Experience sampling method and the everyday experiences of adults with intellectual disability: A feasibility study

Abstract

Background: Experiences of people with intellectual disability are often reported by proxy, excluding the person's own perception. To assist people with intellectual disabilities ability to communicate their own experiences, the current study explored the feasibility, reliability and validity of experience sampling methods (ESMs) for people with intellectual disability. Method: After a training session, 19 participants carried a mobile device for 7 consecutive days, answering a survey when prompted 7 times daily. Participants were interviewed at the end of data collection. Results: Excluding incomplete entries, the response rate was 33.8%, varying by living arrangement and employment. Split-half reliability and correlations among logically linked internal experiences demonstrated strong reliability and validity. Illustration of the context of responses supported face validity. Technological and content difficulties were discussed in interviews. Conclusions: Experience sampling methods is feasible for some people with intellectual disability, providing valid and reliable information. Future research is needed to further improve feasibility.

Affective and psychotic reactivity to daily-life stress in adults with 22q11DS: a study using the experience sampling method

“…Second, although ESM has been validated in multiple studies, to our knowledge it has rarely been used in the 22q11DS population (but see [28]) and more generally in individuals with neurodevelopmental disorders (but see [46]). Even if the number of participants who had to be excluded from the final analyses (because they answered to less than a third of the emitted beeps) was acceptable, the total number of completed beeps was lower in the 22q11DS group but was not significantly associated with IQ.…”

“…Even if the number of participants who had to be excluded from the final analyses (because they answered to less than a third of the emitted beeps) was acceptable, the total number of completed beeps was lower in the 22q11DS group but was not significantly associated with IQ. Of note, a recent study by Wilson et al recently demonstrated the feasibility of the ESM technique in adults with mild to moderate intellectual disability [46]. To account for the possible effect of the cognitive impairments often seen in 22q11DS, we took extra care in explaining and practicing the PsyMateTM protocol.…”

“…Methodological studies examining in greater detail the validity of ESM and compliance with this technique (and the predictors thereof) in individuals with neurodevelopmental disorder should be conducted in the future studies. It would also be important to assess the impact of changes to the ESM assessment protocol, as described in the article by Wilson et al [46] (e.g., use of pictograms along with the text; dichotomous responses instead of responses on a Likert scale), on compliance. Also, it cannot be excluded that participants (especially in the 22q11DS given the lower response rate than in HCs) chose to avoid answering to an ESM beep in specific situations, which might introduce a response bias.…”

Characterizing daily-life social interactions in adolescents and young adults with neurodevelopmental disorders: a comparison between individuals with Autism Spectrum Disorders and 22q11.2 deletion syndrome

“…(54)) but intellectual de ciency was not an exclusion criterion since EMA can be used in populations presenting cognitive impairments (35). For HC, exclusion criteria were 1) being born preterm, 2) having a rst degree relative with any developmental disorder (siblings of participants with 22q11DS were included if the 22q11.2 deletion was con rmed to be de novo), 3) having a lifetime history of psychiatric (including neurodevelopmental disorders such as ASD), neurologic or learning impairments.…”

“…Moreover, EMA gives access to the impact of context on affective states, which deepens the link between environmental context and its in uence on internal states (31,32). Of note, this method was found reliable to assess vulnerable populations, such as individuals with intellectual disability (35) or schizophrenia (36-38). To the best of our knowledge, this technique has only been used twice in adults with 22q11DS to characterize affective and psychotic reactivity to dailylife stress (39,40).…”