Background: Objective assessment of pain-related behaviours is crucial in adults with profound intellectual and multiple disabilities. No standardised pain observation instrument that specifically focuses on this target group is currently available. A previous study identified 12 pain-related behaviours in these persons. This study aimed to develop a valid and reliable instrument based on these 12 pain-related behaviours to assess pain in these adults in daily situations. Method: Videos of 91 adults with profound intellectual and multiple disabilities in potentially painful daily situations were scored using the 12 pain-related behaviour items. Mokken scale analysis was used to determine the construct validity of these items. Results: Analysis resulted in a 9-item scale (H =.46, Rho =.70), which appeared to be sample independent for the variables of sex, age and level of motor functioning. Conclusion: A scale containing 9 items (APOS-PIMD) with reasonable construct validity and sufficient reliability was developed, which can be used to measure pain in adults with profound intellectual and multiple disabilities in daily situations.
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A burden scale is described that is conceptually specific by concentrating on an assessment of different aspects of distress of care-giving burden and conceptually sensitive by distinguishing two dimensions: the relationship of the carer and the care-receiver and the limitations in the personal life of the carer. To develop a burden scale an analysis was carried out on a database of an intervention study in which 89 informal caregivers of psychogeriatric patients were interviewed twice. A principal components analysis was carried out showing two main factors that could be interpreted as the two dimensions mentioned above. Reliability analysis showed a Cronbach's alpha of 0.84 for the total care-giving burden scale (13 items) and 0.77 for both subscales (7 and 6 items), confirmed in an independent sample. An analysis of the hierarchy of items (Mokken Scale Analysis) showed a strong and moderate hierarchy for the subscales and the total scale, respectively. Finally, an analysis of construct validity showed strong correlations of care-giving burden with depression of the carer and deviant behaviour of the patient.
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AIM: To explore concurrent validity, convergent validity, interrater reliability, test-retest reliability, and Rasch model analysis of the School Participation Questionnaire (SPQ), a tool for teachers to assess personal and environmental determinants of school participation.METHOD: Teachers of children with additional support needs, including intellectual disability, autism, and learning difficulties completed measures. Data were collected using the SPQ and the Participation and Environment Measure for Children and Youth (PEM-CY). Test-retest and interrater reliability were assessed using intraclass correlation coefficients (ICCs). Internal consistency was assessed with Cronbach's alpha. Concurrent and convergent validity were explored via correlations with the PEM-CY. Further psychometrics were examined using a Rasch model.RESULTS: One hundred and eighty-seven children (136 [72.7%] male; mean age 9y [range 5y 6mo-12y 10mo, SD 2y]) were assessed by 67 teachers. Cronbach's alpha, test-retest, and interrater reliability were acceptable-excellent across each SPQ scale (alphas=0.89, 0.9, 0.94, 0.79; test-retest ICCs=0.64, 0.61, 0.78, 0.62; interrater ICCs=0.85, 0.71, 0.90, 0.81). Concurrent and convergent validity were confirmed with significant positive correlations between SPQ and PEM-CY. After Mokken and Rasch model analysis, person and item reliability were good, and unidimensionality was confirmed. Mean administration time was 8.2 minutes.INTERPRETATION: The results suggest that the SPQ is a rapid, reliable, and valid tool for assessment of participation-related indicators in schools.
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