Persons with intellectual disabilities (ID) may have difficulties providing reliable and valid accounts of their personal experiences through self-report measures. The aim of the current study was to systematically review the peer-reviewed research literature on the adaptations needed to develop “ID-inclusive” self-report measures. A search of PsycINFO, PubMed, Web of Science, and Google Scholar identified 49 studies that met inclusion criteria. A GRADE-CERQual assessment was performed to determine the level of confidence in the review findings. One hundred sixty-one recommendations for the development of “ID-inclusive” self-report measures were extracted from 49 included studies. Recommendations were presented in a GRADE-CERQual Summary of Findings table, according to a five-stage model of instrument development. This review offers much-needed practical guidance for clinicians and researchers on how to develop “ID-inclusive” self-report measures. Recommendations for future research about self-report instrument development for use with people with ID are presented.
Stress has a major negative impact on the development of psychopathology and contributes to the onset of adverse physical conditions. Timely recognition and monitoring of stress-related problems are therefore important, especially in client populations that are more vulnerable to stress, such as people with mild intellectual disabilities (MID). Recent research on the use of physiological measures to assess stress levels emphasize that, in addition to these measures, self-report instruments are necessary to gain insight into the individual perception and impact of stress on daily life. However, there is no current overview of self-report stress measures that focus on the experience of stress in the present moment or in daily life. To provide an overview of the existing self-report stress measures for clinicians and researchers, a scoping review was conducted. In addition, to advise clinical professionals on the use of self-report measures of stress for people with MID, the results of an expert consultation were used to refine the preliminary findings. A systematic scoping literature search resulted in a total of 13 self-reported stress measures that met the final inclusion criteria, of which three were developed specifically for assessing stress in adults with MID (GAS-ID, LI, and SAS-ID). For each included self-report stress measure, the psychometric quality, assessment procedure, and suitability for adults with MID were reported. These were supplemented by the findings from the expert consultation. Implications for clinical practice on the use of self-report stress measures, particularly for people with MID, are discussed. Recommendations for future research and development are given.
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