The complexity of caregiving amid challenges: experiences of families with young caregivers

Abstract

Objective: To build a substantive theoretical model on the trajectory of families with young caregivers in the process of caring for a family member with a disabling condition. Methodology: Exploratory, qualitative study, conducted using the references of Grounded Theory and Complex Thinking. Data collection took place between August 2022 and October 2023, in the homes of 15 young people and 7 family caregivers. The analysis followed three stages: open, axial, and selective coding, with the support of ATLAS.ti® software. Results: The trajectory of families with young caregivers proved to be a process permeated by barriers to care, relational and ethical challenges, and multiple repercussions for young people and caregivers. Barriers associated with family unavailability and care overload were evident, as were challenges linked to the resistance of the family member being cared for, fear of reporting, and concern for the young caregiver’s quality of life, as well as consequences that impact the well-being of young people and their guardians. Conclusion: Care provided by young people is a complex, multifactorial, and dynamic phenomenon that requires attention from health professionals, especially in primary care, based on a comprehensive understanding of the contexts and social determinants.