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


CONCLUSIONS
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.
Jo
Susan
S
St. Joseph's Health System Research Network, Hamilton, Ontario, Canada.
Brazil
Kevin
K
Lohfeld
Lynne
L
Willison
Kathleen
K
D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D003863:Depression; D005221:Fatigue; D005260:Female; D006699:Home Care Services; D006701:Home Nursing / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009864:Ontario; D010166:Palliative Care / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support; D018454:Spouses / Q000523:psychology*; D013315:Stress, Psychological; D019452:Terminally Ill / Q000523:psychology*