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.

Perspective of relatives on restrictions applied to their family members with moderate intellectual disability

“… 2018a ), people with a moderate ID themselves (Van der Meulen et al. 2018b ), and their relatives indicate that restrictions in daily care are applied, and they simply provide the same explanations, i.e. restrictions contribute to clients’ physical well-being, their safety, and daily life structure.…”

“…Taking into account that their responses might be socially desirable, people with moderate ID generally show agreement with these restrictions, indicating that these restrictions contribute to their own physical well-being, safety and structure, and prevent others from inconvenience. However, when a disruption in their privacy or infringement of their dignity is at stake, they show disagreement (Van der Meulen et al 2018b). In evaluating these daily life restrictions, people with moderate ID attach great value to the view of their relatives, which seems to be guide for their own opinion-making ( Van der Meulen et al 2018b).…”

“…However, when a disruption in their privacy or infringement of their dignity is at stake, they show disagreement (Van der Meulen et al 2018b). In evaluating these daily life restrictions, people with moderate ID attach great value to the view of their relatives, which seems to be guide for their own opinion-making ( Van der Meulen et al 2018b).…”

“…In evaluating these daily life restrictions, people with moderate ID attach great value to the view of their relatives, which seems to be guide for their own opinion-making (Van der Meulen et al. 2018b ).…”

Does Moral Case Deliberation Change Current Views on Restrictions?: Staff Perceptions on Restrictions

“…The first limitation concerns the validation of this study and refers to the dilemmas discussed. These dilemmas did not originate from the teams of respondents themselves but were derived from earlier studies (Van der Meulen, Hermsen, & Embregts, 2018;Van der Meulen, Taminiau, Hertogh, & Embregts, 2018). Although these dilemmas were tested in a try-out and were considered as well-known dilemmas by support staff in both teams, they were hypothetical and not compiled on experiences with their own clients.…”