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När livsrummet krymper: vård och omsorg av äldre personer i livets slutskede
Ersta Sköndal University College, Department of palliative care research.
2009 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This research focused on the life situation of older people, who had moved to a nursing home at the end of life, from the perspectives of the older people themselves, care managers and nursing staff. The thesis is based on an analysis of 446 care manager assessments and decisions, interviews with seven care managers, six older people and 28 nursing staff. The main fi ndings are: (I); that there was a statistically signifi cantly shorter waiting time for a move to a nursing home for older people who were in hospital compared to those who were living in their own home at the time of the decision. Seventy percent of the decisions made by care managers’ concerned women. The waiting period for men was fi ve days shorter compared to women. (II); that the care managers’ descriptions revealed that their assessments of the needs and wishes of the older people were infl uenced by whether or not it was clear that the older person had only a limited time left to live. The care managers’ way of reasoning has been conceptualised as two approaches, the medical and the natural path to death, where the former was characterised as fl exible and collaborative, whereas the latter was governed to a greater extent by a “wait and see attitude”. (III); that the older people’s experiences of living in a nursing home have been conceptualised into three themes: feeling like a stranger in an unfamiliar culture, being excluded from life, and living while waiting for death. The latter involved a deep insight that life would soon come to an end; a fact the staff appeared to take into account to only a minor extent. (IV); that dying and death was characterised by a discourse of silence, with tension between avoidance of and a confrontation with death. Staff members who expressed a fear of death held it at a distance by concentrating on practical tasks and avoiding close contact with older people who were dying. The thesis highlights the fact that the dying and death of older persons was characterised by a discourse of silence and several transitions. Death was not a topic that the staff members or older people generally talked about, and care in the fi nal phase of life was not actively or explicitly planned. In terms of access to a nursing home bed, only older people with an extensive need for care obtained such a place. These fi ndings imply that all older people can be said to be in need of palliative care. The older people in our study were in a liminal phase, and waiting for death. Feelings of social and existential loneliness and that their living space was shrinking were evident. It was also clear that the older people and staff members inhabit the same place but appear to be in two different sub-cultures, where the norms and values that guided the staff members’ attitudes were dominant. Keywords: transition, older people, end of life care, palliative care, nursing home, caring, care manager and staff

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2009. , 94 p.
Series
Örebro Studies in Caring Sciences, ISSN 1652-1153 ; 24
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-594OAI: oai:DiVA.org:esh-594DiVA: diva2:346992
Public defence
2009-09-25, Hörsal P1, Prismahuset, Örebro universitet, Fakultetsgatan 1, Örebro, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2010-09-02 Created: 2010-09-02 Last updated: 2011-05-16Bibliographically approved
List of papers
1. Moving on a roundabout at the end of life-What counts? Waiting times for transfer to sheltered accommodation for older people in Sweden.
Open this publication in new window or tab >>Moving on a roundabout at the end of life-What counts? Waiting times for transfer to sheltered accommodation for older people in Sweden.
2009 (English)In: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, Vol. 91, no 2, 183-8 p.Article in journal (Refereed) Published
Abstract [en]

In Sweden, increased care in ordinary housing has contributed to a reduction of rooms in sheltered accommodation. The allocation of rooms has become stricter. Only those whose care needs cannot be met in any other ways are allocated such accommodation. The aim was to explore the waiting time between the transfer decision and the accomplishment of the move from the initial form of care to sheltered accommodation as well as whether there were differences in waiting time in relation to certain demographic data. METHOD: 445 decision documents were analysed. Mean and 95% confidence intervals (CI) for waiting time and date of the move to sheltered accommodation were calculated. Differences between mean age and waiting time were analysed using Student's T-test. Effects of age, gender and cohabitation on waiting time were estimated by means of multifactor linear regression. RESULTS: The main finding was that the difference in mean waiting time was shortest when moving from hospital, irrespective of destination. There were no significant differences in waiting time in relation to gender, age or cohabitation. CONCLUSION: The reason for a move was often described by means of abstract standard formulations. There is a need for standardised models and assessment instruments in order to ensure older people's safety and to compare different forms of accommodation.

National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-87 (URN)10.1016/j.healthpol.2008.12.008 (DOI)19152983 (PubMedID)
Available from: 2010-05-07 Created: 2010-05-07 Last updated: 2015-11-04Bibliographically approved
2. Pathways in end-of-life care for older people: care managers' reasoning.
Open this publication in new window or tab >>Pathways in end-of-life care for older people: care managers' reasoning.
2008 (English)In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 14, no 9, 420-5 p.Article in journal (Refereed) Published
Abstract [en]

Seven care managers employed by a large municipality in Sweden were interviewed concerning their reasoning regarding end-of-life care for older people. Data were analyzed using a hermeneutic approach. The results showed that end-of-life care was considered to constitute a small part of the care managers' work and was something they did not focus on in general when assessing care needs. Two different pathways to death--the natural and the medical--were identified. In the natural pathway, death was invisible and the care was more routine-oriented. In the medical pathway, death was visualised and the care more individualised. Neither of the pathways paid attention to communication or existential needs. Thus, there is a need for a palliative pathway to death based on the philosophy of palliative care, which could provide guidance for care managers and promote opportunities for older people to achieve a dignified dying and death.

National Category
Nursing Other Health Sciences
Identifiers
urn:nbn:se:esh:diva-136 (URN)19060792 (PubMedID)
Available from: 2010-05-19 Created: 2010-05-19 Last updated: 2015-11-04Bibliographically approved
3. Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home
Open this publication in new window or tab >>Feeling lonely in an unfamiliar place: older peoples experiences of life close to death in a nursing home
2017 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, Vol. 12, no 1, 1-8 p., e12129Article in journal (Refereed) Published
Abstract [en]

Aim: The aim of the study was to deepen the understanding of how older persons living in a nursing home experience life close to death.

Background: A move to and a life in a nursing home while being close to death is a reality for many older people in Sweden. Being able to express thoughts and feelings about death has been described as both crucial for sustaining personhood as well as for establishing a meaningful existence at the end of life. Important are the experiences of older people living in nursing homes who are approaching death.

Method: Six older people were interviewed on one to four occasions. A total of 16 interviews were conducted with the participants. An interpretative approach was chosen.

Findings: The main interpretation, Feeling lonely in an unfamiliar place, is based on three themes (i) Waiting for death, with the subthemes death as a release and thinking of oneself as dead; (ii) Subordinate oneself to values and norms of the staff, with the subthemes feeling offended and feeling trapped; and (iii) Keep the courage up. The older people's lives were characterised by feelings of aloneness in an unfamiliar place which contributed to a sense of existential loneliness. They experienced few opportunities to discuss their thoughts of life and death, including preparations for passing away.

Conclusion and implication for practice: It is of importance for professionals to be able to meet older people as they are and respect them as human beings in their transitions, before, during and after the move to a nursing home. It is important to find ways to support older people's wellbeing and identity near death.

Keyword
End-of-life care, Nursing Home, Older People, Palliative Care, Transition
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-592 (URN)10.1111/opn.12129 (DOI)27624362 (PubMedID)
Note

Publication Status in Dissertation: Manuscript

Title in Dissertation: Life close to death in a nursing home : older peoples experiences.

Available from: 2010-09-02 Created: 2010-09-02 Last updated: 2017-07-10Bibliographically approved
4. A discourse of silence: professional carers resoning of death and dying in nursing homes
Open this publication in new window or tab >>A discourse of silence: professional carers resoning of death and dying in nursing homes
Show others...
2011 (English)In: Ageing & Society, ISSN 0144-686X, E-ISSN 1469-1779, Vol. 31, no 4, 529-544 p.Article in journal (Other academic) Published
Abstract [en]

Nursing homes are a setting in which death and dying is common. How death and dying is articulated and the actions that take place in a nursing home constitute adiscourse that guides the staff in their work. The aim of this studywas to explore thediscourse of death and dying in nursing homes from the perspective and understandingof the staff. The study draws on Foucault’s discourse analysis. Data arefrom fivefocus-group discussions held with 28 staff of four different nursing homes in Sweden. The findings show that the discourse had three characteristics :(a) dying was silent and silenced, (b) emotions were pushed into the background,and (c) attentiveness to death arose after the moment of the elderly person’s death. The structure of the discourse was characterised by a movement between twopositions, avoiding and confronting death, themain focus being on avoidance. Thearticulation and practices of silence highlight a need to regard dying as a processthat requires attention. One way to ensure appropriate attention could be to instil the philosophy of palliative care in nursing homes, including training and supportfor the staff in their work. The study demonstrates that nursing-home staff needmore knowledge and support to enable them to feel that they do a good job.

Place, publisher, year, edition, pages
Cambridge: Cambridge university press, 2011
Keyword
older people, death and dying, nursing home, staff, focus-group discussions, discourse analysis
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-593 (URN)10.1017/S0144686X10000905 (DOI)
Available from: 2010-09-02 Created: 2010-09-02 Last updated: 2017-01-17Bibliographically approved

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