Development and preliminary validation of the Self-Awareness Situation-Based Observation Lists for children with Profound Intellectual and Multiple Disabilities

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.

Keywords: Ecological self-awareness; Profound intellectual and multiple disabilities; Reliability; Self-Awareness Situation-Based Observation List for children with Profound Intellectual and Multiple Disabilities (SAOL-PIMD); Social validity.