Introduction: This article aims to identify key challenges raised by fragmented healthcare systems by adopting the lens of patients. We analyzed how high fragmentation leads to the loss of humanity from healthcare providers as perceived by the parents of children born with disabilities.
Methods: Twenty-nine Lebanese families of children born with disability agreed to participate. Data was collected through semi-structured interviews, recorded and then coded using Nvivo 11. The coding followed an abductive approach.
Results and contribution: The study revealed the financial and bureaucratic burdens, the reification and relational challenges of fragmented healthcare systems. We identified how parents became an expert patient and a care path manager. Our contribution is by addressing the fragmentation issue from the parents' point of view. In this way, we further contribute to documenting the impact of fragmentation, on the lives of patients and their families and the intensity of the violence generated by the institutional system that amplifies the trauma inherent to the clinical case which refers to the chronic emotional and psychological distress that parents endure as they repeatedly confront care discontinuities, administrative barriers, and the need to compensate for the system's failures.
Keywords: Reification; care path; disability; expert patient; healthcare system; privatization.