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Advanced palliative home care: next-of-kin's perspective
Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala, Sweden.
PAH Team, Falu Hospital, Falun, Sweden.
2003 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 6, no 5, 749-756 p.Article in journal (Refereed) Published
Abstract [en]

Goals: (1) To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2) to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size.

Subjects and methods: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed.

Main results: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings.

Conclusions: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

Place, publisher, year, edition, pages
2003. Vol. 6, no 5, 749-756 p.
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-25273DOI: 10.1089/109662103322515257Local ID: 9713OAI: diva2:245601
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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