Characteristics and experiences of family caregivers in the mental health setting

Abstract

Objective. To describe the characteristics and experiences of family caregivers of persons with mental disorders in a highly complex institution. Materials and methods. Mixed method, explanatory study, with an initial quantitative and then qualitative sequence. The quantitative phase was carried out using validated instruments: characterization sheet of the person with chronic illness-family caregiver dyad; the Nkongho Caregiving Ability Inventory (CAI), and the Zarit burden scale. The qualitative phase was conducted with a hermeneutic phenomenological approach; the information was collected through in-depth interviews to understand the needs of the caregivers. Results. The caregivers were mostly women, mainly mothers and daughters, home-occupied and self-employed, with basic primary education, low socioeconomic level and low caregiving skill level; a significant number of caregivers perceived some degree of overload. The themes identified in the analysis of the interviews were: feeling fear before the disease; the experience of caregiver fatigue; losing one’s job: another cost of the disease; fear of delegating care; love: a support for the caregiver; needing support to care. Conclusions. The caregiver experiences a complex situation associated with the high demand for care, and conditions under which mental health impairment progresses.