Care relationships and the autonomy of people with physical disabilities

Bioethics 36 (5):525-534 (2022)
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Abstract

As a form of functional diversity, spinal cord injury expressed by tetraplegia is one of the most serious events that can impact people, affecting their family and socioeconomic life. The type of care relationship established in these cases will be essential for preserving autonomy. The objective of this study was to understand how care relationships influence the autonomy of people with tetraplegia and the dynamics that trigger practices of autonomy violation, maintenance and promotion. This research is inspired by problematization as a methodology using the Arch of Maguerez as an analytical approach strategy that enables an engagement between empirical and theoretical data. Some models of care relationships identified in this study either promote or violate autonomy: the protectionist model, based on the biomedical interpretation model of disability and the bodily impediments caused by spinal cord injury; the participatory model, involving the patient's interest in adapting to their new condition of family and community life, seeking to understand the practical aspects of daily life; the sharing model, in which the complicity and understanding of new forms of bodily expression allow the caregiver to be almost an extension of the tetraplegic person's body; the delegate model, which occurs in relationships with professional caregivers; and the emancipatory model, which seeks to empower the patient, highlight potentialities, and encourage autonomy. The key components of these conceptual care models guided the elaboration of hypotheses for intervention with the objective of maintaining and promoting the autonomy of people with tetraplegia through supported care.

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