Social Representations of In-Home Caregivers of Terminally Ill Patients: The Family Caregiver’s Point of View

Abstract

Objective: To learn about the social representations of home care by family caregivers of terminally ill patients. Method: Qualitativestudy with eleven family caregivers of terminally ill patients, registered in the home care service of a teaching hospital in southern Brazil.The researchers conducted narrative interviews and used the content analysis method to analyze them. Four categories were established:male and female caregivers, a different perspective; role reversal and changes in care; experiences as a source of knowledge for homecare; and healthcare challenges. Results: Representations by male caregivers differ from those of female caregivers because care alsoincludes the context. Male caregivers do not associate distress to excessive burden but to the fear of losing someone. Other representationsrefer to the impossibility of choice to assume the role of caregiver and to role reversal, which causes patients to be submissivewith the caregiver. Conclusion: The research revealed how family caregivers construct meanings and how they interpret the home careprovided through the home care program. Particular attention is given to the role of healthcare professionals in guiding family caregivers.