Objectives: To review current understanding of the knowledge and information needs of informal caregivers in palliative settings. Data sources: Seven electronic databases were searched for the period January 1994-November 2006: Medline, CINAHL, PsychINFO, Embase, Ovid, Zetoc and Pubmed using a meta-search engine (Metalib®). Key journals and reference lists of selected papers were hand searched. Review methods: Included studies were peer-reviewed journal articles presenting original research. Given a variety of approaches to palliative care research, a validated systematic review methodology for assessing disparate evidence was used in order to assign scores to different aspects of each study (introduction and aims, method and data, sampling, data analysis, ethics and bias, findings/results, transferability/generalizability, implications and usefulness). Analysis was assisted by abstraction of key details of study into a table. Results: Thirty-four studies were included from eight different countries. The evidence was strongest in relation to pain management, where inadequacies in caregiver knowledge and the importance of education were emphasized. The significance of effective communication and information sharing between patient, caregiver and service provider was also emphasized. The evidence for other caregiver knowledge and information needs, for example in relation to welfare and social support was weaker. There was limited literature on non-cancer conditions and the care-giving information needs of black and minority ethnic populations. Overall, the evidence base was predominantly descriptive and dominated by small-scale studies, limiting generalizability. Conclusions: As palliative care shifts into patients' homes, a more rigorously researched evidence base devoted to understanding caregivers knowledge and information needs is required. Research design needs to move beyond the current focus on dyads to incorporate the complex, three-way interactions between patients, service providers and caregivers in end-of-life care settings. Palliative Medicine (2008); xxx: 1-19
This article investigates the challenges faced by those trying to develop 'culturally competent' palliative care for South Asian cancer patients in Luton, UK. It discusses the findings of a phenomenological study of service providers' attitudes to and experiences of caring for South Asian patients. Ten semi-structured in-depth interviews were carried out with a range of staff who work in home and community-based palliative care settings, including nurses, community liaison personnel and representatives of non-statutory organisations. The authors begin by considering how these service providers construct ideas of cultural difference and how these relate to philosophies of palliative care. They then examine attempts to deal with cultural diversity in everyday practice, focusing in particular on the social context of care in the home. The paper considers the ways in which staff attempt to incorporate the cultural needs of patients, family, kin and community. Rather than criticising current working practices, the authors highlight the complexity of delivering culturally competent services from the perspective of those working directly with patients. In doing so, they contribute to ongoing debates about the development of anti-discriminatory practice in health and social care.
Research suggests that many minority ethnic patients who receive palliative care in the UK are satisfied with the service they are given. However, various studies have revealed that minority ethnic groups' experiences of care are far from perfect. The most significant problem for these patients centres on communication. This article presents some results from an exploratory study, commissioned by Luton Health Action Zone, to explore the role of communication in delivering effective palliative care services to South Asians living in Luton. Overall, it was found that the services provided are, in most cases, valued and seen as being effective. However, as the service providers who were interviewed readily recognized, there were areas where improvements could be made. The main issues were found to be the need to inform South Asian populations of the availability of palliative care services and the need to improve communication between patients and service providers. This article describes the communication problems that service providers and users face. It also identifies possible policy improvements aimed at developing the 'cultural competency' of services.
This article explores the widening ownership of stocks and shares in Great Britain between 1870 and 1935. It demonstrates the extent of that growth and the increasing number of small investors. Women became more important in terms of the number of shareholders and value of holdings. Factors that encouraged this trend included the issue of less risky types of investments, and legal changes relating to married women's property. We examine the 'deepening' importance of stocks and shares for wealth holders, arguing that the growing significance of these kinds of financial assets was as important as the growth in the investor population.e hr_539 157..187 B y 1870, as Jenks noted, England had become a 'stock-and-bondholding aristocracy, measuring income in dividends and wealth in the quotations of the Stock Exchange'. 2 In the remaining decades of the nineteenth century and early years of the twentieth, a striking change took place in the shareholding population. A growing number of individuals in Britain from a widening social spectrum, including the less affluent, began to own stocks and shares. Gentlemen, solicitors, and peers of the realm were joined by 'retailers, professional men, skilled workers and women'. 3 By the late nineteenth century, as Robb has remarked, 'middle and upper-class Britain truly had become a nation of shareholders'. 4 Buoyed by rising real wealth and enticed by the promise of higher returns and lower risk, individuals with relatively modest amounts of personal wealth began to invest in the stock market. In turn, the ability to tap into these swelling reservoirs of individual savings, eased by the development of the banking system and the spread of provincial stock exchanges, allowed British-registered firms, as well as the UK and foreign governments, to mobilize large amounts of capital from across the country. Indeed, the rise to prominence of these investors underpinned not just the expansion of industry at home but the march of British capital abroad.
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