Introduction:

the challenges faced by families of children with special health care needs to secure their rights are intensified in the absence of comprehensive care. Aim: to understand the challenges experienced by children with special health care needs and their families related to the practice of comprehensive care and the reconstruction of their life projects.

Method:

a qualitative study grounded in comprehensive care and hermeneutic-dialectical principles. Nineteen caregivers and fifteen primary care nurses were interviewed. From the inductive thematic analysis, four categories emerged: absence of support and guidance in the diagnostic process: challenges and care relationships; lack of interest and empathy as ontological barriers to comprehensive care practice; disorganization and insufficient professional training as obstacles to care; strengthening therapeutic encounters for the construction of life projects.

Conclusion:

the fragility of dialogical relationships impaired the practice of comprehensive care and the pursuit of life projects.

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