Providing care to a family member in the terminal stage of cancer, family members' needs

Abstract

A qualitative research study was conducted to identify family caregivers' needs within the context of caring for a family member in the terminal stage of cancer and the caregiving responsibilities family caregivers' perceived as causing stress or burden, then to explore potential gaps in assistance and support for family caregivers. Ten primary family caregivers in a northern Manitoba community participated in the study. Data was collected using an in-depth semi-structured interview with each caregiver. Two main categories of car giver need were identified: the need for support and the need for information. Emotional support, including comfort, compassion, and acknowledgement of the toil of caregiving, was highlighted. Information on treatments, side effects, symptoms and the progression of the illness was essential to the provision of care. Caregiver stress or burden increased when these needs were not met. Caregivers' satisfaction with the health care system as a whole was based on their interactions with, and the performance of individual nurses, physicians and social workers. The results from this study suggest that the health care system must be more responsive to caregiver needs, especially in the areas of emotional support and information sharing if family members are expected to participate in the caring experience. The development of a health care position dedicated to providing emotional support and information to family caregivers, in which social work interventions would play a key role, is recommended.