How do people with moderate intellectual disability evaluate restrictions in daily care?

Abstract

Objectives: 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. Method: 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: 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. Conclusion: 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.