Who cares? Research into maintaining, strengthening, and expanding the informal social networks of people with profound intellectual and multiple disabilities

Social contacts are important for everyone and there is no reason to assume that this is not equally true for people with profound intellectual and multiple disabilities (PIMD). Yet, little information was available about the size, type and frequency of the contacts for this target group. With her dissertation ‘Who cares’, Aafke Kamstra made a start with the expansion of the current knowledge in this area.

The results of the research are worrisome; people with PIMD annually have contact with only five people outside of their living facility. These people are mainly family and parents are the most involved. Aging is related to fewer contact persons and a lower frequency of contact. Interaction between group members is barely noticed and the research shows that little opportunities are offered for interaction with group members. Professionals pay little attention to maintaining and expanding the networks. Professionals indicate that, even though they think this is important, they do not know how to shape this. Furthermore, they do not consider it as a part of the daily care.

Kamstra argues that social networks should be seen as a part of the daily care. Social networks are important for the quality of life of people with PIMD: social networks can defend the rights of a person with PIMD, prevent for loneliness, reduces health risk and enables participation.