Known well by no-one: trends in the informal social networks of middle-aged and older people with intellectual disability five years after moving to the community

Abstract

Background: Informal relationships are central to conceptualisations of quality of life. Deinstitutionalisation studies consistently suggest a trend of increased contact with family and friends by people with intellectual disability (ID) following relocation from an institution to the community. In this study, changes in the nature of the informal relationships of residents 5 years after leaving an institution were examined.

Method: A sample of 24 participants was randomly selected from a group of 55 residents who moved to the community. Data were collected prior to leaving the institution, and 1, 3 and 5 years after the move, through interviews with staff, a telephone survey with 20 family members, and intensive case studies undertaken with a small purposive sub-sample of 11 residents.

Results: Data indicated that: (i) residents did not form new relationships after relocation, (ii) the number of residents in regular touch with a family member decreased, and (iii) patterns of contact changed as residents aged. Some 62% of residents had no-one outside the service system who knew them well or monitored their well-being.

Conclusion: Services must take a more active role in supporting the development of relationships between individuals with ID, particularly those who are middle-aged or older, and people outside the service system, and in adapting to the changing capacity of ageing families.