Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa

Abstract

Background: Picture My Participation (PmP) is a promising instrument for measuring the participation in everyday situations of children with intellectual disability (ID), particularly in low-and middle-income countries. Aim: To explore test-retest reliability of PmP by comparing two repeated measurements of children with ID in an urban context in South Africa. Methods: A picture-supported interview with 31 children with ID, aged 7-17 years, was conducted twice, two weeks apart. The children rated their participation, operationalised as attendance and involvement, in 20 everyday activities. Analyses were completed for total scores, for the four subcomponents and at item level. Results: Test-retest agreement at an item level for both attendance and involvement showed slight/fair agreement for most activities (Kappa ¼ 0.01-0.40), and moderate agreement for some activities (Kappa ¼ 0.41-0.60). Moderate agreement was shown for the total scale and at component level (ICC ¼ 0.5-0.75), except for (firstly) attendance of and involvement in 'Family Activities' (ICC ¼ 0.26 for attendance, 0.33 for involvement), and (secondly) involvement in 'Personal Activities' (ICC ¼ 0.33). Conclusion:The result indicates that PmP can reliably be used at component level and as a screening tool for intervention planning to identify participation and participation restrictions in children with ID.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

“…17,24 Third, despite research highlighting the ability of youth to provide input based on personal perspectives and lived experience, [25][26][27] youth, in general, are often viewed from a deficit-based perspective as risky, problematic, 28,29 and lacking in capacity. 30 In sum, this means that youth with severe communication disabilities face greater barriers to participation in research than their typically developing peers 11,17 and are often under-valued by researchers for their role in research. 21 However, from a perspective of rights and participation, efforts should be made to enhance their involvement in health research.…”

“…This development is of importance for a variety of stakeholders. However, it is of utmost pertinence for youth with severe disabilities, including youth who use augmentative and alternative communication (AAC) to overcome severe communication disabilities 11,12 . Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research 11–13 .…”

“…However, it is of utmost pertinence for youth with severe disabilities, including youth who use augmentative and alternative communication (AAC) to overcome severe communication disabilities 11,12 . Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research 11–13 . Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted 12,14 .…”

“… 11 , 12 Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research. 11 , 12 , 13 Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted. 12 , 14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research.…”

Structural validity and internal consistency of Picture My Participation: A measure for children with disability

“…Picture My Participation (PMP) is a self-report instrument that was specifically designed to capture the two aspects of participation, namely, attendance and perceived involvement in children and youth with mild ID in 20 different activities related to home, social life and community (Arvidsson et al 2020;Bolton et al 2020). The items were selected by reviewing existing participation measures, Participation and Environment Measure for Children and Youth (PEM-CY), Children's Assessment of Participation and Enjoyment and Preferences for Activities of Kids (CAPE) and matching items to the UN Convention of Children's Rights (Khetani et al 2014;King et al 2004;Mandich et al 2004).…”