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Utmaningar, utsatthet och stöd i palliativ vård utanför specialistenheter
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
2012 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2012. , 88 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 34
Keyword [en]
vulnerability, support, challenges, palliative care, relatives, registered nurses, enrolled nurses, end-of-life care
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-21411ISBN: 978-91-7668-860-1 (print)OAI: oai:DiVA.org:oru-21411DiVA: diva2:485886
Public defence
2012-03-16, Örebro universitet, Hörsal P2, Prismahuset, Fakultetsgatan 1, Örebro, 13:00
Opponent
Supervisors
Available from: 2012-01-30 Created: 2012-01-30 Last updated: 2017-10-17Bibliographically approved
List of papers
1. 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
Open this publication in new window or tab >>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 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 3, 561-568 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Hoboken, USA: Wiley-Blackwell, 2012
Keyword
Palliative care, sitting service, death place, care continuity, old people, noncancer diagnosis
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-21766 (URN)10.1111/j.1471-6712.2011.00966.x (DOI)000307103600018 ()22276925 (PubMedID)2-s2.0-84864778705 (Scopus ID)
Available from: 2012-02-24 Created: 2012-02-23 Last updated: 2017-12-07Bibliographically approved
2. Caring for dying patients outside special palliative care settings: experiences from a nursing perspective
Open this publication in new window or tab >>Caring for dying patients outside special palliative care settings: experiences from a nursing perspective
2007 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 21, no 1, 32-40 p.Article in journal (Refereed) Published
Abstract [en]

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.

Keyword
Nursing Care, Palliative Care, Sweden, Terminal Care
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-4423 (URN)10.1111/j.1471-6712.2007.00430.x (DOI)17428212 (PubMedID)
Available from: 2008-03-11 Created: 2008-03-11 Last updated: 2017-10-18Bibliographically approved
3. 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 home
Open this publication in new window or tab >>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 home
2011 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, 295-303 p.Article in journal (Refereed) Published
Abstract [en]

Objective: To describe enrolled nurses’ (ENs’) experiences of working in a sitting service for dying patients at home (which in this article will be referred to as SSH).

Methods: 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 organisation 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 analyse 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 in affecting private lives.

Significance of the results: SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organisation were not an option for dying patients and their families, the pressure on the healthcare organisation would be dramatically increased.

Place, publisher, year, edition, pages
Cambridge: Cambridge University Press, 2011
Keyword
enrolled nurses, end-of-life care, respite care, sitting service
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-21761 (URN)10.1017/S1478951511000241 (DOI)000309995700007 ()21838950 (PubMedID)2-s2.0-84855365420 (Scopus ID)
Available from: 2012-02-24 Created: 2012-02-23 Last updated: 2017-12-07Bibliographically approved
4. Family members' caregiving situations in palliative home care when sitting service is received: the understanding of multiple realities
Open this publication in new window or tab >>Family members' caregiving situations in palliative home care when sitting service is received: the understanding of multiple realities
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Abstract

In Sweden, an increasing number of older people, in need of palliative care, are living in private

homes with help from health professionals, but relatives are also expected to participate as

caregivers. The aim of this study was to deepen the understanding of multiple realities of family

members’ caregiving situations, when the private home is the place for care,

dying, and sitting

service. Seven relatives to a deceased family member were interviewed twice. Data were analyzed by

direct interpretation and categorical aggregation. The result showed various patterns of becoming a

caregiver. Important factors for coping with the situation were their needs of support, the possibility

to prepare for death, the length of illness trajectory and experiences of losses and grief. Sitting

service 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

Keyword
caregiving situations, multiple realities, family members, relatives, sitting service, palliative home care
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-21767 (URN)
Available from: 2012-02-23 Created: 2012-02-23 Last updated: 2017-10-17Bibliographically approved

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