Consensus on treatment for residents in long-term care facilities: perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries.

BACKGROUND: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. METHODS: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. RESULTS: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). CONCLUSIONS: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.

A qualitative exploration of the collaborative working between palliative care and geriatric medicine: Barriers and facilitators from a European perspective.

BACKGROUND: With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective. METHODS: Four semi-structured group interviews were undertaken with 32 participants from 18 countries worldwide. Participants were both clinicians (geriatricians, GPs, palliative care specialists) and academic researchers. The interviews were transcribed and independent analyses performed by two researchers who then reached consensus. RESULTS: Limited knowledge and understanding of what the other discipline offers, a lack of common practice and a lack of communication between disciplines and settings were considered as barriers for collaboration between palliative care and geriatric medicine. Multidisciplinary team working, integration, strong leadership and recognition of both disciplines as specialties were considered as facilitators of collaborative working. Whilst there are instances of close clinical working between disciplines, examples of strategic collaboration in education and policy were more limited. CONCLUSIONS: Improving knowledge about its principles and acquainting basic palliative care skills appears mandatory for geriatricians and other health care professionals. In addition, establishing more academic chairs is seen as a priority in order to develop more education and development at the intersection of palliative care and geriatric medicine.

Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study.

OBJECTIVE: To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. BACKGROUND: Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. DESIGN: Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. SAMPLE: Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. FINDINGS: This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. CONCLUSIONS: This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.

Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study.

OBJECTIVE: There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. DESIGN: Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. SETTING: The UK health and social care research community. PARTICIPANTS: Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. RESULTS: We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. CONCLUSIONS: Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for 'best practice' standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.

Review: what evidence is there about the specific environmental needs of older people who are near the end of life and are cared for in hospices or similar institutions? A literature review.

Relatively little is known about the type of physical environment which is needed and preferred by patients aged 65 and over, with a prognosis of 1 year or less, who are receiving care in hospitals, care homes and hospices, and their families and staff. A narrative literature review was conducted to identify and analyse evidence on this issue, with twenty-nine papers meeting the inclusion criteria. The patients were found to have a wide range of views on their environment, but there was some variation between the views of patients and those of their families and staff. Four main themes emerged: the physical environment should be 'homely'; it should support patients' need for social interaction and privacy; it should support the caring activities of staff, family members and patients; and it should allow opportunities for spiritual expression. It is evident that the physical environment contributes significantly to the quality of life of older people with a life-limiting illness, and there is a need for more research in this area. Regular assessment of patients' environmental needs should form part of care planning.

Advance care planning in care homes for older people: an English perspective.

Advance care planning (ACP) as a process of discussing and recording wishes for future care and treatment is increasingly being promoted and discussed in the UK, reflecting recent changes in legislation. This study describes current ACP practice in care homes for older people drawing on data from a questionnaire survey (n = 213) of, and interviews (n = 15) with, care home managers. Whilst consultation about general care is taking place in the majority of homes surveyed using both formal and informal processes, the number of residents that have completed any ACP processes varies. Managers face intrinsic and extrinsic challenges related to the ascertaining of, and the implementing of wishes as they address ACP in the care home context. Until these wider contextual factors are addressed it will be difficult for staff in care homes to effectively undertake and implement ACP in care homes.

Palliative care in long-term care: a system in change.

The provision of palliative care for older people within the next decade will need to be substantially different to that provided today. In long-term care settings the achievement of quality palliative care will require attention to all levels of the health and social care system, in both its formal and informal manifestations. We suggest that long-term care facilities will become the hospices of the future, caring for older people with chronic conditions with a long trajectory to death, the most common being dementia. We see this progression as inevitable and appropriate if the right support is provided. We discuss the impact that transferability and sustainability has had on the present provision of palliative care for older people and how that may affect the future. Four forces which are important factors in public policy; leadership, a culture that supports learning throughout the care process, an emphasis on effective team development and the use of information technologies for quality activities are used as a framework for our vision of social planning. We then go on to discuss the impact of costs, workforce, service planning and public awareness as vital areas where progress needs to be carefully tackled. We suggest some likely poor outcomes if this planning does not occur, but indicate that if planning and implementation is effective then services can provide the kind of care the baby boomer generation seeks.

Palliative care and nursing homes: where next?

Specialist palliative care providers are seeking to transfer the principles of palliative care to more general care settings in order to meet the needs of people with diseases other than cancer. To prepare nursing home staff to provide palliative care increasing numbers of educational initiatives are now being offered. This paper explores some of the assumptions that underpin these initiatives. Recommendations are made that recognize the expertise already held within nursing homes and propose a collaborative approach to promote the appropriate integration of palliative care with nursing home practice.

Evaluating a palliative care education project in nursing homes.

This article reports on an evaluation of a 2-year palliative care education project for nursing home staff. The aim of the project was to provide education for all levels of nursing home staff so that the care of dying residents could be improved. In order to ascertain the outcomes of the initiative two approaches to data collection were adopted. Case studies of four participating nursing homes were undertaken, involving a period of participant observation and interviews with staff members. A postal survey of the participating nursing homes and non-participating nursing homes from the same geographical region was also carried out. The impact of the project is described, identifying how the care of residents and their relatives was affected, the differing impact on the participating staff groups and the degree to which the organizational practices of the nursing homes changed. Although the project influenced course members' practice, the provision of courses such as these was recognized to be insufficient to ensure widespread organizational changes. Questions regarding the effectiveness of education as an agent of organizational change were raised throughout the project and the evaluation.

The place of metaphor and language in exploring nurses' emotional work.

An understanding of the importance of language as a symbolic artefact, particularly with reference to metaphor, has been little addressed within the nursing literature. Consequently, the potential richness of people's accounts may be missed. Data from a study which explored the nature of hospice work and nurses' experiences of professional and personal bereavements are used to illustrate the different understanding which an exploration of metaphor can bring to research. Meanings of metaphor and its role in language are initially presented before drawing on data concerned with the emotional aspects of hospice work. Root metaphors of emotion are identified and examples from nurses' accounts indicate how nurses draw on these metaphors to articulate their experiences. The strategies nurses employ to continue working within the hospice culture are identified both practically in their work and metaphorically in the language they use.

Tuberculosis: spatial and demographic incidence in Bradford, 1980-2.

Between 1980 and 1982 the incidence of tuberculosis in Bradford Health Authority was approximately 20 times higher among the New Commonwealth and Pakistani population than the rest of the population. It was also possible to see a clustering of cases within this time period, spatially and demographically--in certain age groups and by sex. The difference between the two populations was not due to race but rather reflects the socioeconomic position that the New Commonwealth and Pakistani population has within Bradford as a whole. The incidence of non-Asian tuberculosis rose in 1982 due to an outbreak among unvaccinated young adults. Much still needs to be done to eradicate the environmental conditions within which the tubercle bacillus thrives as well as to educate the population at risk.