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.