Dying at home: A qualitative study of the perspectives of older South Asians living in East London

South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their perspectives and experiences on end-of-life care. Aim: To explore beliefs, attitudes and expectations expressed by older South Asians living in East London about dying at home. Methodology and methods: Five focus groups and 29 in-depth semi-structured interviews were conducted with a total of 55 older adults (24 men and 31 women) aged between 52 to 78 years. Participants from six South Asian ethnic groups were recruited via 11 local community organisations. Data were analysed using a constructive grounded theory approach. Findings: Two key themes were identified. The theme of ‘reconsidering the homeland’ draws on the notion of ‘diaspora’ to help understand why for many participants the physical place of death was perceived by many as less important than the opportunity to carry out cultural and religious practices surrounding death. The second theme ‘home as a haven’ describes participants’ accounts of how their home is a place in which it is possible to perform various cultural and religious rituals. Cultural and religious practices were often seen as essential to achieving a peaceful death and honouring religious and filial duties. Conclusion: Older people of South Asian ethnicity living in East London perceive home as more than a physical location for dying relatives. They make efforts to adhere, but also adapt, to important social and cultural values relating to death and dying as part of the wider challenge of living in an emigrant society

A multi-centre qualitative study exploring the experiences of UK South Asian and White Diabetic Patients referred for renal care

Background An exploration of renal complications of diabetes from the patient perspective is important for developing quality care through the diabetic renal disease care pathway. Methods Newly referred South Asian and White diabetic renal patients over 16 years were recruited from nephrology outpatient clinics in three UK centres - Luton, West London and Leicester – and their experiences of the diabetes and renal care recorded. A semi-structured qualitative interview was conducted with 48 patients. Interview transcripts were analysed thematically and comparisons made between the White and South Asian groups. Results 23 South Asian patients and 25 White patients were interviewed. Patient experience of diabetes ranged from a few months to 35 years with a mean time since diagnosis of 12.1 years and 17.1 years for the South Asian and White patients respectively. Confusion emerged as a response to referral shared by both groups. This sense of confusion was associated with reported lack of information at the time of referral, but also before referral. Language barriers exacerbated confusion for South Asian patients. Conclusions The diabetic renal patients who have been referred for specialist renal care and found the referral process confusing have poor of awareness of kidney complications of diabetes. Healthcare providers should be more aware of the ongoing information needs of long term diabetics as well as the context of any information exchange including language barriers

Doing research with children and young people who do not use speech for communication

Despite emphasis in policy on participation of disabled children, we still know relatively little about how to obtain the views of disabled children with significant communication impairment and their views are often overlooked in planning and service provision. This article describes how the views of children who do not use speech were accessed in research aiming to identify disabled children and young people's priorities regarding outcomes of social care and support services. The main challenge was to develop a method that was reliable, non-threatening, enjoyable and relevant to individual children, as well as enabling children to think beyond their everyday life and express what they aspire to

Provider diversity in the English NHS: a study of recent developments in four local health economies

Objectives: The overall objective of the research was to assess the impact of provider diversity on quality and innovation in the English NHS. The aims were to map the extent of diverse provider activity, identify the differences in performance between Third Sector Organisations (TSOs), for-profit private enterprises, and incumbent organisations within the NHS, and the factors that affect the entry and growth of new private and TSOs. Methods: Case studies of four Local Health Economies (LHEs). Data included: semi-structured interviews with 48 managerial and clinical staff from NHS organizations and providers from the private and Third Sector; some documentary evidence; a focus group with service users; and routine data from the Care Quality Commission and Companies House. Data collection was mainly between November 2008 and November 2009. Results: Involvement of diverse providers in the NHS is limited. Commissioners’ local strategies influence degrees of diversity. Barriers to the entry for TSOs include lack of economies of scale in the bidding process. Private providers have greater concern to improve patient pathways and patient experience, whereas TSOs deliver quality improvements by using a more holistic approach and a greater degree of community involvement. Entry of new providers drives NHS Trusts to respond by making improvements. Information sharing diminishes as competition intensifies. Conclusions: There is scope to increase the participation of diverse providers in the NHS, but care must be taken not to damage public accountability, overall productivity, equity and NHS providers (especially acute hospitals, which are likely to remain in the NHS) in the process

Autonomy of Nations and Indigenous Peoples and the Environmental Release of Genetically Engineered Animals with Gene Drives

This article contends that the environmental release of genetically engineered (GE) animals with heritable traits that are patented will present a challenge to the efforts of nations and indigenous peoples to engage in self‐determination. The environmental release of such animals has been proposed on the grounds that they could function as public health tools or as solutions to the problem of agricultural insect pests. This article brings into focus two political‐economic‐legal problems that would arise with the environmental release of such organisms. To address those challenges, it is proposed that nations considering the environmental release of GE animals must take into account the underlying circumstances and policy failures that motivate arguments for the use of the modified animals. Moreover, countries must recognize that the UN International Covenant on Civil and Political Rights and the UN International Covenant on Economic, Social and Cultural Rights place on them an obligation to ensure that GE animals with patented heritable traits are not released without the substantive consent of the nations or indigenous peoples that could be affected

Social inclusion and valued roles : a supportive framework

The aim of this paper is to examine the concepts of social exclusion, social inclusion and their relevance to health, well-being and valued social roles. The article presents a framework, based on Social Role Valorization (SRV), which was developed initially to support and sustain socially valued roles for those who are, or are at risk of, being devalued within our society. The framework incorporates these principles and can be used by health professionals across a range of practice, as a legitimate starting point from which to support the acquisition of socially valued roles which are integral to inclusio

Blue remembered skills : mental health awareness training for police officers

The Bradley Report (Bradley, 2009) has raised a number of important questions regarding the treatment of individuals who are experiencing mental health problems and find themselves in the criminal justice system. One of the key recommendations is that professional staff working across criminal justice organisations should receive increased training in this area. This paper explores the experiences of two professionals, a mental health nurse and a social worker, involved in providing training for police officers. It goes on to consider the most effective models of training for police officers

Can health trainers make a difference with difficult-to-engage clients? A multisite case study

A political attempt in the United Kingdom to address health inequalities in the past decade has been the government’s initiative to employ local health trainers (HTs) or health trainer champions (HTCs) to support disadvantaged individuals with aspects of their health-related behaviors. HT/HTCs provide health-related information and support to individuals with healthy eating, physical activity, and smoking cessation. They undertake community engagement and direct individuals to relevant health services. They differ in that HTs are trained to provide health interventions to individuals or groups and to make referrals to specialist health care services when necessary. This article provides an evaluation of HT/HTCs interventions across three sites, including one prison, one probation service (three teams), and one mental health center. An evaluation framework combining process and outcome measures was employed that used mixed methods to capture data relating to the implementation of the service, including the context of the HT/HTCs interventions, the reactions of their clients, and the outcomes reported. It was found that HT/HTCs interventions were more effective in the prison and mental health center compared with the probation site largely as a result of contextual factors

The cost of changing physical activity behaviour: Evidence from a "physical activity pathway" in the primary care setting

Copyright @ 2011 Boehler et al.BACKGROUND: The ‘Physical Activity Care Pathway’ (a Pilot for the ‘Let’s Get Moving’ policy) is a systematic approach to integrating physical activity promotion into the primary care setting. It combines several methods reported to support behavioural change, including brief interventions, motivational interviewing, goal setting, providing written resources, and follow-up support. This paper compares costs falling on the UK National Health Service (NHS) of implementing the care pathway using two different recruitment strategies and provides initial insights into the cost of changing physical activity behaviour. METHODS: A combination of a time driven variant of activity based costing, audit data through EMIS and a survey of practice managers provided patient-level cost data for 411 screened individuals. Self reported physical activity data of 70 people completing the care pathway at three month was compared with baseline using a regression based ‘difference in differences’ approach. Deterministic and probabilistic sensitivity analyses in combination with hypothesis testing were used to judge how robust findings are to key assumptions and to assess the uncertainty around estimates of the cost of changing physical activity behaviour. RESULTS: It cost £53 (SD 7.8) per patient completing the PACP in opportunistic centres and £191 (SD 39) at disease register sites. The completer rate was higher in disease register centres (27.3% vs. 16.2%) and the difference in differences in time spent on physical activity was 81.32 (SE 17.16) minutes/week in patients completing the PACP; so that the incremental cost of converting one sedentary adult to an ‘active state’ of 150 minutes of moderate intensity physical activity per week amounts to £ 886.50 in disease register practices, compared to opportunistic screening. CONCLUSIONS: Disease register screening is more costly than opportunistic patient recruitment. However, additional costs come with a higher completion rate and better outcomes in terms of behavioural change in patients completing the care pathway. Further research is needed to rigorously evaluate intervention efficiency and to assess the link between behavioural change and changes in quality adjusted life years (QALYs).This article is available through the Brunel Open Access Publishing Fund

District Health Managers' Perceptions of Supervision in Malawi and Tanzania.

Mid-level cadres are being used to address human resource shortages in many African contexts, but insufficient and ineffective human resource management is compromising their performance. Supervision plays a key role in performance and motivation, but is frequently characterised by periodic inspection and control, rather than support and feedback to improve performance. This paper explores the perceptions of district health management teams in Tanzania and Malawi on their role as supervisors and on the challenges to effective supervision at the district level. This qualitative study took place as part of a broader project, "Health Systems Strengthening for Equity: The Power and Potential of Mid-Level Providers". Semi-structured interviews were conducted with 20 district health management team personnel in Malawi and 37 council health team members in Tanzania. The interviews covered a range of human resource management issues, including supervision and performance assessment, staff job descriptions and roles, motivation and working conditions. Participants displayed varying attitudes to the nature and purpose of the supervision process. Much of the discourse in Malawi centred on inspection and control, while interviewees in Tanzania were more likely to articulate a paradigm characterised by support and improvement. In both countries, facility level performance metrics dominated. The lack of competency-based indicators or clear standards to assess individual health worker performance were considered problematic. Shortages of staff, at both district and facility level, were described as a major impediment to carrying out regular supervisory visits. Other challenges included conflicting and multiple responsibilities of district health team staff and financial constraints. Supervision is a central component of effective human resource management. Policy level attention is crucial to ensure a systematic, structured process that is based on common understandings of the role and purpose of supervision. This is particularly important in a context where the majority of staff are mid-level cadres for whom regulation and guidelines may not be as formalised or well-developed as for traditional cadres, such as registered nurses and medical doctors. Supervision needs to be adequately resourced and supported in order to improve performance and retention at the district level