van der Meulen Anne Pier Schelte, Taminiau Elsbeth Frederieke, Hertogh Cees Cornelis Marinus Petrus, Embregts Petri Petronella Johanna Catharina Maria
Department of Tranzo, Tilburg University, Tilburg, Netherlands.
Elver, Organisation for People with Intellectual Disabilities, Arnhem-Wehl, Netherlands.
Int J Dev Disabil. 2018 Jun 8;64(3):158-165. doi: 10.1080/20473869.2018.1442182.
One of the general articles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on the right of freedom to make one's own choices and being aware of the importance for persons with disabilities to obtain independence. People with intellectual disability (ID) are, to a greater or lesser degree, dependent on significant others, such as support staff with respect to decision making. For that reason, the UNCRPD also stresses the relevance of supportive decision making, which should be stimulated by service policies. However, support staff may find it necessary to restrict people with ID to make their own choices, for example to prevent them from harm. Since restrictions should be applied in the interest of people with ID, it is essential to examine their own perception. In this study, we have examined how people with moderate ID themselves perceive and evaluate restrictions in daily care, using a qualitative methodology.
Based on an extensive pilot study, we conducted interviews being close in time and place in which possible restrictions might occur. Additionally, we applied triangulation of sources. After conducting interviews with eight persons with a moderate ID, we examined their clinical files and interviewed their key workers. Qualitative analysis was carried out by two researchers, using an inductive, thematic approach.
Results demonstrate communality between the participating people with ID and their key workers in perception and evaluation of restrictions, in people with ID tending to comply with the applied restrictions. When the participants with ID and their key workers differ in their evaluation of applied restrictions, this appears a value based dissensus.
To ensure that restrictions are applied in the best interest of people with ID, it is essential that staff are attentive to the wishes of people with ID, which might be based on different values. By asking people with ID about their experiences and views of the restrictions imposed on them, we hope to contribute to an ongoing and open dialogue to inform the planning and delivery of services for people with ID based on 'best interest' principles.
《联合国残疾人权利公约》（UNCRPD）的一般性条款之一聚焦于自主选择的自由权，并意识到残疾人获得独立的重要性。智障人士在很大程度上依赖于重要他人，比如在决策方面依赖支持人员。因此，《联合国残疾人权利公约》也强调支持性决策的相关性，服务政策应鼓励这种决策。然而，支持人员可能认为有必要限制智障人士做出自己的选择，例如为防止他们受到伤害。由于限制措施的实施应以智障人士的利益为出发点，所以审视他们自身的看法至关重要。在本研究中，我们采用定性研究方法，探究了中度智障人士如何看待和评估日常护理中的限制措施。
基于一项广泛的试点研究，我们在可能出现限制措施的时间和地点附近进行了访谈。此外，我们还采用了资料来源三角互证法。在对八名中度智障人士进行访谈后，我们查阅了他们的临床档案，并与他们的关键工作人员进行了访谈。两名研究人员采用归纳主题法进行了定性分析。
结果表明，参与研究的智障人士及其关键工作人员在对限制措施的看法和评估上具有一致性，智障人士倾向于遵守所实施的限制措施。当智障人士及其关键工作人员对所实施的限制措施评估不同时，这似乎是基于价值观的分歧。
为确保限制措施的实施符合智障人士的最大利益，工作人员必须关注智障人士的意愿，这些意愿可能基于不同的价值观。通过询问智障人士对施加于他们的限制措施的经历和看法，我们希望有助于开展持续且开放的对话，以便根据“最大利益”原则为智障人士规划和提供服务。
