Responsiveness to Self-Report Interview Questions by Adults With Intellectual and Developmental Disability

Abstract

An important line of research involves asking people with intellectual and developmental disability (IDD) to self-report their experiences and opinions. We analyzed the responsiveness of 11,391 adult users of IDD services to interview questions from Section 1 of the 2008-2009 National Core Indicators-Adult Consumer Survey (NCI-ACS). Proxy responses were not allowed for the selected questions. Overall, 62.1% of participants answered the questions and were rated by interviewers as understanding the questions and as responding consistently. Most participants responded in an all-or-none fashion, answering either all or most questions or few to none. Individuals with milder levels of IDD and with speech as their primary means of expression were more likely to answer the questions and provide a scoreable response. Interviewer ratings of interviewees' answering questions, understanding of questions, and consistent responding were each related to responsiveness.

Comparisons of self and proxy report on health‐related factors in people with intellectual disability

“…While there are some people with intellectual disabilities who are unable to self‐report in any capacity, the results of this study and other recent studies (Stancliffe, Tichá, Larson, Hewitt, & Nord, ) demonstrate that it is possible to obtain information directly from many adults with intellectual disabilities on a variety of topics. Given the results of this study, it is recommended that a concentrated effort be made in both research and practice to obtain self‐report from all people with any capacity for communication.…”

The Social‐Emotional Well‐Being of Children of Mothers with Intellectual Impairment: A Population‐Based Analysis

“…Stancliffe et al . ). Fourthly, findings cannot be generalized to children of mothers with intellectual impairment who speak a language other than English at home, as these mothers were excluded from the analysis.…”

“…However, there is good evidence that adults with intellectual disabilities and especially those with less severe intellectual disabilities can be reliable informants (e.g. Stancliffe et al 2014). Fourthly, findings cannot be generalized to children of mothers with intellectual impairment who speak a language other than English at home, as these mothers were excluded from the analysis.…”

Differentiating care for persons with mild intellectual disability or borderline intellectual functioning: a Delphi study on the opinions of primary and professional caregivers and scientists

“…According to Stancliffe et al [17] relevant information can be directly obtained from people with ID on a variety of topics by the use of self-reports. The outcome of self and proxy-report regarding health-related issues can significantly vary [18].…”

“…The Delphi method however, is an iterative multistage process, using questionnaires, designed to transfer opinions into group consensus [16]. The Delphi method is not adapted to the cognitive and adaptive functioning of persons with MID or BIF and could lead to barriers in communication [17]. Therefore, primary caregivers served as a proxy source for information.…”