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

Abstract

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.

One social network, two perspectives: Social networks of people with Down syndrome based on self‐reports and proxy reports

“…With respect to network composition, according to both selfand proxy reports, the social networks of people with DS were largely comprised of family members. This finding is consistent with other network studies of people with intellectual disabilities (Kamstra, van der Putten, Post, & Vlaskamp, 2015;Krauss et al, 1992;Lippold & Burns, 2009;Rosen & Burchard, 1990;van Asselt-Goverts et al, 2013). However, while previous studies reported that professionals play a more important role in the social networks of people with intellectual disabilities than other non-family relation-…”

“…Ethnographic approaches have also been used to study the social networks of people with intellectual disabilities and their influence on employment (Donelly et al, 2010; Petner‐Arrey, Howell‐Moneta, & Lysaght, 2015). As well, proxy reports have been used, relying on information about the social networks of people with intellectual disabilities by surveying support staff or housing managers (Bigby, 2008; Forrester‐Jones et al, 2006), legal representatives and parents (Kamstra, van der Putten, Post & Vlaskamp, 2015).…”

Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis

“…However, within the field of severe and profound intellectual disability, it seems more meaningful to take a relational perspective (Grove, 2012; Simmons & Watson, ). Research shows that individuals with profound intellectual disability have little influence over their environments, with the family and school often remaining individuals’ main social networks (Kamstra, van der Putten, Post, & Vlaskamp, ; Wilder, ), coupled with a decrease in networks outwith the family towards adulthood (Gauthier‐Boudreault, Beaudoin, et al., ).…”

An investigation of the role of social support on physical activity participation among adults with intellectual disability

“…In contrast to Bigby's approach, Kamstra, van der Putten, Post, and Vlaskamp (2015) clearly defined informal and formal support as dichotomous. These researchers investigated the social networks of people with profound intellectual and multiple disabilities.…”

“…These researchers investigated the social networks of people with profound intellectual and multiple disabilities. They defined formal support as paid professionals who have clear job descriptions and informal support as non-professionals who have their own motivation for providing support to people with intellectual disability (Kamstra et al, 2015). This distinction does not account for the changing or overlapping roles of informal and formal supports highlighted by Bigby (1997) and others working with different population groups (Horowitz, 1985), but may be reflective of the experiences of people with intellectual disability with higher disability support needs.…”