Distress and challenging behavior in people with profound or severe intellectual disability and complex needs: Assessment of causes and evaluation of intervention outcomes

Oliver, Chris; Ellis, Katherine; Agar, Georgie; Bissell, Stacey; Chung, Justin Cheuk Yin; Crawford, Hayley; Pearson, Effie; Wade, Kelly; Waite, Jane; Allen, Debbie; Deeprose, Lucy; Edwards, Georgina; Jenner, Lauren; Kearney, Breanne; Shelley, Lauren; Smith, Kayla; Trower, Hayley; Adams, Dawn; Daniel, Louise; Groves, Laura; Heald, Mary; Moss, Jo; Richards, Caroline; Royston, Rachel; Tarver, Joanne; Welham, Alice; Wilde, Lucy and Woodcock, Kate (2022). Distress and challenging behavior in people with profound or severe intellectual disability and complex needs: Assessment of causes and evaluation of intervention outcomes. In: Esbensen, Anna J. and Schworer, Emily K. eds. International Review of Research in Developmental Disabilities, Volume 62. Academic Press, pp. 109–189.

DOI: https://doi.org/10.1016/bs.irrdd.2022.05.004

Abstract

Previously, we have proposed that there are nine domains that warrant assessment when intervening to decrease challenging behavior and/or increase well-being in people with profound or severe intellectual disability and complex needs. These domains are: pain and discomfort, sensory sensitivity, anxiety and low mood, sleep, emotional dysregulation, cognitive difference, learned or functional behaviors, and expressive communication. In this article we: (1) identify specific challenging behaviors that might be influenced by these domains, (2) describe the relationship between these domains and the specified challenging behaviors, (3) identify assessments for each domain and (4) describe interactions between the domains. Our aim in this article is to provide practitioners with a framework for assessment and to stimulate debate about the domains that are demonstrably important when considering challenging behavior and well-being in people with profound or severe intellectual disability and complex needs.

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