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The modified self: family caregivers’ experiences of caring for a dying family member at home
Department of Palliative Care Research, Ersta Sköndal University College, Stockholm and Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
Örebro University, School of Health and Medical Sciences.ORCID iD: 0000-0003-3702-3831
Department of Social and Welfare Studies, Norrköping Linköping University, Norrköping, Sweden.
Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Research and Development Unit, Stockholm Sjukhem Foundation, Stockholm and Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet.
2010 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 7-8, p. 1097-1105Article in journal (Refereed) Published
Abstract [en]

Aim: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home.

Background: Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image.

Design: Qualitative descriptive study.

Methods: Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description.

Result: Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space.

Conclusions: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home.

Relevance to clinical practice: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2010. Vol. 20, no 7-8, p. 1097-1105
National Category
Nursing
Research subject
Medicine; Caring Sciences w. Medical Focus
Identifiers
URN: urn:nbn:se:oru:diva-12509DOI: 10.1111/j.1365-2702.2010.03331.xISI: 000288166500021PubMedID: 21040038Scopus ID: 2-s2.0-79952497822OAI: oai:DiVA.org:oru-12509DiVA, id: diva2:371347
Available from: 2010-11-19 Created: 2010-11-19 Last updated: 2018-04-19Bibliographically approved

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Sahlberg-Blom, EvaTernestedt, Britt-Marie

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