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

• Published in: Journal of applied research in intellectual disabilities Vol. 28; no. 3; pp. 249 - 256
• Main Authors: Kamstra, A., van der Putten, A. A. J., Vlaskamp, C.
• Format: Journal Article
• Language: English
• Published: England Blackwell Publishing Ltd 01-05-2015; Wiley-Blackwell; Wiley Subscription Services, Inc
• Subjects: Disabled Persons - psychology; Disabled Persons - rehabilitation; Disabled Persons - statistics & numerical data; Family Relations; Family Relationship; Female; Friendship; Humans; informal networks; Intellectual disabilities; Intellectual Disability - psychology; Intellectual Disability - rehabilitation; Interpersonal Relations; Interpersonal Relationship; Male; Mental Retardation; Middle Aged; Multiple Disabilities; Parents; Peer Relationship; Professional Personnel; profound intellectual and multiple disabilities; Residential Facilities - statistics & numerical data; residential facility; Retrospective Studies; Role; Severe Mental Retardation; Severity (of Disability); Siblings; social contacts; Social Networks; Social Support; profound intellectual and multiple disabilities; social contacts; residential facility; informal networks; parents
• ISSN: 1360-2322; 1468-3148
• DOI: 10.1111/jar.12134

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.