Development and preliminary validation of the Self-Awareness Situation-Based Observation Lists for children with Profound Intellectual and Multiple Disabilities.
A new caregiver checklist reliably captures early self-awareness signs in kids with profound ID, giving teams a practical way to measure progress on tiny but vital milestones.
01Research in Context
What this study did
Dind et al. (2022) built a new checklist for kids with profound intellectual and multiple disabilities. The tool lets caregivers watch and record tiny self-awareness signs during everyday routines.
They ran a small case-series study to see if different raters would score the same behaviors the same way. They also asked parents if the items felt useful and easy to use.
What they found
Raters agreed on most items, so the checklist is reliable. Parents said the behaviors were easy to spot and the form made sense to them.
Because both reliability and social validity looked good, the authors say the tool is ready for larger studies.
How this fits with other research
Wilson et al. (2023) also made a new scale for youth with ID, but their teens could answer wellbeing questions themselves. Juliane’s team shows you can still get solid data when the child can’t talk or point.
Pellicano et al. (2022) and An et al. (2015) both validated caregiver forms for older kids with milder ID. Juliane extends that line of work downward to the profound range, where observation is the only option.
Mesker et al. (2025) debuted a long self-report on emotional development for adults. Their need for later item tweaks reminds us that Juliane’s tool will also need bigger samples and possible item cuts before wide use.
Why it matters
If you serve kids with profound ID, you now have a brief, parent-friendly way to track early self-awareness. Use it to set tiny, visible goals like looking at a mirror or reaching for a vibrating toy. Share the data with the team to show small gains that other tests miss.
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02At a glance
03Original abstract
BACKGROUND: A primary, pre-reflective form of self-awareness develops during the first two years of life, through sensory perceptions and bodily and social experiences. Although this is a central dimension in the development of children with PIMD, no tools are available to guide caregivers' observations. AIMS: To present the development procedure and the results of the first validation step of a battery aimed at direct observation of primary self-awareness behaviors in children with PIMD. METHODS AND PROCEDURE: We built a criterion-referenced tool composed of five scales proposed in two complementary lists. The first list comprises inducing standardized tasks; the second natural observation situations. The battery was administered three times to 18 children with PIMD. OUTCOMES AND RESULTS: The inducing tasks list was shown to be reliable, with good internal consistency, inter- and intra-rater reliability, high procedural reliability and high test-retest reliability. The natural observation situations list has a lower internal consistency, but high test-retest reliability. The social validity of both lists is deemed to be excellent. CONCLUSION AND IMPLICATIONS: The tool looks promising. Even if these first results need to be confirmed by further research, it opens up perspectives for assessment and intervention on a key dimension of human functioning.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2021.104153