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Family members' caregiving situations in palliative home care when sitting service is received: the understanding of multiple realities
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
Department of Nursing, Gjövik University College, Gjövik, Norge; Department of Palliative Care Research, Ersta Sköndal University College, Stockholm Sweden;.
School of Human Sciences, Linnaeus University, Kalmar, Sweden.
(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

Keywords [en]
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: urn:nbn:se:oru:diva-21767OAI: oai:DiVA.org:oru-21767DiVA, id: diva2:505160
Available from: 2012-02-23 Created: 2012-02-23 Last updated: 2017-10-17Bibliographically approved
In thesis
1. Utmaningar, utsatthet och stöd i palliativ vård utanför specialistenheter
Open this publication in new window or tab >>Utmaningar, utsatthet och stöd i palliativ vård utanför specialistenheter
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. p. 88
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 34
Keywords
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:nbn:se:oru:diva-21411 (URN)978-91-7668-860-1 (ISBN)
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

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Wallerstedt, Birgitta

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Citation style
  • apa
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  • nn-NB
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  • Other locale
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Output format
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  • text
  • asciidoc
  • rtf