Date Presented 4/9/2016
Participation in meaningful activities is an important outcome for people with ID. Most research has focused on the frequency of participation and reducing barriers to participation. More research is needed to understand participation in terms of choice.
Primary Author and Speaker: Evan Dean
Contributing Authors: Michael Wehmeyer, Karrie Shogren
PURPOSE:
How is participation conceptualized in the intellectual disability (ID) research?
How is participation measured in the ID research?
BACKGROUND: Participation in meaningful activities is an important outcome in occupational therapy. The American Occupational Therapy Association (AOTA) has adopted the International Classification of Functioning, Disability and Health (ICF) definition of participation as “involvement in a life situation” (AOTA, 2014). Other researchers, however, have focused not only on involvement but also on other aspects, such as choice, access, inclusion, and responsibility (Hammel et al., 2008).
Meaningful participation is also an important outcome in research for people with ID. Although the term participation is used in ID literature, there has been little effort to develop a consistent definition. This research sought to understand how participation is conceptualized and measured in the ID literature.
DESIGN: We used a scoping review to systematically study the ID literature. Scoping reviews are helpful when trying to understand a broad concept because they require a systematic procedure and focus on broad, inclusive objectives (Levac, Colquhoun, & O’Brien, 2010).
PARTICIPANTS: To be included, studies had to include participants with ID. Our aim was to understand participation across the life span, so ages ranged from children to older adults.
METHOD: We searched academic databases for peer-reviewed articles within the past 10 yr whose titles contained participation. We excluded commentaries or summaries of research that were not systematic or scoping reviews; book reviews; book chapters; studies not focused on people with ID; and descriptions of programs that did not include outcome data.
ANALYSIS: One author reviewed all abstracts and removed articles that did not meet inclusion criteria. One researcher coded articles on the basis of the model of participation we chose. Another researcher coded 25% of articles to establish reliability. Definitions of codes were refined until coders reached 80% reliability.
RESULTS: The initial search yielded 110 articles. Fifty-nine articles met inclusion criteria and were coded for this study. The most common component of participation that was studied in the ID literature was access and opportunity (49 studies). The least common theme was choice (19 studies). These findings suggest that researchers mostly focus on environmental concerns with participation. Although choice was not considered in most of the studies we reviewed, it does not mean that researchers neglect choice. Rather, an extensive amount of literature has focused on supporting choice for people with ID.
DISCUSSION: Participation in the ID literature is generally conceptualized and measured in terms frequency of engagement in meaningful activities, which is consistent with the ICF model of participation. That is, more participation is better, therefore intervention focuses on reducing barriers. Little participation research focuses on choice. Future research should focus on understanding participation from more dimensions than frequency. For example, are people with ID satisfied with their level of participation in their desired occupations?
IMPACT STATEMENT: Participation is a complex construct that includes elements of doing and choice. Most research on people with ID focuses on the doing, but choice is a critical component. Occupational therapists can use this information support individual choice in participation for people with ID.
References
American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl.), S1–S48. http://dx.doi.org/10.5014/ajot.2014.682006
Hammel, J., Magasi, S., Heinemann, A., Whiteneck, G., Bogner, J., & Rodriguez, E. (2008). What does participation mean? An insider perspective from people with disabilities. Disability and Rehabilitation, 30, 1445–1460. http://dx.doi.org/10.1080/09638280701625534
Levac, D., Colquhoun, H., & O’Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5, 69. http://dx.doi.org/10.1186/1748-5908-5-69
