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Next of kin’s experience of powerlessness and helplessness in palliative home care
Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
LAH Linnea-enheten, Vrinnevisjukhuset, Norrköping, Sweden.
2004 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 12, no 2, 120-128 p.Article in journal (Refereed) Published
Abstract [en]

Goals of work  Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.

Patients and methods  The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.

Main results  Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kins perception of the patients suffering, of the patients fading away and the next of kins own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.

Conclusions  The main findings provide tools for the practitioner to identify situations contributing to next of kins sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans search for action.

Place, publisher, year, edition, pages
2004. Vol. 12, no 2, 120-128 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-23726DOI: 10.1007/s00520-003-0569-yLocal ID: 3233OAI: diva2:244041
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2012-10-16Bibliographically approved
In thesis
1. Family members' experience of palliative home care
Open this publication in new window or tab >>Family members' experience of palliative home care
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The presence of a family member is often a prerequisite for successful palliative home care. The overall aim of this thesis was to contribute to a deeper understanding of family members' experiences of having a dying relative or friend cared for by advanced palliative home care. Two methodological approaches were used. Semi-structured tape-recorded interviews were analysed with a hermeneutic approach (19 family members; 30 interviews). Two postal questionnaires with open-ended questions were distributed and the responses (217 and 233, respectively) were analysed with qualitative and quantitative content analyses.

All studies had a salutogenic orientation, i.e. with the origin of health in focus, and therefore facilitating as well as burdensome aspects were studied. In the interview studies, Antonovsky's salutogenic theory of Sense of coherence was applied as a framework, and the concepts of comprehensibility, manageability and meaningfulness were used.

The studies showed that when the family members evaluated the palliative home care, they mentioned both positive and negative aspects with regard to the service, e.g. accessibility and staff competence, and comfort factors, e.g. feeling secure and being at the centre of attention.

Comprehensibility concerned more than traditional information-giving and included symbols, basic life assumptions and previous knowledge, which were important for creating an inner congruent reality, as opposed to an inner chaos.

Staff - family member interactions contributed to manageability by facilitating the family member's feeling of sharing the responsibility and contributing to the care together with the staff.

Having a dying relative of friend could include also feelings of meaningfulness in an otherwise burdensome situation. Participating in the care, feeling hope, knowing that the patient did not suffer and doing the best possible had contributed to a feeling of meaningfulness.

Of the family members, 36% had experienced powerlessness and/or helplessness, whereas 33% stated that they had never had such feelings during the palliative home care period. The feelings were characterised by perception of the patient's suffering, his/her fading away, and a feeling of own insufficiency. Moreover, the meaning of powerlessness and helplessness involved a deeper level including feelings of guilt, anger and loneliness.

It is concluded that a salutogenic perspective is relevant in palliative home care. When staff interacts with family members in palliative care, there is a potential for facilitating the family members' perception of manageability, comprehensibility and meaningfulness. Understanding of home as a place of palliative care seems important and includes the contribution of a familiar environment, retained everyday life and of a basis for self-transcendence. Staff needs also to be aware of the risk of negative aspects, such as lost privacy and changed meaning of the home. Higher abstraction levels, including existential dimensions, such as security and powerlessness were essential parts of the family members' experiences. If such experiences are not considered in goal-setting and in service evaluation, important parts of palliative care will not be reflected by the chosen/measured parameters.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet, 2003. 52 p.
Linköping University Medical Dissertations, ISSN 0345-0082 ; 821
family member, palliative home care, Sense of coherence, salutogenesis, comprehensibility, manageability, meaningfulness, powerlessness, helplessness
National Category
Medical and Health Sciences
urn:nbn:se:liu:diva-25691 (URN)10067 (Local ID)91-7373-513-2 (ISBN)10067 (Archive number)10067 (OAI)
Public defence
2003-11-13, Victoriasalen, Universitetssjukhuset, Linköping, 09:00 (Swedish)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-10-16Bibliographically approved

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