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Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities

Published online by Cambridge University Press:  20 June 2013

Birgitta Wallerstedt ,
Birgitta Andershed  and
Eva Benzein
Birgitta Wallerstedt*
Affiliation:
School of Human Sciences, Linneaus University, Kalmar, Sweden
Birgitta Andershed
Affiliation:
Department of Nursing, Gjøvik, University College, Gjøvik, Norway and Department of Palliative Care Research, Ersta Sköndal University College, Stockholm, Sweden
Eva Benzein
Affiliation:
School of Human Sciences, Linneaus University, Kalmar, Sweden
*
Address correspondence and reprint requests to: Birgitta Wallerstedt, School of Human Sciences, Linneaus University, 391 82 Kalmar, South Sweden. E-mail: birgitta.wallerstedt@lnu.se
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Abstract

Objective:

To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

Methods:

Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

Results:

Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

Significance of the research:

Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

Keywords

Family membersCaregiving situationsMultiple realitiesSitting servicePalliative home care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 12 , Issue 6 , December 2014 , pp. 425 - 437
Copyright
Copyright © Cambridge University Press 2013 

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