| 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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| 26. |
- Andershed, Birgitta, et al.
(författare)
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The illness trajectory : for patients with cancer who died in two different cultures of care
- 1998
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Ingår i: Omega. - 0030-2228 .- 1541-3764. ; 37:4, s. 251-272
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study has been to retrospectively examine the illness trajectory for a consecutive group of sixty-seven patients with cancer who died at a surgical department or were referred from there to an inpatient hospice ward where they died. Relatives of fifty-two patients were interviewed after the patient's death and all sixty-seven medical records were studied. The data was analyzed with support of Glaser and Strauss' concept of a dying trajectory. A surprising result was that as many as forty-four patients had a short trajectory, and nineteen of these had one month or less between diagnosis and death. Patients at surgical wards followed a faster trajectory and were in a somewhat poorer state of health when compared to patients at the inpatient hospice ward. In the case of trajectories within three months, there is no time to lose, and it is important that caring delay are avoided.
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| 27. |
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| 28. |
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| 29. |
- Andershed, Birgitta
(författare)
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The situation of relatives and their involvement in palliative care
- 2003
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Ingår i: Austral-Asian Journal of Cancer. - 0972-2556. ; 2:2, s. 174-181
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Tidskriftsartikel (refereegranskat)abstract
- This article summarises a number of studies in palliative care with the following primary aims; to describe and obtain increased understanding for the relatives' situation; to analyse the involvement of the relative; to analyse obstacles to and possibilities for the relatives' involvement; and to develop a theoretical framework of understanding concerning their involvement. The main results from the summarised studies show that the relatives' involvement in the patients' care could be classified into three main categories: "to know", "to be" and "to do". The studies show that the relatives' involvement can be described as either involvement in the light or involvement in the dark. Involvement in the light and in the dark illustrates the relatives' understanding of the situation, their possibilities for involvement, ad the attitude of the staff towards the relatives. A pattern which was observed was that those relatives who were involved in the light described having been met with respect, openness, sincerity, confirmation, and connection, while the opposite was the case for those who were involved in the dark. A surprising result was that the time between the patient?s cancer 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. Factors that promoted involvement in the light were professional care based on humanistic values, 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. The result from the studies were summarised in five assumptions which together form a theoretical framework of understanding for the involvement of relatives.
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| 30. |
- Bergdahl, Elisabeth, et al.
(författare)
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Co-creating possibilities for patients in palliative care to reach vital goals - a multiple case study of home-care nursing encounters
- 2013
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Ingår i: Nursing Inquiry. - : Wiley-Blackwell. - 1320-7881 .- 1440-1800. ; 20:4, s. 341-351
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Tidskriftsartikel (refereegranskat)abstract
- The patients home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patients relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.
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| 31. |
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| 32. |
- Bergdahl, Elisabeth, 1962-, et al.
(författare)
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Development of nurses´ abilities to reflect on how to create good caring relationships with patients in palliative care : an action research approach
- 2011
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Ingår i: Nursing Inquiry. - : Wiley. - 1320-7881 .- 1440-1800. ; 18:2, s. 111-122
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Tidskriftsartikel (refereegranskat)abstract
- In this paper we present an action research process aimed at enhancing nurses’ abilities to reflect on how to create good caring relationships with patients in advanced home care. Another aim was to examine the usefulness of an emerging theory, derived from results from a previous study. The request for this project to take place came from an advanced home care unit which had received complaints concerning patients in the palliative phase. The action performed was clinical supervision, structured around abilities that nurses need in order to create good caring relationships. During the action research process 42 narratives were analysed by the participating group. Three different data collections were carried out and analysed with qualitative content analysis in a triangulation procedure. The emerging theory was found to be useful and was also refined. The nurses reported that they felt strengthened and had developed their ability to reflect over good caring relationships. Some changes to practice were carried out by the participating nurses. The result also indicates that action research can be helpful in examining the usefulness of an emerging theory.
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| 33. |
- Bergdahl, Elisabeth, 1962-, et al.
(författare)
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Esthetic abilities : a way to describe abilities of expert nurses in palliative home care
- 2007
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Ingår i: Journal of Clinical Nursing. - : Blackwell Science Ltd.. - 0962-1067 .- 1365-2702. ; 16:4, s. 752-760
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this paper is to focus on the abilities needed to create the caring relation in palliative home care and to find ways to describe these abilities and skills from an esthetic perspective.BACKGROUND: Nurses in Palliative home care have to create a functioning relationship between themselves the patient and the patient's next of kin, this puts special demands on the nurse. A number of abilities, such as creativity, intuition, empathy and self-knowledge are mentioned in literature related to the caring relation. Many nursing theorists have referred to the art and esthetic of nursing when trying to describe these abilities.METHODS: Data were collected using semi-structured interviews with eight expert nurses in palliative home care. The transcribed interviews were analysed using qualitative content analyses.FINDINGS: Three main categories where found: The will to do good, Knowledge and Perceptiveness. Subcategories that can be seen as abilities where found in the main categories knowledge and perceptiveness.CONCLUSIONS: The main categories can be seen as expressions for abilities, personal qualities and skills needed to create the caring relation in palliative home care. We found interesting connections between the three main categories and the concepts of esthetics, ethics and science. We also found that nurses develop in a way, i.e. similar to an artist.RELEVANCE TO CLINICAL PRACTICE: The concepts brought forward in this paper could be used in clinical supervision and education as well as in clinical practice. If nurses think about the three aspects: Knowledge, the will to do good and perceptiveness, the chance for a positive relation between the nurse and the patient, and the patient's next of kin might increase. One could speculate that perceptiveness is a vital ability in order to achieve the expert level of nursing and that this perspective should be taken in consideration when recruiting nurses and in curriculum development.
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| 34. |
- Bergdahl, Elisabeth, 1962-, et al.
(författare)
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The theory of a co-creative process in advanced palliative home care nursing encounters : A qualitative deductive approach over time
- 2019
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Ingår i: Nursing Open. - : Wiley-Blackwell. - 2054-1058. ; 6:1, s. 175-188
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: The aim of this study was to test the theoretical conceptualization of the co-creative process in home care nursing encounters over time.Method and design: This was a multiple case study with a deductive analysis of qualitative data over time, using interviews and observations collected from three cases.Results: The co-creative process was complex and contained main, sub- and micro-processes. Time was important and valuable, giving the patient and relatives space to adjust the process to their own pace. Some processes were worked on more intensively in accordance with the patients' and relatives' needs, and these are considered the main-process. The further developed theory of the co-creative process and its main, sub- and microprocesses can be understood as a concretization of how good nursing care can be performed within caring relationships in the context of advanced palliative home care.
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| 35. |
- Dwyer, Lise-Lotte, et al.
(författare)
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Dignity as experienced by nursing home staff
- 2009
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Ingår i: International Journal of Older People Nursing. - : John Wiley & Sons. - 1748-3735 .- 1748-3743. ; 4:3, s. 185-193
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives. To explore nursing home staff members’ experiences of what dignity in end of life care means to older people and to themselves.Background. Dignity is a concept often used in end-of-life care, but its meaning is rarely clarified.Design. Qualitative descriptive study.Methods. Content analysis. This study is based on interviews with 21 staff members in four different nursing homes in Sweden.Findings. The results show that staff members balanced between providing for the older person’s physical needs while wishing to be able to deliver a ‘deeper’ level of care. The older people’s dignity is presented in the main theme: Feeling trust – Showing respect. The staff members’ dignity is presented in the main theme: Maintaining self-respect – Being shown respect. Threats to dignity are presented in the main theme: conflicts between the ideal and the reality.Conclusions. The results reveal that nursing home staff members deal with a moral conflict between what they are able to deliver and what they would like to provide in the care of older people.Relevance to clinical practice. To promote older people’s dignity, there is a need to take account of staff members’ work situation. Supervision and continuous education could be one way of achieving this.
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| 36. |
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| 37. |
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| 38. |
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| 39. |
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| 40. |
- Edberg, Anna-Karin, et al.
(författare)
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Att vara äldre och närma sig livets slut.
- 2020
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Ingår i: Palliativ vård. - Lund : Studentlitteratur AB. ; :andra upplagan, s. 456
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 41. |
- Ek, Kristina
(författare)
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Att leva med mycket svår kronisk obstruktiv lungsjukdom : ett liv i slowmotion
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis was to describe how people with very severe obstructive pulmonary disease (COPD) experienced their every day lives and created meaning, with focus on end-of-life. A second aim was to describe how death and dying can be viewed from the perspective of relatives to people with COPD. In study I, eight patients were interviewed about how COPD affected their everyday lives. A phenomenological method was used. In study II, four people with COPD who lived alone were interviewed over time, to illuminate how the illness influenced their everyday life and their existential thoughts about life and death. In study III, four couples of whom one partner in each couple had COPD were interviewed several times to illuminate the affect the illness had on the spousal relationship, their self-expressed needs, and their existential thoughts, from the perspective of two people living together. A phenomenological-hermeneutic method was used for the analyses in studies IIand III. Study IV aimed at studying patients’ last six months of life with focuson dying and death, and in this study content analysis was used.The studies (I-IV) revealed that suffering from very severe COPD can be a daily struggle to survive as well as to maintain the self-image. The studies also explicate experiences of a shrinking life space, and questions of meaning were being challenged (I). Study II showed that living alone provided feelings of independency. However the bodily losses reminded the patients’ about death and raised fears about death of being painful, as they did not want to face death alone. For the couples in study III living with COPD meant living in a changed pace with uncertainty, changed intimate relationship and finding new ways of living together. Study IV outlined the trajectory of illness to be irregular and characterized by periods of sudden deterioration, making it difficult to plan for the future. Death was experienced as an unexpected experience and was described by all as peaceful. The results in this thesis have outlined important insight into the existential challenges of living with COPD as experienced by the ill persons themselves and their next of relatives.
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| 42. |
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| 43. |
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| 44. |
- Ek, Kristina, et al.
(författare)
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Shifting life rhythms : couples' stories about living together when one spouse has advanced chronic obstructive pulmonary disease
- 2011
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Ingår i: Journal of Palliative Care. - : Centre de Recherche * Institut Universitaire de Geriatrie de Montreal. - 0825-8597 .- 2369-5293. ; 27:3, s. 189-197
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Tidskriftsartikel (refereegranskat)abstract
- Aim: This study examines couples' experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD).Method: Repeated qulitative interviews with four couples over eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomenological-hermeneutical method was used to interpret the interview text.Findings: One main theme, "living with the disease and one's spouse in a new and changeable life rhythm", emerged from three subthemes: "living with uncertainty", "living in a changed intimate relationship" and "finding new ways of living together". A mutual sense of comanionship between the spouses facilitated their changes of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease.Conclusion: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructing their everyday life.
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| 45. |
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| 46. |
- Ek, Kristina, et al.
(författare)
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Struggling to retain living space : patients' stories about living with advanced chronic obstructive pulmonary disease
- 2011
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Ingår i: Journal of Advanced Nursing. - : Wiley-Blackwell. - 0309-2402 .- 1365-2648. ; 67:7, s. 1480-1490
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Tidskriftsartikel (refereegranskat)abstract
- Aim: This paper is a report of a study of the experience of living with advanced chronic obstructive pulmonary disease and long-term oxygen therapy when living alone.Background: Chronic obstructive pulmonary disease affects an increasing number of people. Breathlessness, fatigue and dejection are common symptoms during the last years of life.Method: Repeated qualitative interviews with four participants were conducted over an 8-month period in 2008. The data comprised 17 interviews, 15 telephone conversations and various field notes. A phenomenological hermeneutical method was used to interpret the text.Findings: The analysis resulted in two main themes and five sub-themes. The first main theme, Being subordinated to the sick body, implies that the body, assistive devices and entrusting oneself to the hands of others can both extend and restrict the living space. The second main theme, Protecting significant values of identity, encompasses both the struggle to maintain self-image and the awareness of one's own death.Conclusion: Living alone with advanced chronic obstructive pulmonary disease is a challenging and complex phenomenon. The everyday life was characterized by a struggle to keep autonomy during a time of increasing dependency and need for help. A person-centred nursing care, built upon peoples' own experiences, may be one way to promote identity and dignity in patients even when they are close to death.
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| 47. |
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| 48. |
- Ek, Kristina, et al.
(författare)
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“The unpredictable death” : The last year of life for patients with advanced COPD: Relatives’ stories
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:5, s. 1213-1222
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.Method: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.Result: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.Significance of Results: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.
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| 49. |
- Elmberger, Eva, et al.
(författare)
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Being a mother with cancer : achieving a sense of balance in the transition process
- 2008
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 31:1, s. 58-66
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Tidskriftsartikel (refereegranskat)abstract
- For women with cancer and with children living at home, the demands of being a good mother while undergoing treatments and recovering from illness have been described as a difficult life process. The aim of this study was to further examine the transition process with focus on women's experience of their responsibility toward their children. Interviews from 2 previous studies investigating the transition process of women with cancer were gathered and were subjected to a qualitative secondary analysis, an analytic expansion of the transition process. The 3 phases in the transition process were used in an interpretive description: ending an earlier life situation, in-between, and new beginning. A main theme that integrated these phases was constructed: "the desire to manage ones responsibility as a parent," within the context of mothering. The women expressed moral concern about not being able to function as "good" mothers yet attempted to find a balance between experiences of exhaustion and other experiences that made it difficult to maintain their responsibility as parents. All of the women included in this study expressed the need for professional support to help them endure treatment procedures as well as to sustain their moral responsibility as good mothers.
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| 50. |
- Eriksson, Monika, et al.
(författare)
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Care dependence : a struggle toward moments of respite
- 2008
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Ingår i: Clinical Nursing Research. - : SAGE Publications. - 1054-7738 .- 1552-3799. ; 17:3, s. 220-236
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to describe people's experiences of being dependent on others for care in their final stage of life, as well as what they felt made their experience of being dependent easier or more difficult. The phenomenological-hermeneutical method was chosen, where data collection consisted of open-ended interviews with nine people undergoing palliative care at a hospice unit or at home. The meaning of being care dependent is described via the following themes: changed relationship with oneself and with others, striving to adapt oneself to the situation, obstacles, and opportunities along the way while dependent. The result is described as an effort, a journey from independence to moments where it was possible to rest and recuperate while struggling with care dependency. Nursing staff require knowledge and understanding of experiences with care dependency to make life easier for people during increasing dependency in the final stage of life.
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