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Background Being involved in the care of a loved one is a desire of many next of kin. However, according to several studies of the perceptions of nursing home staff, the involvement of next of kin is not an obvious part of care. To be able to involve next of kin in care at nursing homes, the perceptions of what participation means are an important piece of knowledge. The aim of this study was therefore to describe variations in next of kins perceptions of the meaning of participation in the care of older persons living in nursing homes. Methods Eighteen next of kin of older persons living in ten nursing homes in Sweden were recruited for interviews. The study design was based on a phenomenographic approach, focusing on the qualitatively different ways in which a person perceives, experiences or conceptualises a phenomenon or certain aspect of reality. Results Five categories emerged from analysis of the interviews, representing the next of kins perceptions of the meaning of participation in the care of older persons in nursing homes: be present; communicate; monitor; do practical tasks; and to represent. The next of kin expressed meanings that belonged to more than one category, and the categories were interdependent. Conclusions Our results indicate that there are several meanings of next of kins perceptions of participation at nursing homes. Nursing home staffs knowledge of these perceptions is important to enable next of kin to participate according to their own preferences. Funding Agencies|Swedish Research Council; Vardal Foundation; Greta and Johan Kock Foundation; Ragnhild and Einar Lundstrom foundation; Ribbingska Memorial Foundation

Background Despite increased attention and knowledge in palliative care, there is still confusion concerning how to interpret the concept of palliative care and implement it in practice. This can result in difficulties for healthcare professionals in identifying patients whom would benefit from palliative care, which, in turn, could lead to a delay in meeting patients' needs. Aim To explore healthcare professionals' perceptions of palliative care. Method Data were collected through twelve interprofessional focus group interviews in community care and hospital wards in south Sweden (n = 74). All interviews were analysed with latent content analysis. Results Three domains were revealed: first, a blurred conceptual understanding as participants described palliative care using synonyms, diagnoses, phases, natural care and holism; second, a challenge to communicate transitions concerned the importance of how and when the transition to palliative care was communicated and documented; finally, a need for interprofessional collaboration was described as well as the consequences for severely ill persons, relatives and healthcare professionals when it was not established. Conclusion The perceptions about how to interpret palliative care differed as well as when palliative care should be offered and decided, which might have practical consequences. How long a person has left to live is of great significance for decision-making, caregiving and preparation in palliative care. The challenge is to use interprofessional communication to promote understanding and collaborate across varied care levels. Integrating palliative care across diverse care levels could be one way to reduce the ambiguity of palliative care.

Perceptions of risks in decision making for home healthcare were examined. Twenty home healthcare professionals were interviewed. Content analysis yielded one theme (management of known and unpredictable risks) and four categories. Healthcare professionals had to handle both known and unpredictable risks in daily work in patients' homes concerning communication challenges, a fragmented organization at several levels, risky medication management, and balancing respect for patient autonomy and involvement in care against risk taking. Priority must be given to creating safer care in this setting.

Background: The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care. Methods/design: A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations. Discussion: The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the worlds ageing population. The data collection is completed and the analysis is ongoing. Funding Agencies|Swedish Research Council; Vardal Foundation; Faculty of Medicine, Lund University; City of Lund; Faculty of Health and Life Sciences, Linnaeus University; Palliative Care Institute at Lund University and Region Skane; Greta and Johan Kock Foundation; Ribbingska Memorial Foundation

Nursing homes are often places where older persons &ldquo, come to die.&rdquo, Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses&rsquo, experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents&rsquo, reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents&rsquo, contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

Most of the care in nursing homes is palliative in nature, as it is the oldest and the frailest people who live in nursing homes. The aim of this study was to explore next of kin's experiences of participating in the care of older persons at nursing homes. A qualitative design was used, based on semi-structured interviews with 40 next of kin, and analyzed using qualitative content analysis. An overarching theme emerged, a balancing act consisting of three categories: (1) visiting the nursing home; (2) building and maintaining relationships; and (3) gathering and conveying information. The next of kin have to balance their own responsibility for the older person's wellbeing by taking part in their care and their need to leave the responsibility to the staff due to critical health conditions. The next of kin wanted to participate in care meetings and conversations, not only in practical issues. The findings indicate the need to improve the next of kin's participation in the care as an equal partner. Increased knowledge about palliative care and decision-making of limiting life-prolonging treatment may lead to a higher quality of care.

Background: Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals ...

Objective:To describe enrolled nurses' (ENs') experiences of working in a sitting service for dying patients at home (SSH).Method:The ENs who participated in this study had permanent jobs in community care/ primary care, but were also employed part time in a special home-sitting service organization in a municipality in the south of Sweden. Data were collected by four focus group interviews with 17 enrolled nurses. Qualitative content analysis was used to analyze the data.Results:Care-giving in SSH was a balancing act between a sense of security and a feeling of vulnerability. Feeling secure and valued and that one is developing both professionally and personally, stemmed from working in partnership, whereas a feeling of vulnerability was associated with managing closeness and distance, being a mediator, having responsibility and feeling guilty, feeling hindered from doing good, facing loneliness, and affecting private lives.Significance of results:SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organization were not an option for dying patients and their families, the pressure on the healthcare would be dramatically increased.

The aim of the study was to describe nurses' experiences in caring for gravely ill and dying patients outside special palliative care settings. Tape-recorded qualitative interviews were conducted with a total of nine nurses in primary home care, community care and hospitals. The interviews were analysed according to phenomenological methodology, which resulted in the three common structures: ambition and dedication, everyday encounters, and satisfaction/dissatisfaction. In the 'everyday encounters' structure, the following key constituents emerged: responsibility, cooperation, experience and knowledge, feelings, and time and resources. The results describe the nurses' high ambitions to give dying patients and their relatives high-quality care. Despite this, they experienced greater or lesser degrees of dissatisfaction because of insufficient cooperation, support, time and resources. They experienced satisfaction through contact with patients and relatives, functioning collegial cooperation, and the knowledge, experience and personal growth the care had given them. The results indicate that nurses need the resources such as time, improved methods of communication and cooperation as well as more support in order to give quality palliative care and achieve satisfaction with the outcome. The need for discussion about the conditions for giving palliative care outside the hospices and other special palliative care settings is also elucidated.

Objective:To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.Methods:Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregationResults:Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.Significance of the research:Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals with chronic diseases. An intention for palliative care in Sweden is that all persons in the final stage of life, irrespective of age, domicile, diagnosis, and care place shall have access to palliative care on equal terms. One way to support these persons in final stage of life and their relatives is to offer sitting service.To describe individuals who were identified and documented as being in a palliative phase in a Swedish municipality, with respect to demographics, use of a sitting service, continuity of care in the last month of life and the place of death. A second aim was to describe and compare the groups who received/did not receive sitting services related to the aforementioned variables.Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods.Among individuals deceased during 2007, 51% were identified and documented as being in palliative phase. The majority was older people (mean 83 years) with a noncancer diagnosis (58%). Twenty-eight individuals (16%) had received a sitting service between 8 and 249 hours (one extreme value = 2211). It is indicated that sitting service significantly increased the possibility of dying at home (p = 0.00004), but did not affect how often the place of care changed during the last month of life.A small sample from a Swedish context must be considered.These results can be related to an awareness in the municipality that led to adopting the concept of palliative care as not only for those with a cancer diagnosis.