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Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers
Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
2004 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 13, no 9, 605-618 p.Article in journal (Refereed) Published
Abstract [en]

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

Place, publisher, year, edition, pages
2004. Vol. 13, no 9, 605-618 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-24730DOI: 10.1002/pon.774Local ID: 6980OAI: diva2:245053
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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