Challenging behaviours: Views and preferences of people with intellectual disabilities

Abstract

BackgroundChallenging behaviour is a common problem among people with ID and in services for people with ID. This paper aims to provide an overview of the views and preferences of people with ID on challenging behaviour.MethodSemi‐structured interviews were conducted with thirteen adults with mild to moderate ID and seven proxies (family or close associates of adults with ID who were unable to communicate and/or with severe or profound ID) in the Netherlands. The interviews were audio‐recorded, transcribed and analysed thematically.ResultsPeople with ID and (a history of) challenging behaviour have clear views and preferences on factors related to challenging behaviour, assessments, non‐pharmacological and pharmacological interventions and health professionals’ approach.ConclusionsThe identified views and preferences of people with ID are not always in accordance with current procedures and treatments for challenging behaviour and should be included in future care processes and research.

The association between challenging behaviour and symptoms of post‐traumatic stress disorder in people with intellectual disabilities: a Bayesian mediation analysis approach

“…Inability to handle emotions has been mentioned as a subjective cause of CB by people with ID (Wolkorte et al . ). Moreover, emotional dysregulation is a symptom of complex PTSD (World Health Organisation ).…”

“…The people surveyed related CB to lack of structure and clarity in their daily life, others placing too much demand on them and inability to cope with emotions (Wolkorte et al . ). Furthermore, previous literature has emphasised considering environmental and psychological factors such as recent life events as potential triggers of CB (Thakker et al .…”

Case study: identification of anxiety and subsequent intervention in an adolescent male with autism, severe intellectual disability and self-injurious behaviour

“…(7) Intolerance of uncertainty seems to contribute in the development of anxiety disorder in individuals with ASD as well as in others (Joyce et al 2017, Boulter et al 2014, Keen et al 2019, Baribeau et al 2020, and has been the target for recently developed interventions for anxiety in ASD (Rodgers et al 2018(Rodgers et al , 2017. Intolerance of uncertainty has also been reported by individuals with ASD/ID themselves to contribute to "challenging" behaviours (Wolkorte et al 2019). To minimise perceived uncertainty and increase predictability and structure for Philip, an attempt was made to re-introduce a visual schedule previously used by Philip's caregivers.…”

“…One of the atypical ways symptoms of psychiatric disorder may manifest in individuals with ASD and ID is as "challenging" behaviours, including self-injurious behaviours (SIB) (Rittmannsberger et al 2020, Painter et al 2018, Bitsika et al 2016, Rzepecka et al 2011. "Challenging" behaviours are complex social phenomena developing due to transactional processes between the individual and contextual/social factors (Wolkorte et al 2019, van den Bogaard et al 2019, Cooper 2016, Hemmings 2007, Emerson 2001. Studies investigating the views of people with ASD/ID have reported that a wide range of causes may contribute to these behaviours (van den Bogaard et al 2019), including lack of structure and clarity in their daily lives leading to feelings of fear and restlessness (Wolkorte et al 2019).…”

“…"Challenging" behaviours are complex social phenomena developing due to transactional processes between the individual and contextual/social factors (Wolkorte et al 2019, van den Bogaard et al 2019, Cooper 2016, Hemmings 2007, Emerson 2001. Studies investigating the views of people with ASD/ID have reported that a wide range of causes may contribute to these behaviours (van den Bogaard et al 2019), including lack of structure and clarity in their daily lives leading to feelings of fear and restlessness (Wolkorte et al 2019). However, the relationship between "challenging" behaviours and psychiatric disorder remains poorly understood (Cooper 2016).…”