Waqar I. U. Ahmad

The moral economy of selfhood and caring: negotiating boundaries of personal care as embodied moral practice

This paper engages with the dichotomous notions of caring underpinning social policy and practice in Britain, that splits up the carer and cared for into autonomous, unitary subjects, by locating personal care as an embodied, moral practice within a theoretical framework of relational ontology. Drawing on empirical accounts and narratives related to personal care within the context of advanced cancer, we argue that personal care involves negotiation of boundaries between notions of relatedness and legitimate dependence on one hand, and independence and integrity of the embodied self on the other; and we analyse how these boundaries are informed by particular cultural or religious scripts on gender, relatedness, conjugality and filial obligations. The paper draws on data and analysis based on observations and in-depth interviews with White and South Asian participants between 19 and 89 years of age receiving treatment for cancer, and family members closely involved in their personal care. In using a comparative method for analysis and understanding caring as an embodied moral practice and site of subjectivity across cultural/religious groups, it is suggested that ethnicity is not necessarily the only useful analytical concept to explore the illness and caring experiences of research participants from minority ethnic backgrounds.

Discrimination and health in an English study

In this study we examine the relationship between education, racial discrimination and health among white (n=227), African Caribbean (n=213) and Indian and Pakistani (n=233) adults aged between 18 and 59 years living in Leeds, England, as measured in a stratified population survey. Measures of discrimination included any physical attack, verbal abuse and a combined variable, any discrimination due to race, colour, ethnicity or sex. Analyses were conducted examining the relationship between education and discrimination, discrimination and health, and discrimination and health controlling for education. People educated above secondary level were more likely than people educated to secondary level or below to report being physically attacked, verbally abused and exposed to discrimination. People from minority ethnic groups (African Caribbean and Indian Pakistani) were more likely to be verbally abused and exposed to discrimination than the white group. Ethnicity and education interacted for African Caribbeans, such that respondents with post-school qualifications were more likely to report verbal abuse or any discrimination. There was no association between having been exposed to any kind of discrimination and having fair or poor health. Physical attack and any discrimination were associated with anxiety, worry and depression. The results remained unchanged when ethnicity and education were included in the models. Education and ethnicity were associated with differences in exposure to discrimination. In turn, exposure to discrimination was associated with higher levels of anxiety, worry or depression although there was no association between discrimination and health. The results support the contention that racial discrimination may play an important role in modifying the relationship between ethnicity, socioeconomic position and health. The counter-intuitive relationship between education and levels of reported discrimination in non-minority ethnic groups highlights the value of explicitly modeling discrimination to gain a better understanding of the social determinants of health.

The Impact of Different Measures of Socioeconomic Position on the Relationship Between Ethnicity and Health

PURPOSEnIn this study we explicitly examine the effect of using asset-based and conventional measures of socioeconomic position (SEP) on ethnic differences in health.nnnMETHODSnThe survey of white (n = 227), Indian and Pakistani (n = 233), and African Caribbean (n = 213) adults aged 18 to 59 years living in Leeds, United Kingdom aimed to examine the relationship between ethnicity, health, and SEP. SEP variables included perceived ability to get 10,000 pounds if needed, car ownership, level of education, and home ownership. Health variables included self-reported health status, presence of a long-term illness or disability, presence of limitations arising from a long-term illness or disability, one or more limitations in mobility, obesity, and being anxious, worried, or depressed. Logistic regression analysis was used to assess the relationship between ethnicity and SEP and health. Five models were run for each health variable so that the effects of changing the SEP measure could be ascertained. The first model included only ethnicity and the remaining 4 models tested the effects of the perceived ability to get 10,000 pounds, car ownership, level of education, and home ownership separately.nnnRESULTSnThe results suggest that the statistical inclusion of asset-based SEP measures, such as car ownership and ability to obtain 10,000 pounds, which reflect an individuals ability to mobilize resources, tend to increase ethnic differences in health, whereas more conventional steady-state indicators, such as education level and home ownership, tended to have little effect or to reduce ethnic differences in health.nnnCONCLUSIONSnOverall, this study suggests that the choice of SEP measure may affect the conclusion of research on ethnicity and health and that choice of SEP measures should in turn be informed by the research problem being examined.

Supporting Asian deaf young people and their families: the role of professionals and services

This paper discusses how Asian deaf young people and their families engage with welfare provision. Our findings, based on group and individual interviews with young deaf people and individual interviews with their parents, explore the assumptions underlying current provision and how they influence the options available to young people and their families. The paper suggests that the welfare state exerts a form of social control where professional help, although well intended, may disempowers Asian deaf people by privileging oralism over sign language, and western norms over other cultural values. On the other hand, positive constructions of deafness privilege Deaf identity while failing to accommodate ethnic or religious diversity, resulting in Asian deaf young people and their families having an ambivalent relationship with the Deaf community. We argue that services need to recognise and address the reasons for this ambivalence if they are to adequately engage Asian deaf people and their families.

Citizens' participation in primary healthcare planning: Innovative citizenship practice in empirical perspective

The British National Health Service has been the focus of sustained political rhetoric in favour of greater public and patient involvement in decision making. The creation of Primary Care Groups--organizations based on local groups of general practitioners--has thus been accompanied by a requirement that they involve users and the public. This article reports on a study of Primary Care Groups (n = 167) to address two questions. First, how have the groups responded to this requirement? Second, can user and public involvement activities be related to broader changes with regard to the roles and expectations of citizens? The study indicated significant activity around public and patient involvement but also a tendency among informants to rationalize these activities in terms of a professional commitment to quality and responsiveness (rather than in relation to the expressed preferences of local citizens). In terms of the second question the results provide some, contestable, evidence of realignments in the values, priorities and assertiveness of individuals and communities of interest with regard to the state. The impact of such phenomena is, though, highly dependent upon how managers and clinicians in Primary Care Groups choose to prioritize the views of local service users and residents in relation to professional judgement, operational requisites, planning constraints and limited resources.

Examining the family-centred approach to genetic testing and counselling among UK Pakistanis: a community perspective.

WHO advice suggests a family-centred approach for managing the elevated risk of recessively inherited disorders in consanguineous communities, whilst emerging policy recommends community engagement as an integral component of genetic service development. This paper explores the feasibility of the family-centred approach in the UK Pakistani origin community. The study took place within a context of debate in the media, professional and lay circles about cousin marriage causing disability in children. Using qualitative methods, a total of six single-sex focus group discussions (nu2009=u200950) were conducted in three UK cities with a high settlement of people of Pakistani origin. Tape-recorded transcripts were analysed using framework analysis. Kinship networks within Pakistani origin communities are being sustained and marriage between close blood relatives continues to take place alongside other marriage options. Study participants were critical of what was perceived as a prevalent notion that cousin marriage causes disability in children. They were willing to discuss cousin marriage and disability, share genetic information and engage with genetic issues. A desire for accurate information and a public informed about genetic issues was articulated whilst ineffective communication of genetic risk information undermined professionals in their support role. This study suggests a community that is embracing change, one in which kinship networks are still active and genetic information exchange is taking place. At the community level, these are conditions supportive of the family-centred approach to genetic testing and counselling.

Development of guidelines to facilitate improved support of South Asian carers by primary health care teams

BACKGROUNDnEvidence based guidelines are regarded as an appropriate basis for providing effective health care, but few guidelines incorporate the views of users such as carers.nnnAIMnTo develop guidelines to assist primary health care teams (PHCTs) in their work with carers within South Asian communities.nnnMETHODSnThe guidelines were drawn up by a development group consisting of members of teams in areas with South Asian communities (Leicester and Bradford). The teams were invited to make their recommendations based on a systematic review of literature on minority ethnic carers and the findings of a study of the needs and experiences of local South Asian carers. A grading system was devised to enable the teams and a group of expert peer reviewers to assess the quality of evidence in support of each recommendation.nnnRESULTSnThe teams agreed seven recommendations, graded according to available evidence and strength of opinion. External peer review supported the PHCTs interpretation of evidence and their recommendations. The recommendations included consideration of communication and information for carers, coordination of care within teams, and recognition by team members of the roles of carers and their cultural and religious beliefs.nnnCONCLUSIONnThere are particular steps that PHCTs can take to improve their support of South Asian carers. It is possible to develop guidelines that take users views into account and incorporate evidence from qualitative studies.

The applicability of measures of socioeconomic position to different ethnic groups within the UK

BackgroundIn this paper we seek to tease out differences in socioeconomic position between ethnic groups. There are 3 main reasons why conventional socioeconomic indicators and asset based measures may not be equally applicable to all ethnic groups:1) Differences in response rate to conventional socioeconomic indicators2) Cultural and social differences in economic priorities/opportunities3) Differences in housing quality, assets and debt within socioeconomic strataMethodsThe sample consisted of White (n = 227), African-Caribbean (n = 213) and Indian and Pakistani (n = 233) adults aged between 18 and 59 years living in Leeds as measured in a stratified population survey. Measures included income, education, employment, car ownership, home ownership, housing quality, household assets, investments, debt, perceived ability to obtain various sums and perceived level of financial support given and received.ResultsResponse rates to education and income questions were similar for the different ethnic groups. Overall response rates for income were much lower than those for education and biased towards wealthier people. There were differences between ethnic groups in economic priorities/opportunities particularly in relation to car ownership, home ownership, investment and debt. Differences in living conditions, household assets and debt between ethnic groups were dependent on differences in education; however differences in car ownership, home ownership, ability to obtain £10 000, and loaning money to family/friends and income from employment/self employment persisted after adjustment for education.ConclusionIn the UK, education appears to be an effective variable for measuring variation in SEP across ethnic groups but the ability to account for SEP differences may be improved by the addition of car and home ownership, ability to obtain £10 000, loaning money to family/friends and income from employment/self employment. Further research is required to establish the degree to which results of this study are generalisable.

Ethnicity and Health Key Themes in a Developing Field

Ethnicity is a social division that is increasingly difficult to ignore. Ethnicity has to be considered alongside other social divisions including socioeconomic status which is crucial to explaining minority disadvantages in health. Identity is a key dimension of ethnicity, which encompasses self-ascribed and externally-imposed elements. The stigma associated with particular conditions, combined with the effects of racism and economic marginalization, can be central to some minority groups ability to discuss disease and seek treatment. In a world where human rights are taken seriously, minority ethnic groups presence in research has to become a routine consideration, rather than an optional extra. In research, as in service provision, planning for linguistic and cultural diversity represents additional work and will require extra resources.

Ethnicity, health and health services utilization in a British study

Despite the exponential growth in the number of studies addressing ethnicity and health, there is considerable debate about definitions of ethnicity, the appropriate use of ethnicity in health research and whether research focusing on ethnicity in the health field will ultimately result in reduced disadvantage or will simply contribute to the reification of ethnic origin as a cause of health problems. The authors present and discuss health outcomes among White (n = 227), African-Caribbean (n = 213) and Indian and Pakistani (n = 233) adults aged between 18 and 59 years living in Leeds as measured in a stratified population survey, with particular emphasis on the interaction between reports of health conditions and health status in relation to ethnicity and gender. The survey included both general and specific measures of health and impairment and was undertaken following extensive qualitative fieldwork. Overall the results of the study suggest that adults in both broad minority ethnic groups studied have a somewhat less favourable profile of physical and mental health and risk factors such as obesity and low birthweight. Despite an absence of ethnic differences in reporting of long-term conditions, minority groups had lower health status because those with long-term conditions were generally in worse health than their White counterparts. The study findings agree with previous research in suggesting that variation in health status was better explained by specific measures of actual limitations in daily activities than by general measures of limiting long-term illness. These data suggest that limiting long-term illness or disability questions may underestimate functional limitation relative to more specific measures and consequently their use in resource allocation may be problematic.