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A desire to be seen:: family caregivers' experiences of their caring role in palliative home care
Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, East County Primary Health Care.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.ORCID iD: 0000-0002-9606-3238
2010 (English)In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 1, 28-36 p.Article in journal (Refereed) Published
Abstract [en]

Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

Place, publisher, year, edition, pages
Lippincott Williams & Wilkins, 2010. Vol. 33, no 1, 28-36 p.
National Category
URN: urn:nbn:se:liu:diva-59530DOI: 10.1097/NCC.0b013e3181af4f61OAI: diva2:352128
Available from: 2010-09-20 Created: 2010-09-17 Last updated: 2015-06-10Bibliographically approved

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Friedrichsen, Maria
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East County Primary Health CareDivision of Health, Activity and CareFaculty of Health SciencesCenter of Palliative Care
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