The dilemmas of providing welfare in an ethnically diverse state : seeking reconciliation in the role of a 'reflexive practitioner'

Despite an increasing commitment to tackle disadvantage and discrimination, welfare states in the West struggle to provide accessible and appropriate health and social care to people of minority ethnic populations. This article analyses the dilemmas of welfare provision in an ethnically diverse state by drawing on empirical findings from a qualitative study exploring the perceptions and experiences of family life and social support for people of Pakistani origin living in the UK, and its interface with the state as a site of potentially competing and conflicting sets of social values. We conclude by suggesting that a notion of 'reflexive practitioner' is fundamental to generating a critical insight that can deal with the tensions posed by diversity for a welfare state

Addressing ethnicity in social care research

This article surveys recent developments in relation to the dimensions of ethnicity and ethnicdisadvantage in social policy research and practice, with a focus on social care. While therehas been limited increase in attention to ethnicity within general policy discussion andincreasing sophistication within specialist debates, advances in theory and methodology havelargely failed to penetrate the research mainstream, let alone policy or practice. This is along-standing problem. We advocate more focussed consideration of ethnicity and ethnicdisadvantage at all levels. Failure to do so creates the risk of social policy research being leftbehind in understanding rapid changes in ethnic minority demographics and patterns of migration, with increasing disadvantage to minorities

Policy Briefing: Implementing empirical ethics and rights - IDEAS for ensuring disability equity in research

Research collaboration between University of York, De Montfort University and Lancaster UniversityIn this policy briefing, we illustrate the development and potential of tools developed from commissioned public health research project where empirical ethics was combined with human rights to elucidate a critical framework for conducting and evaluating Randomised Controlled Trials (RCTs) in public health and disabilit

Decision-making and ante-natal screening for sickle cell and thalassaemia disorders : To what extent do faith and religious identity mediate choice?

When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaemia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communities (Muslim, Sikh, Hindu and Christian), at risk of haemoglobin disorders, living in England. Our findings suggest that the decision about whether or not to have diagnostic testing generally related to attitudes towards the termination of pregnancy. The consequences of the condition were as important as religious beliefs to most people. More generally, faith beliefs emerged as negotiable and contingent: realized within a broader moral framework. Religion was felt not to be prescriptive and reproductive decisions were seen as personal. When making decisions, people utilize faith within a broader context of individual, family and social relationships

Family support and cardiac rehabilitation: A comparative study of the experiences of South Asian and White-European patients and their carer's living in the United Kingdom

Background: Effective lifestyle modification facilitated by cardiac rehabilitation is known to reduce the occurrence of adverse coronary events and mortality. South Asians have poorer outcomes after a myocardial infarction than the general UK population, but little is known about their experiences of family support, cardiac rehabilitation and lifestyle change. Aims: To explore the nature of family support available to a sample of South Asian and White-European cardiac patients and to highlight similarities and differences between these groups with regard to cardiac rehabilitation and lifestyle modification. Methods: Using a qualitative approach, semi-structured interviews (in 1 of 6 languages) were conducted by researchers with; 45 South Asian patients and 37 carers and 20 White-European patients and 17 carers. Interviews were conducted in a home setting, up to eighteen months after discharge from hospital following myocardial infarction, coronary artery bypass surgery or unstable angina. Results: The main themes that emerged related to the provision of advice and information, family support and burden, dietary change and exercise regimes. Conclusions: Several cultural and ethnic differences were identified between patients and their families alongside similarities, irrespective of ethnicity. These may represent generic characteristics of recovery after a cardiac event. Health professionals should develop a cultural repertoire to engage with diversity and difference. Not every difficulty a person encounters as they try to access appropriate service delivery can be attributed to ethnic background. By improving services generally, support for South Asian populations can be improved. The challenge is to know when ethnicity makes a difference and mediates a person's relationship with service support and when it does not. (C) 2007 European Society of Cardiology. Published by Elsevier B.V. All rights reserved

Can general practitioner commissioning deliver equity and excellence? : Evidence from two studies of service improvement in the English NHS

Objectives: To explore some of the key assumptions underpinning the continued development of general practitioner-led commissioning in health services. Methods: Qualitative data from two studies of service improvement in the English NHS were considered against England's plans for GP-led commissioning. These data were collected through in-depth interviews with a total of 187 professionals and 99 people affected by services in 10 different primary care trust areas across England between 2008 and 2009. Results: Internationally, GPs are seen to have a central position in health systems. In keeping with this, the English policy places emphasis on the 'pivotal role' of general practitioners, considered to be ideally placed to commission in the best interests of their patients. However, our evidence suggests that general practitioners do not always have a pivotal role for all patients. Moreover, it is planned that the new commissioning groups in England will not be subject to top-down performance management and this raises the question of how agreed quality standards will be met under the proposed new system. Conclusions: This paper questions the assumption that GPs are best placed to commission health services in a way that meets quality standards and leads to equitable outcomes. There is little evidence to suggest that GPs will succeed where others have failed and a risk that, without top-down performance management, service improvement will be patchy, leading to greater, not reduced, inequity

Causal attributions, lifestyle change and coronary heart disease: illness beliefs of patients of South Asian and European origin living in the UK

OBJECTIVE We examined and compared the illness beliefs of South Asian and European patients with coronary heart disease (CHD) about causal attributions and lifestyle change. METHODS This was a qualitative study that used framework analysis to examine in-depth interviews. SAMPLE The study comprised 65 subjects (20 Pakistani-Muslim, 13 Indian-Hindu, 12 Indian-Sikh, and 20 Europeans) admitted to one of three UK sites within the previous year with unstable angina or myocardial infarction, or to undergo coronary artery bypass surgery. RESULTS Beliefs about CHD cause varied considerably. Pakistani-Muslim participants were the least likely to report that they knew what had caused their CHD. Stress and lifestyle factors were the most frequently cited causes for CHD irrespective of ethnic grouping, although family history was frequently cited by older European participants. South Asian patients were more likely to stop smoking than their European counterparts but less likely to use audiotape stress-relaxation techniques. South Asian patients found it particularly difficult to make dietary changes. Some female South Asians developed innovative indoor exercise regimens to overcome obstacles to regular exercise. CONCLUSION Misconceptions about the cause of CHD and a lack of understanding about appropriate lifestyle changes were evident across ethnic groups in this study. The provision of information and advice relating to cardiac rehabilitation must be better tailored to the context of the specific needs, beliefs, and circumstances of patients with CHD, regardless of their ethnicity

Achieve equity in access to sickle cell services

Greater priority, and appropriate resources, need to be accorded to the provision of sickle cell and thalassaemia services. Sickle cell and thalassaemia disorders are among the most common genetic conditions in the world. In the UK, the condition affects about 15,000 people of all ethnic backgrounds but is more common in people of black African or African-Caribbean, Mediterranean and Asian origin. There are encouraging moves towards networks of clinical care based around centres with medical and nursing staff with specialist knowledge. Yet legitimate questions remain about the lack of priority accorded to sickle cell and thalassaemia services

Quest for certainty regarding early discharge in paediatric low-risk febrile neutropenia : a multicentre qualitative focus group discussion study involving patients, parents and healthcare professionals in the UK

OBJECTIVES: A systematic review of paediatric low-risk febrile neutropenia found that outpatient care is safe, with low rates of treatment failure. However, this review, and a subsequent meta-ethnography, suggested that early discharge of these patients may not be acceptable to key stakeholders. This study aimed to explore experiences and perceptions of patients, parents and healthcare professionals involved in paediatric febrile neutropenia care in the UK. SETTING: Three different centres within the UK, purposively selected from a national survey on the basis of differences in their service structure and febrile neutropenia management. PARTICIPANTS: Thirty-two participants were included in eight focus group discussions. PRIMARY OUTCOMES: Experiences and perceptions of paediatric febrile neutropenia care, including possible future reductions in therapy. RESULTS: Participants described a quest for certainty, in which they attempted to balance the uncertainty involved in understanding, expressing and negotiating risk with the illusion of certainty provided by strict protocols. Participants assessed risk using both formal and informal stratification tools, overlaid with emotional reactions to risk and experiences of risk within other situations. The benefits of certainty provided by protocols were counterbalanced by frustration at their strict constraints. The perceived benefits and harms of previous inpatient care informed participants' appraisals of future treatment strategies. CONCLUSIONS: This study highlighted the previously underestimated harms of admission for febrile neutropenia and the paternalistic nature of decision making, along with the frustrations and challenges for all parties involved in febrile neutropenia care. It demonstrates how the same statistics, generated by systematic reviews, can be used by key stakeholders to interpret risk differently, and how families in particular can view the harms of therapeutic options as different from the outcomes used within the literature. It justifies a reassessment of current treatment strategies for these children and further exploration of the potential to introduce shared decision making