Aafke Kamstra

The Structure of Informal Social Networks of Persons with Profound Intellectual and Multiple Disabilities

BACKGROUND Persons with less severe disabilities are able to express their needs and show initiatives in social contacts, persons with profound intellectual and multiple disabilities (PIMD), however, depend on others for this. This study analysed the structure of informal networks of persons with PIMD. MATERIALS AND METHODS Data concerning the number, type and frequency of contacts were collected in 205 persons with PIMD. RESULTS The mean number of contact persons was 5.1 (range: 0-26, SD: 4.2) per year. 79.4% of the contact persons are family, with an average of 72.3 contacts per year. Parents had significantly more contact compared to the other informal contact persons. In 2.2% of the sample contacts with peers were seen. CONCLUSIONS The informal networks of persons with PIMD consist mainly of family. The question arises how informal networks can be expanded and which role professionals have in this process.

Informal Social Networks of People with Profound Intellectual and Multiple Disabilities: Relationship with Age, Communicative Abilities and Current Living Arrangements

BACKGROUND People with profound intellectual and multiple disabilities (PIMD) have limited informal social contacts. Research to determine the factors which can positively influence establishing sound informal social contacts is required. MATERIALS AND METHODS Regression analysis for 200 people with PIMD was used to analyse how age, communicative abilities and current living arrangements were related to the number and frequency of their contacts. RESULTS Only age was negatively related to both the number and frequency of social contacts. Current living arrangements related only to the frequency of contacts. Communicative abilities related to neither. CONCLUSIONS Like people with intellectual disabilities, age and living arrangements are related to the informal social networks of people with PIMD. However, for people with PIMD, these networks are already more limited. Therefore, professionals need to be attentive to the maintenance and/or expansion of the social networks of people with PIMD at an early stage.

Efforts to increase social contact in persons with profound intellectual and multiple disabilities: Analysing individual support plans in the Netherlands.

Most people with profound intellectual and multiple disabilities (PIMD) have limited social contact and it is unclear what is done to maintain or increase these contacts. Individual support planning (ISP) can be used in the systematic enhancement of social contacts. This study analyses the content of ISPs with respect to the social contacts of people with PIMD. ISPs for 60 persons with PIMD in the Netherlands were inductively coded and illustrated with quotations. It turned out that every ISP contained information about social contacts. Of all the quotations extracted, 71.2% were about current conditions, 6.2% were about the future and less than 1% concerned actual goals. The social contacts of people with PIMD are mentioned in their ISPs, but this is rarely translated into goals. The results of the current study suggest that attention should be paid to ensuring that professionals understand the importance of social contacts and their application in practice.

Exploring spontaneous interactions between people with profound intellectual and multiple disabilities and their peers

ABSTRACT Background Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions between persons with PIMD and the possibilities provided by DSPs related to physical positioning. Method Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. Results Of all 213 observed interactions, 5.1% were with peers, 73.4% with DSPs, 14.9% with the observer, and 6.5% with others. In 61.3% of the observed timeframes, the participants with PIMD were positioned in a way that made it impossible to touch or/and to look at a peer. Conclusion Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers.