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Caregiving at the end of life: Perspectives from spousal caregivers and care recipients

Published online by Cambridge University Press:  27 February 2007

SUSAN JO ,
KEVIN BRAZIL ,
LYNNE LOHFELD  and
KATHLEEN WILLISON
SUSAN JO
Affiliation:
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada
KEVIN BRAZIL
Affiliation:
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada Division of Palliative Care, Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
LYNNE LOHFELD
Affiliation:
Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
KATHLEEN WILLISON
Affiliation:
Division of Palliative Care, Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada St. Joseph's Healthcare, Hamilton, Ontario, Canada
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Abstract

Objective: The purpose of this study is to examine the perspectives of both the spousal caregiver and care recipient on the caregiving experience in home-based palliative care.

Methods: A qualitative research strategy involving home-based face-to-face interviews with older palliative care patients and their spousal caregivers was used to examine the caregiving experience.

Results: Ten spousal caregivers and care recipient dyads participated in the study. Most informal caregivers viewed caregiving as an extension of the family relationship where caregiving responsibilities evolved over time. Spousal caregivers identified many negative reactions to caregiving, such as fatigue or weariness, depression, anger and sadness, financial stresses, and lack of time. Care recipients acknowledged the emotional and financial strain and expressed concern for their spouses. Both caregivers and care recipients were appreciative of home care services although they identified the need for additional services. They also identified difficulties in communication with formal providers and poor coordination of care among the various services. Both caregivers and care recipients disclosed some challenges with informal supports, but on the whole felt that their presence was positive. Additional positive aspects of caregiving reported by spouses included strengthened relationship with their spouse and discovering emotional strength and physical abilities in managing care.

Significance of results: Health care and social service professionals need to recognize and understand both caregiver and care recipient perspectives if they are to successfully meet the needs of both members of the dyad.

Keywords

End-of-life careFamily caregiversCare recipientsQualitative interviewsHome-based palliative care
Type
Research Article
Information
Palliative & Supportive Care , Volume 5 , Issue 1 , March 2007 , pp. 11 - 17
Copyright
© 2007 Cambridge University Press

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