“The life that was mine is now hers”: being an informal caregiver of people with disabilities

Abstract

Background: Informal caregivers experience a significant overload that leads to changes in their perspectives and quality of life, in addition to impacts on their physical and emotional health. Objective: We aim to describe and analyze the use of time, experienced difficulties, perceived changes and feelings of informal caregivers. Methods: Transcripts of 33 interviews were subjected to thematic content analysis and through them we have obtained four categories: abandonment of occupations and loss of identity; changing perspectives and values; difficulties in accepting the diagnoses; fears about the future. Results: The great dedication to caring for the other implies the abandonment of significant occupations, shows changes in values and life perspectives and points to great concerns about the future. Conclusion: Paradigm shifts are necessary to understand, in fact, how complex it is to become and remain as an informal caregiver of a person with any type of disability or limitation, while considering that the dedication of the caregiver is, for the most part, unconditional.