Eliciting perceptions of satisfaction with services and supports from persons with intellectual disability and developmental disabilities: a review of the literature.

BACKGROUND

Assessing the perceptions of individuals with intellectual disability (ID) and developmental disabilities (DD) is an essential part of evaluating and planning services and an important component of respect for self-direction and autonomy. It can be difficult, however, to assess satisfaction in such a way that individuals with disabilities' actual perceptions of satisfaction are accurately represented because of intellectual and communication difficulties they may have, the restricted range and nature of service systems, and the limitations of strategies used by some researchers.

METHOD

The purpose of this literature review was to systematically examine research studies designed to solicit personal satisfaction information from individuals with ID and DD. We reviewed 29 studies that met inclusion criteria to determine (1) who were participants in the studies, (2) what processes researchers used to obtain opinions and perspectives of persons with ID and DD, and (3) how researchers ensured the credibility, accuracy and voluntariness of participants' responses.

RESULTS

Findings revealed that most of the research participants had ID with higher IQs and limited needs for supports. Researchers utilised a variety of processes to elicit perceptions of satisfaction. Most studies employed individual interviews; researchers addressed comprehensibility of questions in a number of ways (e.g. use of visuals, adjusting wording of questions, providing clear examples). Few studies reported training interviewers or taking into account participants' primary language or cultural background. No studies reported educating participants about how to understand the satisfaction information data or how to use it in advocating for more appropriate supports.

CONCLUSIONS

Assessing the satisfaction with supports and services of individuals with ID and DD is complex particularly for persons with extensive support needs. Continued research using varied conceptual frameworks and new technologies is needed. Also helpful will be teaching persons with disabilities about the assessment process and how to use its results.