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

Abstract

The application of restrictions plays a great part in daily support of people with moderate intellectual disability (ID). In this study we examine the evaluation of relatives of restrictions applied to their family members with moderate ID. Relatives are key and permanent figures in the lives of people with moderate intellectual disability. Moreover, relatives in their role as representatives are authorized to make decisions in case people with moderate ID are not able to oversee the consequences of their actions. To explore relatives' evaluation of restrictions, we conducted semi-structured interviews with 10 relatives. Qualitative analysis was carried out using a thematic approach. We found that respondents consider restrictions necessary when they promote physical well-being, safety and indistinctive, 'normal', appearance of their family members with ID. In applying these restrictions a 'rules are rules' and a 'tailor-made rules' approach can be discerned. The 'tailor-made approach' provides space for dialogue with people with moderate ID. In this dialogue the criteria of proportionality, effectiveness, and subsidiarity are helpful. In using these criteria, the application of a restriction has to be in proportion, has to lead to the desired effect, and, finally, should be as unintrusive as possible for the person concerned. As such, it is recommended that, in dialogue, support staff, people with moderate ID themselves, and their relatives seek ways to examine what kinds of restrictions are justified for people with moderate ID.

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

“…They consider it necessary to care for the client's physical and mental condition (vignette 1), a structured day‐rhythm (vignette 2), or an enduring relationship between the client and their family (vignette 3). This result is in line with our earlier research with regard to restrictions in the daily lives of people with moderate ID (Van der Meulen, Hermsen, & Embregts, 2018; Van der Meulen, Taminiau, Hertogh, & Embregts, 2018; Van der Meulen, Taminiau, Hertogh, & Embregts, 2019). In these studies, support staff as well as relatives of clients emphasize the necessity of applying daily life restrictions to provide clarity, structure, rest, and safety.…”

“…In various studies, the perspectives of support staff and relatives on the restrictions applied to their clients and family members with ID are examined (e.g., Elford, Beail, & Clarke, 2010;Hertogh et al, 2015;Heyvaert et al, 2014). More specifically, in previous studies, support staff and relatives of people with a moderate ID endorsed daily life restrictions, indicating these restrictions contribute to the physical well-being, safety, structure, and "normal" appearance of their clients and family members (Van der Meulen, Hermsen, & Embregts, 2018; Van der Meulen, Taminiau, Hertogh, & Embregts, 2019). Moreover, relatives stressed the imperative role of support staff in the application and maintenance of these restrictions.…”