Experiences of Anticipated Grief in Primary Informal Caregivers from the Metropolitan Region (Chile): Occupational Changes

Abstract

Introduction: The loss of a loved one is constructed as an inevitable human experience, which generates an emotional experience that impacts both the individual experiencing the loss and his or her environment. Objective: To investigate the relationship between anticipated grief processes and alterations in the occupational participation of informal primary caregivers of terminally ill persons in the Metropolitan Region of Chile. Method: Qualitative approach with 7 individual semi-structured interviews with adult caregivers in the south and west of the region. Results: Experiences and subjectivities were categorized that express the importance that women attribute to the care of their relatives, with little emotional demonstration during this stage. In addition, categories such as routines and roles emerge, where many women prioritize caregiving; support networks, with frequent reports on the lack of help and tools beyond the economic; and areas of occupation affected, predominantly rest and sleep, although self-care and social participation are also mentioned. Conclusion: Although the process of anticipatory grief generates pain and self-exhaustion, it is informal caregiving that generates changes in the participation and quality of life of women caregivers.