| 1. |
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| 2. |
- Wallerstedt, Birgitta, et al.
(författare)
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Caring for dying patients outside special palliative care settings : experiences from a nursing perspective
- 2007
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 21:1, s. 32-40
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Wallerstedt, Birgitta, et al.
(författare)
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Family members´caregiving situation in palliative home care when sitting service is received : the understanding of multiple realities
- 2014
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Ingår i: BMJ Supportive & Palliative Care. - : Cambridge University Press. - 2045-435X .- 2045-4368. ; 12:6, s. 425-437
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Wallerstedt, Birgitta, 1952-, et al.
(författare)
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Family members' caregiving situations in palliative home care when sitting service is received : the understanding of multiple realities
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- AbstractIn Sweden, an increasing number of older people, in need of palliative care, are living in privatehomes with help from health professionals, but relatives are also expected to participate ascaregivers. The aim of this study was to deepen the understanding of multiple realities of familymembers’ caregiving situations, when the private home is the place for care,dying, and sittingservice. Seven relatives to a deceased family member were interviewed twice. Data were analyzed bydirect interpretation and categorical aggregation. The result showed various patterns of becoming acaregiver. Important factors for coping with the situation were their needs of support, the possibilityto prepare for death, the length of illness trajectory and experiences of losses and grief. Sittingservice was experienced as supportive when they had possibility to hand over care responsibilities,but as non-supportive when expected help not was received.Key words: caregiving situations, multiple realities, family members, relatives, sitting service,palliative home care
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| 5. |
- Wallerstedt, Birgitta, 1952-, et al.
(författare)
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Identification and documentation of persons being in palliative phase regardless of age, diagnosis and place of care, and their use of sitting service at the end of life
- 2012
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Ingår i: Scandinavian Journal of Caring Sciences. - Hoboken, USA : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 26:3, s. 561-568
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Tidskriftsartikel (refereegranskat)abstract
- 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 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.Aims: 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.Method: Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods.Findings: 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.Limitation: A small sample from a Swedish context must be considered.Conclusion: 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.
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| 6. |
- Wallerstedt, Birgitta, et al.
(författare)
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Sharing living and dying : A balancing act between vulnerability and a sense of security. Enrolled nurses’ experiences of working in the sitting service for dying patients at homesafety.
- 2011
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Ingår i: Palliative & Supportive Care. - Cambridge : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 9:3, s. 295-303
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Wallerstedt, Birgitta, 1952-
(författare)
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Utmaningar, utsatthet och stöd i palliativ vård utanför specialistenheter
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to study palliative end-of-life care outside specialist palliative care settings, from an organizational perspective and from professionals’ and relatives’ experiences. In Study I 174 individuals were identified retrospectively from nursing records and palliative care identification forms as being in a palliative phase. Data were analyzed with descriptive and analytic statistical methods. In Study II a total of nine nurses working in primary home care, community care, and hospitals were interviewed. Phenomenological methodology was used to analyze data. In Study III 17 enrolled nurses, who worked in community or primary care and in a sitting service organization, participated in four focus group interviews. Data were analyzed with qualitative content analysis. In Study IV seven relatives from four families were interviewed twice. They had each cared in the private home for a dying family member who had received sitting service. Direct interpretation and categorical aggregation were used to analyze data. The results highlight challenges in palliative care, vulnerable situations, and a need of support (I–IV). Individuals’ needs for both palliative care and sitting service were identified, including those of a smaller part of the population who actually received the sitting service. (I). Registered nurses’ responsibilities included care at the same time for individuals in both palliative and curative phases. This created vulnerable situations for the nurses, since their ambitions concerning the care did not correspond to available resources (II). The enrolled nurses’ task was to manage ongoing life and dying in different care settings, to meet individual needs and still provide equivalent care. Despite experiences of vulnerable situations, they felt safe (III). Relatives experienced care situations differently, related to differences in families, the illness trajectory, the need for support, and the support offered. Without sufficient support, vulnerable situations occurred, which made the relatives feel insecure (IV). Thus, care situations in palliative end-of-life care can be experienced in different ways, with different levels of vulnerability. One implication of the research might be to suggest that professional caregivers, to supplement the relatives’ own resources with support tailored to the individual’s and the family’s needs
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| 8. |
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| 9. |
- Andershed, Birgitta, et al.
(författare)
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An isolated involvement in mental health care : Experiences of parents of young adults.
- 2017
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 26:7-8, s. 1053-1065
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this study was to explore parents' involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of "Involvement in the light - involvement in the dark" in the context of mental health care.BACKGROUND: Mental illness has increased among young people in high-income countries and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken-for-granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility.DESIGN AND METHODS: A secondary descriptive design with a deductive content analysis was used. Ten parents who have a son or daughter with long-term mental illness (aged 18 - 25) were interviewed. The deductive analysis was based on the caring theory of "Involvement in the light - Involvement in the dark".RESULTS: The results are described using the following concepts in the theory: "Knowing", "Doing", "Being" and "Attitude of the health professionals". The result are to a great extent consistent with the "Involvement in the dark" metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. This article is protected by copyright. All rights reserved.
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| 10. |
- Andershed, Birgitta
(författare)
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Att vara nära anhörig i livets slut : Delaktighet i ljuset - delaktighet i mörkret
- 1998
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aims of the present dissertation were: 1. To describe how the establishment of an inpatient hospice ward affected dying cancer patients' utilisation of care at a Medical Centre Hospital; 2. To analyse the involvement of the relative in the care of gravely ill cancer patients in different care cultures; 3. To analyse obstacles to and possibilities for relatives' involvement: 4. To develop a theoretical framework of understanding concerning the involvement of relatives. For the first aim, data was collected via register studies. The basic research design for the other aims was the hermeneutic method.The results show that during the first three years 315 patients died at the newly opened hospice ward. The year before the ward opened 82% of the cancer patients died in acute care compared with 59% during the third year of the hospice ward.The involvement of relatives in the patients' care was categorised into three main categories: "to know", " to be" and "to do". The studies show that the involvement can be described either as involvement in the light or involvement in the dark. Involvement in the light and in the dark illustrates relatives' understanding of the situation, their possibilities for involvement, and the attitude of the staff toward the relatives. Factors that promoted involvement in the light were a humanistic attitude of the staff, a stronger sense of coherence of relatives, an appropriate course of illness, and other available resources such as other relatives and one's own health.A surprising result was that the time between diagnosis and death was three months or less for 49% of 67 patients. In those cases where the course of illness was short there was no time to lose, and it was important that caring delays were avoided.The results from the substudies were summarised in five statements, which together form a theoretical framework of understanding for the involvement of relatives.
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| 11. |
- Andershed, Birgitta, et al.
(författare)
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Being a close relative of a dying person : development of the concepts "involvement in the light and in the dark"
- 2000
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Ingår i: Cancer Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 0162-220X .- 1538-9804. ; 23:2, s. 151-159
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Tidskriftsartikel (refereegranskat)abstract
- The current study is based on an earlier article in which relatives' involvement in care was described as involvement in the light or involvement in the dark. Involvement in the light was characterized as the relative being well informed and experiencing a meaningful involvement. The relatives involved in the dark felt uninformed, that they were groping around in the dark when they tried to support the patient. The present study analyzed further the meaning of involvement in the light and involvement in the dark, and investigated whether two different care cultures, the relationship with the staff, and a rapid course of illness influence the involvement of relatives. Relatives of 52 patients who died, 30 at a surgical department and 22 in a hospice ward, were interviewed after the patients' deaths. All the relatives of the patients in the hospice ward and 13 of those in the surgical department were judged to be involved in the light. Of the relatives judged to be involved in the dark, 12 either had a sick relative with a rapid course of illness or felt that the sick relative had died unexpectedly. A pattern was clearly observed: The relatives involved in the light described being met with respect, openness, sincerity, confirmation, and connection, whereas the opposite was experienced by those involved in the dark.
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| 12. |
- Andershed, Birgitta, et al.
(författare)
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Development of a theoretical framework describing relatives' involvement in palliative care
- 2001
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 34:4, s. 554-562
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:The present study is based on four earlier studies in which the authors classified the relative's involvement in palliative care into different categories and described the involvement as "involvement in the light" or "involvement in the dark".AIM:The aim of the study was to develop a theoretical framework concerning the involvement of relatives based on an in-depth analysis of the results of the four earlier studies.METHOD:Walker & Avant's (1995) strategies for theory construction were used for development of the framework. A number of different concepts, assumptions and statements about relatives' involvement were penetrated in an in-depth analysis.RESULTS:From the concepts two theoretical "blocks" of the relatives' involvement were developed and these constitute the foundation for the framework. One is based on concrete descriptions of the concepts "to know", "to be" and "to do". The other describes how the concepts of "involvement in the light" and "involvement in the dark" differ. Factors that promoted involvement in the light were professional care based on humanistic values, a stronger sense of coherence on the part of relatives, an appropriate illness trajectory, and other available resources. The opposite was the case for those who were involved in the dark. Five assumptions successively developed which together form the theoretical framework.CONCLUSIONS:An important conclusion that can be of importance in palliative care is that the manner in which the staff act toward the patient and relatives influence relatives' possibilities for involvement, patients' possibilities for an appropriate death, and the possibilities the staff have to give good care.
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| 13. |
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| 14. |
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| 15. |
- Andershed, Birgitta, et al.
(författare)
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Involvement of relatives in care of the dying in different care cultures : development of a theoretical understanding
- 1999
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Ingår i: Nursing Science Quarterly. - : SAGE Publications. - 0894-3184 .- 1552-7409. ; 12:1, s. 45-51
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Tidskriftsartikel (refereegranskat)abstract
- A prerequisite for the staff to be able to guide relatives through the dying trajectory is that the staff members know what the relative wants and can do. The aim of this study was threefold: (a) to identify and categorize family members' involvement in the care of a dying relative, (b) to develop a theoretical understanding of their involvement, and (c) to discuss the congruence or incongruence between the empirical results and key concepts in Swanson's and Watson's theories of caring. The results show that the relatives' involvement could be classified into three categories: to know, to be, and to do. Good correspondence was found between these three categories and key concepts in Swanson's and Watson's theories of caring.
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| 16. |
- Andershed, Birgitta, et al.
(författare)
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Involvement of relatives in the care of the dying in different care cultures : involvement in the dark or in the light?
- 1998
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Ingår i: Cancer Nursing. - : Ovid Technologies (Wolters Kluwer Health). - 0162-220X .- 1538-9804. ; 21:2, s. 106-111
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this prospective study was to increase existing knowledge about the involvement of relatives in care of the dying and to shed light on the relatives' sense of coherence. Six relatives were followed via qualitative interviews during the patients' final period of life and after their deaths. The patients died in different forms of care: surgical department, nursing home, inpatient hospice ward, and at home. What the relatives had in common was that they had, in different ways, followed the patient from the first symptoms, through different forms of care, up until death. Some participated very actively in the care. Relatives' involvement in care can be described as involvement in the light or involvement in the dark. Involvement in the light is based on a trusting relationship between the family and the staff. Involvement in the dark is based on insufficient interplay and collaboration, in which the relatives are not seen or acknowledged by the staff, but instead must grope around in the dark when they try to support the patient. Rapid course of illness can be a risk factor for involvement in the dark. It seems that the relatives' sense of coherence was an important factor enabling them to be involved in the light. Humanistic care can constitute a buffer, thereby increasing the possibilities for relatives to be involved in the light.
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| 17. |
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| 18. |
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| 19. |
- Andershed, Birgitta, et al.
(författare)
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Next of kin's feelings of guilt and shame in end-of-life care
- 2007
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Ingår i: Contemporary nurse : a journal for the Australian nursing profession. - : Informa UK Limited. - 1037-6178 .- 1839-3535. ; 27:1, s. 61-72
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Tidskriftsartikel (refereegranskat)abstract
- In this study the aim was to explore and describe next of kin's feelings of guilt and shame in end-of-life care via secondary analysis of 47 qualitative interviews. In the analysis categories and subcategories emerged which conveyed how the next of kin experienced guilt; not having done or talked enough, being absent at important events or making errors of judgement. Categories conveying feelings of shame were situations where the next of kin felt inferior, was ashamed on behalf of the dying person and when family conflicts became apparent. Receiving help and support in order to make the remaining period as pleasant as possible can facilitate the next of kin's sense of having fulfilled their duties and responsibilities and therein reduce feelings of guilt and shame. It is apparent that these feelings should be taken into account and the next of kin should receive support to increase their well-being during the remaining time in end-of-life care and the grieving period.
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| 20. |
- Andershed, Birgitta
(författare)
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Närståendes behov i palliativ vård
- 2004
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Ingår i: Närståendes behov. - Stockholm : Svensk sjuksköterskeförening. - 9185060097 ; , s. 103-115
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Bokkapitel (populärvet., debatt m.m.)
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| 21. |
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| 22. |
- Andershed, Birgitta, et al.
(författare)
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Patterns of care for patients with cancer before and after the establishment of a hospice ward
- 1997
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 11:1, s. 42-50
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Tidskriftsartikel (refereegranskat)abstract
- A majority of people die in acute hospital care, in a culture of quickness primary aimed at curing. There are indications that hospice care in various forms will spread during the present decade in Sweden. The hospice philosophy contributes to a culture of slowness, where the patient is not only allowed but is encouraged to live at his own pace. As a first step in establishing for whom hospice inpatient care is the best alternative, patient flow to a newly started hospice ward was studied. All patients (n = 1464) who died at the Medical Centre Hospital with a primary diagnosis of cancer during the period of study were compared regarding place of death, diagnosis, gender, age and length of the last period of care. The year before the ward was established, 82% of patients died in acute hospital care compared with 59% during the hospice ward's third year of operation. A total of 315 patients (22%) died in the hospice ward during the study period. The percentage of these patients over the age of 80 was significantly higher (p = 0.0001), and they also had a longer continuous final period of care. More women (57%) than men (43%) were cared for at the hospice ward. The hospice ward has in this way influenced the pattern of care in the hospital.
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| 23. |
- Andershed, Birgitta
(författare)
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Relatives in end-of-life care--part 1 : a systematic review of the literature the five last years, January 1999-February 2004
- 2006
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 15:9, s. 1158-1169
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Forskningsöversikt (refereegranskat)abstract
- AIM:To review systematically research conducted during the past five years focusing on the relatives' situation and needs in end-of-life care.BACKGROUND AND AIM:That relatives make a large contribution in the care of the dying is well-known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out.METHODS:A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals.RESULTS:The results were categorized in two main themes with several subthemes: (1) being a close relative--the situation: (i) exposed position--new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative--needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance.CONCLUSION:More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies.RELEVANCE TO CLINICAL PRACTICE:Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives' involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide 'care in the light'.
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| 24. |
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| 25. |
- Andershed, Birgitta, et al.
(författare)
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Review of research related to Kristen Swanson's middle-range theory of caring
- 2009
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 23:3, s. 598-610
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Forskningsöversikt (refereegranskat)abstract
- The aim of this study was to identify and describe how Kristen Swanson's middle-range theory has been used in nursing practice/research presented in international journals. A total of 120 studies were included in the review and 23 were analysed further. An overview of the studies is presented, followed by four categories of how the theory has been used: referring to the theory (97 papers), applications of the theory to practice/research and/or theoretical discussions (nine papers), relating findings to and/or validation of the theory (eight papers), and development of measurements from and/or testing of the theory (six papers). The use of the theory and conclusions of the studies related to criteria for evaluation of theories were discussed.
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