I D C van Balkom, J Cooke, A G de Cuba, E Burkitt-Wright, C Gaasterland, M Burdeus-Olavarrieta
Of 2672 records screened, 31 studies met inclusion criteria. Narrative synthesis revealed that self-injurious behaviour, aggression and stereotypy were the most frequently studied topographies, with limited research on sleep and eating disturbances. Consistent associations emerged between communication deficits (particularly expressive speech) and both aggressive and self-injurious behaviour (three studies). Overactivity, impulsivity and repetitive behaviours were also correlates for self-injurious behaviour and aggression (five studies). Adaptive functioning was inversely associated with all major topographies, whereas comorbid autism was directly associated (two and eight studies). Other personal/medical factors (sex, age, ability level, medical issues, etc.) and contextual/psychosocial factors (social skills, mood, setting, etc.) showed inconsistent or no associations.
BACKGROUND: Individuals with severe to profound intellectual disability (ID) exhibit high support needs and significant communication impairments and may present with challenging behaviours such as aggression, self-injury and stereotypies. These behaviours can cause distress, hinder healthcare access and delivery and impair quality of life for affected individuals and caregivers. Despite their prevalence and impact, empirical research often excludes this group due to methodological and ethical challenges.
OBJECTIVE: This systematic review aimed to identify and synthesise published evidence on factors associated with challenging behaviours in individuals with severe to profound ID.
METHODS: We systematically searched six databases (Embase, Medline, Cinahl, PsycINFO, ERIC and Cochrane Library) for studies from January 2009 until March 2023. Eligible publications, original research or systematic reviews, required ≥ 25% severe/profound ID in the sample and focused on challenging behaviours plus associated factors. Quality was assessed using NIH observational study criteria.
RESULTS: Of 2672 records screened, 31 studies met inclusion criteria. Narrative synthesis revealed that self-injurious behaviour, aggression and stereotypy were the most frequently studied topographies, with limited research on sleep and eating disturbances. Consistent associations emerged between communication deficits (particularly expressive speech) and both aggressive and self-injurious behaviour (three studies). Overactivity, impulsivity and repetitive behaviours were also correlates for self-injurious behaviour and aggression (five studies). Adaptive functioning was inversely associated with all major topographies, whereas comorbid autism was directly associated (two and eight studies). Other personal/medical factors (sex, age, ability level, medical issues, etc.) and contextual/psychosocial factors (social skills, mood, setting, etc.) showed inconsistent or no associations.
DISCUSSION: Challenging behaviours in individuals with severe to profound ID are multifactorial, with communication and adaptive functioning deficits, repetitive and impulsive behaviours, and comorbid autism symptoms as key associated factors. Strengthening assessments of communicative and adaptive skills, and addressing modifiable behavioural and environmental correlates, can inform tailored interventions. However, the current evidence base is limited by methodological heterogeneity and underrepresentation, which has also impeded conducting meta-analysis or risk of bias assessment. Future studies should use longitudinal designs, syndrome-specific analyses and improved measurement of contextual variables.