are patients for very little of their illness experience. The majority of their time is spent in their own families, communities and environments rather than in medical settings. Exploring the views of Muslims within a secular sociological framework means that Islam is treated as a social construction An ethnographic approach goes some way towards enabling the two constructions of knowledge – Islamic and sociological - to co-exist. It allows the adoption of a framework which attempts to understand social groups on their own terms and emphasises the ‘subjective meanings’ of social agents (Hammersley and Atkinson 1995). At the stage of analysis, the interplay between differing ‘regimes of truth’ is explored and differing views about what is true and false are balanced against each other. The validity of such views is explored irrespective of their origin and irrespective of how dominant or marginalized a particular view may be in UK society as a whole. Qualitative interviews were carried out with 31 Pakistani people who had been diagnosed with a chronic illness in the last year. Twenty-two of these individuals were interviewed a second time six months later and 20 a third time, a year to 16 months after their original interview. Successive interviews aimed to build on significant themes, which had arisen in the previous set of interviews. It was also possible to tailor specific questions to individuals based on what they had previously said. The three interviews thus helped build a very detailed picture of respondents along with an understanding of their most important concerns and values. People with chronic illness were asked to identify a person who was most involved in supporting them to gain information and make decisions about their health and eleven carers in total were interviewed towards the end of the fieldwork period helped develop understanding of family dynamics in relation to chronic illness management A cross section of primary and secondary care health professionals from various health services related to chronic illness management were included. Detailed observations of interactions were conducted in a diabetes clinic, a cardiac rehabilitation clinic and two community health clinics Semi structured interviews with health professionals included a range of diabetes practitioners (consultants, specialist nurses, dietitians and podiatrist) along with consultants in cardiology, oncology and mental health as well as GPs, interpreters and community health visitors. Ten people with chronic illness gave consent to interview a professional who had an influence on their health behaviour and decisions. Local, national and international events relating to Pakistani and Muslim populations that were reported in the media e-lists organised by Muslim groups at local, national and international levels. participatory methods were added in the third round of interviews to improve the depth of response from respondents who had limited formal education or experience of research. This method involved visual cues using a map of the fieldwork area and images of key themes that had arisen in previous interviews. (see Johnson and Webster 2000, Reaching the Parts ... Community Mapping, Working Together to Tackle Social Exclusion and Food Poverty Sustain; Oxfam, London.

Findings Religion as a personal resource Emotional distance and framework for decision-making Framework for decision-making Undermined by policy stance on faith organisations In healthcare contexts avoided by patients and practitioners alike Gap in knowledge filled by stereotypes particularly about women and fatalism In family and community based settings faith acted as a personal resource. findings reveal that reference to faith is considered part of an appropriate response to a diagnosis of chronic illness by Pakistani people. Religious beliefs provide a therapeutic resource and can offer individuals an emotional distance from the chronic illness by placing this in the wider context of human experience as a whole. Religious teachings provide meaning to the experience of illness and can encourage ways of responding that decrease anxiety and depression. Religion was an important value framework and influenced the health decisions of over half the final sample, with a prime or secondary level of influence for a third of patients. The data suggests that for respondents who accorded religion a prime position, these beliefs and teachings came prior to and determined their own judgement in all areas. In such instances, religious teachings had more authority than any other influence on decision-making. For other respondents religion had a more advisory role and was often grouped with the influence of family members, health professionals and friends. Findings showed that an individual’s level of religious practice was affected not only by personal choice but also by the family and community context. Lack of support to incorporate ritual aspects of religious practice into everyday life weakened the ability of people to fulfil the ritual obligations of Islam, such as prayer, and thus to draw on these as a resource in chronic illness management Using religious teachings that conveyed health messages was an important means of adapting health promotion material to the cognitive framework of those who attended these activities and increasing trust in the workers. Notions of the body as a trust from God were used to promote the idea of personal responsibility, preventive healthcare and an active approach to seeking out advice for health problems.

Religion and Healthcare “ Fasting and prayer do not concern the doctors… they don't even know what it is” Diabetes patient “ when I think of a White patient sitting at home and not getting out I think I can understand and you know there's some common ground there… in the Pakistani communities … I start by having very little common ground, I've not been sitting at home in a Pakistani family to understand what's going on” Diabetes consultant Patients believe professionals won’t understand/ will undermine/will dismiss their beliefs and practices. Practitioenrs often felt they were not equipped to enter this type of discussion because they had limited knowledge of the cultural context of Pakistani patients. This lack of confidence on both sides presented a block to shared understanding about how patient beliefs affected decisions about treatment. This meant that the context in which patients made decisions was not taken into account in treatment choices. Reference to religious beliefs in clinical contexts was rare and, when this did occur, was related to specific acts that required adjustments to treatment or self-care, such as fasting or going on Hajj. Patients sometimes expected health professionals to consider acts such as fasting to be unimportant. Consequently, they did not consult their doctors about how to manage treatment in this situation for fear that they would be advised not to fast. These respondents felt that professional advice in relation to religious obligations would be subjective rather than impartial and inclined towards undermining rather than supporting their faith. A minority of health professionals did engage with this aspect of patients' lives to support their decision-making about self-care, however most tended to treat such decisions as a personal matter to be left to the patient’s discretion. Patients often contributed to this lack of dialogue through their own assumptions about health professionals who did not share their cultural background.

Stereotypes: Muslim women “I’ve only joined the practice in recent years and I can’t claim that I know her and her family background solidly, …and with language difficulties I’ve not been able to encourage her to tell me what’s going on at home she’s coming and just briefly telling me ‘I’m tired doctor, I’m a bit depressed’ you know and when we go through it all, ‘yeah well you’ve got loads of kids haven’t you and you’ve got housework and I understand your husband doesn’t help’.” General Practitioner The vacuum in knowledge about the lifestyle and beliefs of Pakistani patients was often filled with stereotypes, particularly in relation to women and ideas about fatalism. Women were often seen as oppressed by male members of their family even though there was no evidence of this – the woman referred to in this quotation had actually experienced a very traumatic labour in which she was subjected to physical abuse and racism by midwives. This had left her feeling extremely distressed and she went to the GP seeking help for this. [a dietitian, for example, felt she should not question a female patient about why she was not following dietary advice because she had come with her husband and might not want to talk openly in front of him.]

Stereotypes: fatalism A: It seemed to be his religious belief that he was happy to let his life take its toll and he wasn’t really interested in the intervention. Q: So was he taking medication? A: He was on medication but wouldn’t go on to the insulin injections. Q: Oh right. Okay. So it wasn’t, I mean his belief wasn’t that you should just leave everything. A: No….. Again that’s across the board…. patients will take a tablet for anything, you know, and we’re all a bit like that….Well, if you think of it in personal terms, if somebody said to me “You’re going to have injections for the rest of your life.” I mean, it’d take us a long time to ... adapt (Diabetes Nurse Specialist) A patient who refused to go on to insulin was seen as fatalistic and not interested in an intervention even though he was taking regular medication. The kind of challenge posed by the interviewer in this quotation was unusual - lack of engagement with Pakistani patients and lack of Pakistani staff in healthcare settings meant that there was usually no challenge to stereotypical views of health professionals, which mostly centred around the faith identity of patients.

Findings Corruption of the communication process affects diagnosis and negotiation of treatment Pakistani people receive inadequate support in decision-making about chronic illness management and are more likely to develop complications. Problems with communication affected diagnosis and the negotiation of treatment with Pakistani people. Diagnosis could be inaccurate because practitioners denied credibility to Pakistani patients and also made assumptions about their religious beliefs and family dynamics. Instead of engaging with non-compliant patients to negotiate a way forward that was mutually acceptable and to offer support where it was needed, practitioners could sometimes just feel ‘stuck’ These findings suggest explanations for the higher risk of complications and the worse outcomes that Pakistani people with diabetes are known to experience.

The Determinants of Health Discrimination mirrored in almost all contexts education employment civic participation Self-perception of social position and social relations (Marmot 2004): psychosocial capital as explanation for higher levels of mortality and morbidity Racism and discrimination within clinical settings reflected dynamics within the wider social context Respondent accounts reflected a perception that this discrimination was inescapable and permeated all areas of their experience, many of which are related to health Apart from healthcare settings, education, work, neighbourhood, social group contexts and public places were all sites in which Pakistani respondents said they had experienced racism and Islamophobia. Even within their own homes respondents experienced this kind of hostility via the media. There was a consensus within the Pakistani community that the mainstream media played a significant part in creating and maintaining Islamophobia in the UK: community organisations regularly packaging themselves in terms of ethnic identity because of known hostility to faith-based activity, particularly by Muslims. Lack of support for faith organisations such as Muslim schools gives a powerful message of social exclusion and the expectation of assimilation into the majority culture. There is evidence that awareness of the discrimination they experience is as significant to the health of Pakistani people as the discrimination itself. Marmot (2004) has demonstrated that an individual’s ‘subjective status’ is a strong predictor of health. How much control an individual has and the extent of opportunities for full social engagement in society have been shown to be crucial to explain health inequalities. Self-perceptions of social position and social relations are markers of psychological wellbeing, which has been identified as an important indicator of health status (ibid). Although stress factors have previously been identified as relevant to addressing health inequalities in minority ethnic communities, these have been related to socio-economic position and membership of ‘deprived income communities’ (Horn and Beal 2004). Findings from this study indicate that stress factors for Pakistani communities are likely to include Islamophobia, and that this may equally affect those from higher socio-economic groups. There is further evidence that this kind of discrimination may be more intense for those who choose the ‘visual identifiers’ of Muslim identity, such as the hijab (Allen 2002).

Implications Practice Policy Research and activism Developing shared understanding and common ground with Muslim perspectives Policy support for Muslims to organise on the basis of faith identity. lack of engagement with alternative beliefs and values has been shown to result in a disparity in expectations and an emotional distance between patients and professionals (Bhopal 1997). Inability to form a holistic relationship may lie at the root of suboptimal care, poor take-up of services and other types of discrimination such as stereotyping (Auluck and Iles 1991; Bowler 1993; Vangen et al 1996). Failure to acknowledge the significance of religious identity also means that the influence it can have on interaction is not addressed in professional training programmes. The unequal power relationships that many Pakistani people experience and the dichotomy in community and wider perceptions of Islam suggest important explanations for the higher levels of mortality and morbidity in Pakistani communities. Healthcare policies which urge cultural competence need therefore to emphasise not only the general importance of developing shared understanding but also the specific impact of faith practices on treatment and medication. Failure to target particularly disadvantaged social groups within these strategies means that they are overlooked in implementation. Supporting, rather than restricting faith-based activity within Pakistani communities would appear to be one way of addressing the problems outlined above – not only would this counter the current message of social exclusion, these organisations could also draw faith beliefs as a resource in adapting current methods used to address inequalities in health, education, employment, housing and other determinants of health. In terms of research and activism this study shows that religious identity is an important aspects of identity alongside other influences such as ethnicity, age, gender and social class. The disadvantage experienced by Pakistani Muslims is exacerbated by ethnicity and gender – limited English and visible differences in dress and skin colour and the stereotypes and increased visibility of Muslim women all add to the level of discrimination Pakistani people experience. This analysis suggests that although religion cannot replace ethnicity (or for that matter social class, age and gender) as a way of defining Pakistani communities, it can contribute to a more complete picture of their experience. As such, religion provides an alternative means of identification that may at times be more appropriate than other frameworks to understanding health inequalities within this community.