Community participation of people with an intellectual disability: a review of empirical findings

Abstract

Study design A systematic review of the literature. Objectives To investigate community participation of persons with an intellectual disability (ID) as reported in empirical research studies. Method A systematic literature search was conducted for the period of 1996–2006 on PubMed, CINAHL and PSYCINFO. Search terms were derived from the International Classification of Functioning, Disability and Health. Three investigators assessed the relevance of the initially identified studies using predefined content and methodological selection criteria. Included domains of community participation were: (1) domestic life; (2) interpersonal interactions and relationships; (3) major life areas; and (4) community, civic and social life. Results Of 2936 initial hits, 23 quantitative studies eventually met the selection criteria and were included in the study. Only two studies are based on a theoretical framework. Research instruments were various and were most often ad hoc and not validated. The average number of persons in the social network of people with ID appears to be 3.1, one of them usually being a professional service staff member. People with ID are 3–4 times less employed than non‐disabled peers; they are less likely to be employed competitively and are more likely to work in sheltered workshops or in segregated settings than those with other disabilities. People with ID are less likely to be involved in community groups, and leisure activities are mostly solitary and passive in nature. Most of the people with ID had been accompanied in an activity by training/therapeutic staff. Conclusion It can be concluded that on the basis of empirical evidence, within the time frame of this literature search, little is known about community participation of people with ID. Many researchers did not clearly define community participation and were concerned with limited areas of community participation; research is seldom based on a theoretical framework. Most studies focus on people with mild ID, and there are few reports of the subjects' sample. However, one conclusion can consistently be drawn from the review: people with ID living in community settings participate more than people living in a segregated setting, but their participation level is still much lower than non‐disabled and other disability groups.