Caregiving for women with advanced breast cancer.

Aim: To describe the psychosocial impact on caregivers of caring for women with advanced breast cancer.

Methods: Five focus groups were held with bereaved caregivers. Qualitative content analysis of the transcripts was conducted to identify emerging themes.

Results: Two categories of caregivers were identified: spouse caregivers (SCGs) and non-spouse caregivers (NSCGs), who were either close friends or relatives. SCGs and the patient managed care cooperatively and shared care-related decision making. Working SCGs managed multiple roles but employers gave them support and freedom to take the time that was necessary to care for their wives. NSCGs had the most life roles to manage, and saw themselves as agents for the patient. The terminal phase of disease was most burdensome for all caregivers, although NSCGs had the most difficulties. During this phase, the patients' activities of daily living became much more impaired. In addition, some patients were not willing to receive continence support from caregivers, and some caregivers found that they could not provide continence support. SCGs were able to negotiate these care-related roles with their spouse, but NSCGs struggled to satisfy the wishes of the patient.

Conclusion: Caregivers assume great responsibility for providing care, particularly during the terminal phase. Caregiving becomes more complex with each additional life role of the caregiver. SCGs have two advantages: (1) living with the patient facilitates caregiving and (2) patterns of decision making that were established previous to the illness facilitated shared decision making between the patient and spouse caregiver.