Search

Objectives: To examine the care experiences of South Asian Sikh and Muslim patients in Scotland with life limiting illness and their families and to understand the reasons for any difficulties with access to services and how these might be overcome., Design: Prospective, longitudinal, qualitative design using in-depth interviews., Setting: Central Scotland., Participants: 25 purposively selected South Asian Sikh and Muslim patients, 18 family carers, and 20 key health professionals., Results: 92 interviews took place. Most services struggled to deliver responsive, culturally appropriate care. Barriers to accessing effective end of life care included resource constrained services; institutional and, occasionally, personal racial and religious discrimination; limited awareness and understanding among South Asian people of the role of hospices; and difficulty discussing death. The most vulnerable patients, including recent migrants and those with poor English language skills, with no family advocate, and dying of non-malignant diseases were at particularly high risk of inadequate care., Conclusions: Despite a robust Scottish diversity policy, services for South Asian Sikh and Muslim patients with life limiting illness were wanting in many key areas. Active case management of the most vulnerable patients and carers, and "real time" support, from where professionals can obtain advice specific to an individual patient and family, are the approaches most likely to instigate noticeable improvements in access to high quality end of life care. Improving access to palliative care for all, particularly those with non-malignant illnesses, as well as focusing on the specific needs of ethnic minority groups, is required.

Objective: To assess the adequacy of cross cultural adaptations of survey questions on self reported tobacco and alcohol consumption in the United Kingdom., Design: Assessment of consistency of data between studies identified through literature review. Studies evaluated with 12 guidelines developed from the research literature on achieving cross cultural comparability., Results: The literature review identified 18 key studies, five of them on national samples. Survey instruments were obtained for 15 of these. The comparison of prevalence data in national surveys showed some important discrepancies, greater for tobacco than for alcohol. For example, prevalence of cigarette smoking in Bangladeshi women was 6% in a national survey in 1994 and 1% in a national survey in 1999; in Chinese men it was 31% in a survey in 1993-4 and 17% in one in 1999; in African-Caribbean men it was 29% in a 1992 survey and 42% in one in 1993-4. The most guidelines met by any study was three, although one study partly met a fourth. Two studies met no guidelines. Only four studies consulted with ethnic minority communities in developing the questionnaire, none checked each language version with all others, and two stated the questionnaire had not been validated., Conclusions: Surveys have not followed best practice in relation to measurement of risk factors in cross cultural settings. There is inconsistency in the prevalence data on smoking provided by different major national UK studies. Users of such data should be aware of their limitations. Research is needed to help achieve linguistic equivalence of survey questions in cross cultural research.

Objective: To gain detailed understanding of influences on smoking behaviour in Bangladeshi and Pakistani communities in the United Kingdom to inform the development of effective and culturally acceptable smoking cessation interventions., Design: Qualitative study using community participatory methods, purposeful sampling, one to one interviews, focus groups, and a grounded approach to data generation and analysis., Setting: Newcastle upon Tyne, during 2000-2., Participants: 87 men and 54 women aged 18-80 years, smokers and non-smokers, from the Bangladeshi and Pakistani communities., Results: Four dominant, highly inter-related themes had an important influence on smoking attitudes and behaviour: gender, age, religion, and tradition. Smoking was a widely accepted practice in Pakistani, and particularly Bangladeshi, men and was associated with socialising, sharing, and male identity. Among women, smoking was associated with stigma and shame. Smoking in women is often hidden from family members. Peer pressure was an important influence on smoking behaviour in younger people, who tended to hide their smoking from elders. There were varied and conflicting interpretations of how acceptable smoking is within the Muslim religion. Tradition, culture, and the family played an important role in nurturing and cultivating norms and values around smoking., Conclusion: Although there are some culturally specific contexts for smoking behaviour in Bangladeshi and Pakistani adults-notably the influence of gender and religion-there are also strong similarities with white people, particularly among younger adults. Themes identified should help to inform the development and appropriate targeting of smoking cessation interventions.

Objective: To compare coronary risk factors and disease prevalence among Indians, Pakistanis, and Bangladeshis, and in all South Asians (these three groups together) with Europeans., Design: Cross sectional survey., Setting: Newcastle upon Tyne., Participants: 259 Indian, 305 Pakistani, 120 Bangladeshi, and 825 European men and women aged 25-74 years., Main Outcome Measures: Social and economic circumstances, lifestyle, self reported symptoms and diseases, blood pressure, electrocardiogram, and anthropometric, haematological, and biochemical measurements., Results: There were differences in social and economic circumstances, lifestyles, anthropometric measures and disease both between Indians, Pakistanis, and Bangladeshis and between all South Asians and Europeans. Bangladeshis and Pakistanis were the poorest groups. For most risk factors, the Bangladeshis (particularly men) fared the worst: smoking was most common (57%) in that group, and Bangladeshis had the highest concentrations of triglycerides (2.04 mmol/l) and fasting blood glucose (6.6 mmol/l) and the lowest concentration of high density lipoprotein cholesterol (0.97 mmol/l). Blood pressure, however, was lowest in Bangladeshis. Bangladeshis were the shortest (men 164 cm tall v 170 cm for Indians and 174 cm for Europeans). A higher proportion of Pakistani and Bangladeshi men had diabetes (22.4% and 26.6% respectively) than Indians (15.2%). Comparisons of all South Asians with Europeans hid some important differences, but South Asians were still disadvantaged in a wide range of risk factors. Findings in women were similar., Conclusion: Risk of coronary heart disease is not uniform among South Asians, and there are important differences between Indians, Pakistanis, and Bangladeshis for many coronary risk factors. The belief that, except for insulin resistance, South Asians have lower levels of coronary risk factors than Europeans is incorrect, and may have arisen from combining ethnic subgroups and examining a narrow range of factors.

Much historical research on race, intelligence, and health was racist, unethical, and ineffective. The concepts of race and ethnicity are difficult to define but continue to be applied to the study of the health of immigrant and ethnic minority groups in the hope of advancing understanding of causes of disease. While a morass of associations has been generated, race and ethnicity in health research have seldom given fundamental new understanding of disease. Most such research is "black box epidemiology." Researchers have not overcome the many conceptual and technical problems of research into ethnicity and health. By emphasising the negative aspects of the health of ethnic minority groups, research may have damaged their social standing and deflected attention from their health priorities. Unless researchers recognise the difficulties with research into ethnicity and health and correct its weaknesses, 20th century research in this subject may suffer the same ignominious fate as that of race science in the 19th century.

Objective: To assess knowledge, views, and behaviour of researchers on criteria for authorship and causes and control of gift authorship., Design: Interview survey of stratified sample of researchers., Setting: University medical faculty., Subjects: 66 staff (94% response rate) comprising several levels of university academic and research appointments., Main Outcome Measures: Awareness and use of criteria for authorship, views on which contributions to research merit authorship, perceptions about gift authorship and strategies for reducing it, and experiences of authorship problems., Results: 50 (76%) respondents supported criteria for authorship, but few knew about or used available criteria. Of the five people who could specify all three criteria of the International Committee of Medical Journal Editors, only one knew that all criteria had to be met. Forty one respondents (62%) disagreed with this stipulation. A range of practical and academic contributions were seen as sufficient for authorship. Gift authorship was perceived as common, promoted by pressure to publish, to motivate research teams, and to maintain working relationships. A signed statement justifying authorship and a published statement of the contribution of each author were perceived as practical ways of tackling gift authorship. Most researchers had experienced problems with authorship, most commonly the perception that authorship had been deserved but not awarded (49%)., Conclusion: There seems to be a gap between editors' criteria for authorship and researchers' practice. Lack of awareness of criteria is only a partial explanation. Researchers give more weight than editors to practical research contributions. Future criteria should be agreed by researchers and not be imposed by editors.