Prendre en compte la vulnérabilité partagée pour réduire le recours à la contrainte dans la prise en charge des troubles graves du comportement des patients avec déficience intellectuelle et/ou autisme : une ethnographie-herméneutique participative

Abstract

ContextThe literature on the management of severe behavioral disorders (SBD) in patients with intellectual disabilities (ID) and/or autism spectrum disorders (ASDs) suggests that the work environment of healthcare professionals is challenging in order to provide care in conditions of sufficient safety for themselves and their patients with ID/ASD. This article reports the moral experiences of healthcare professionals regarding their use of alternatives to restraint in the care of patients with ID/ASD. MethodA participatory hermeneutic ethnography was conducted. The fieldwork was performed in 2017 in a Canadian care unit in a program for patient with ID/ASD and psychiatric comorbidities. As part of this qualitative research, 16 staff members volunteered to conduct interviews. ResultsThe study highlights health workers’ vulnerability brought on by the impacts of SBDs and the moral distress associated with the use of restraints and the exclusion of patients with ID/ASD. Two barriers to restraint alternatives are identified: the tension between care and restraint and the lack of inclusive approaches. Two factors supported the use of alternatives to restraint: protection of staff members and their personal commitment in care relationships. DiscussionIn this particular context of complex ID/ASD situations, two opposing conceptions of autonomy emerged. On the one hand, a rational conception of autonomy that is counterproductive to the maintenance and development of alternatives to restraint. On the other hand, a relational autonomy that takes into account the vulnerability of health care professionals as a benchmark to effectively reduce the use of restraints. Finally, the concept of shared vulnerability is proposed to support patient-centered care and alternative approaches to restraint. In this perspective, the self-care shown by health professionals promotes mutual respect with patients with ID/ASD.