Tag Archives: research

Priorities in Palliative and End-of-Life Care: Public Consultation

The ‘Palliative and End of Life Care Priority Setting Partnership’ has initiated a public consultation on research priorities. Service users, families, carers and health professionals are invited to participate in a brief survey identifying the issues they feel need most attention from research and funders.

The survey can be accessed here: http://www.palliativecarepsp.org.uk/

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Research Associate: Advance Care Planning Intervention

The University of Lancaster is seeking to recruit a Research Associate to work on a multi-centre  advance care planning randomised control trial in six European countries. The post will be based in The International Observatory on End of Life Care within the Division of Health Research.

 For more information click here

Study Manager/Research Fellow: Dementia and Imagination Project (Bangor University, Wales)

Bangor University is participating in a three-year project on how visual arts can contribute to the health and well-being of people with dementia. The multi-disciplinary research will explore how visual arts change, sustain and catalyse community cultures, beliefs, attitudes and behaviours to create dementia friendly communities.

The project is currently looking for a Study Manager/Research Fellow with experience of multi-centre research studies, project management and team leadership, and quantitative, qualitative and observational research methods.

The closing date for applications is June 13th 2013. For more information click here.

What are the priorities for developing culturally appropriate palliative and end-of-life care for older people?

A research team from New Zealand has recently published an article on the priorities for developing culturally appropriate palliative and end-of-life care for older people.

Bellamy and Gott (2013) What are the priorities for developing culturally appropriate palliative and end-of-life care for older people? The views of healthcare staff working in New Zealand. Health and Social Care in the Community. 21(1), 26–34

The abstract is reproduced below and the full article can be accessed here.

Abstract

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, PacificIsland and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, PacificIsland and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide ‘hands-on’ care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in ‘hands-on’ palliative care and decision-making requires care staff to relinquish their role as ‘expert provider’. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision.

Research Associate – University of Cambridge

The Institute of Public Health, University of Cambridge,  is advertising a research position in their End of Life Care Group. Candidates should have experience of qualitative and quantitative research in Health Services and/or End of Life Care.

Application deadline: 15 October 2012

For more information click here.

Culture Is a Priority for Research in End-of-Life Care in Europe: A Research Agenda

We are pleased to announce that the Journal of Pain and Symptom Management has published the PRISMA project’s research agenda for culture and end-of-life care as a special article.

The abstract can be found below and the full article can be accessed here.

Abstract

Context

Culture has a profound influence on our understanding of what is appropriate care for patients at the end of life (EoL), but the evidence base is largely nonexistent.

Objectives

An international workshop was organized to compile a research agenda for cultural issues in EoL research, and assess challenges and implications of the integration of the culture concept in different contexts.

Methods

Participant experts were identified from the expert network established through an Internet-based call for expertise on culture and EoL care and from meetings. The workshop comprised presentations of research priorities from country and disciplinary perspectives, and group discussions. Analysis used all data gathered in the workshop and applied standard qualitative techniques.

Results

Thirty experts participated in the workshop and identified the following priorities for cross-cultural research: 1) clarifying the concepts of culture and cultural competence; 2) defining EoL in a context of social and cultural diversity, with a focus on concepts of EoL care and bioethics, experiences of receiving and giving EoL care, and care practices in different settings; and 3) developing appropriate methodologies and outcome measurements that address diversity.

Conclusion

This first pan-European meeting compiled a research agenda, identifying key areas for future research focusing on culture, diversity, and their operationalization. This requires international and multidisciplinary collaboration, which is necessary in the current efforts to synthesize best practices in EoL care.

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

A recently published article from the PRISMA project provides a general overview of cultural issues in end of life care in seven European countries.

The abstract can be found below or the full article can be accessed here.

Aim

Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries.

Methods

We scoped the literature for Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes.

Results

A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities.

Conclusion

This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.