School of Health Sciences, University of Brasilia, Campus Universitário Darcy Ribeiro Asa Norte, Brasilia, Brazil.
Bioethics. 2022 Jun;36(5):525-534. doi: 10.1111/bioe.13026. Epub 2022 Apr 28.
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.
作为功能多样性的一种形式，四肢瘫痪所表现出的脊髓损伤是最严重的事件之一，会对患者及其家庭和社会经济生活产生影响。在这些情况下建立的护理关系对于维护自主权至关重要。本研究的目的是了解护理关系如何影响四肢瘫痪患者的自主权，以及触发侵犯、维护和促进自主权行为的动态。这项研究的灵感来自于作为一种方法论的问题化，使用马格雷厄拱作为分析方法策略，使经验和理论数据之间能够产生互动。本研究中确定的一些护理关系模式要么促进自主权，要么侵犯自主权：保护主义模式，基于残疾的生物医学解释模型和脊髓损伤引起的身体障碍；参与模式，涉及患者对适应家庭和社区生活新状况的兴趣，寻求理解日常生活的实际方面；共享模式，在这种模式中，对新形式的身体表达的默契和理解使护理人员几乎成为四肢瘫痪者身体的延伸；委托模式，发生在与专业护理人员的关系中；以及解放模式，旨在赋予患者权力，突出潜力，并鼓励自主权。这些概念护理模式的关键组成部分指导了干预假设的制定，目的是通过支持性护理来维护和促进四肢瘫痪患者的自主权。
