A systematic review of the behaviours associated with depression in people with severe-profound intellectual disability.
In severe-profound ID, aggression, self-injury and sleep or appetite shifts may mean depression—but always screen for pain, autism or poor sleep first.
01Research in Context
What this study did
The team hunted for every paper that linked depression to behaviour in people with severe or profound intellectual disability. They read 16 small studies covering 551 clients across schools, hospitals and homes. No one was left out: children, adults, non-speakers and people with extra diagnoses like autism were all included.
What they found
Aggression, self-injury, screaming and sleep or appetite changes showed up again and again when clients were also rated as sad or withdrawn. Yet the proof is thin: samples were tiny, different tools were used and pain, medication or autism were rarely ruled out. Bottom line: the behaviours may flag depression, but we cannot be sure.
How this fits with other research
Keintz et al. (2011) already showed that low mood predicts later challenging behaviour in the same population. Palka Bayard de Volo et al. (2021) now adds that the same behaviours can also run backwards, hinting at hidden mood problems. Together the papers draw a two-way street: sadness can spark behaviour, and behaviour can signal sadness.
Rzepecka et al. (2011) and Einfeld et al. (1996) point to a twist: poor sleep alone drives challenging behaviour in kids with ID. C et al. remind us to ask, 'Is this depression, pain or just bad sleep?' Rule out all three before you treat.
Balboni et al. (2020) muddies the water further: among clients with severe-profound ID, those with better daily skills sometimes showed more problem behaviour. The review echoes this warning—never assume that someone who can feed or dress themselves is free of mood issues.
Why it matters
Next time you see new self-hits, food refusal or night waking, pause your behaviour plan for one day. Run a quick checklist: pain, illness, medication change, sleep quality, recent loss, signs of sadness. Track the results for a week. Only then pick your intervention. This simple pause can stop you from punishing a medical or mood problem—and may spare weeks of useless treatment.
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02At a glance
03Original abstract
The assessment of depression in people with severe to profound intellectual disability (severe-profound ID) is challenging, primarily due to inability to report internal states such as mood, feelings of worthlessness and suicidal ideation. This group also commonly presents with challenging behaviours (e.g. aggression and self-injury) with debate about whether these behaviours should be considered 'depressive equivalents' or are sensitive for, but not specific to, depression in severe-profound ID. We conducted a systematic review exploring behaviours associated with depression and low mood in individuals with severe-profound ID. The review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (2009) guidelines. Three electronic databases were searched (Embase, PsycINFO and Ovid MEDLINE), and 13 studies were included and rated for quality. Few studies were rated as having high methodological quality. Behaviours captured by standard diagnostic schemes for depression (e.g. Diagnostic and Statistical Manual of Mental Disorders and International Classification of Diseases) showed a relationship with depression in severe-profound ID, including the two core symptoms (depressed affect and anhedonia), as well as irritability, sleep disturbance, psychomotor agitation, reduced appetite and fatigue. Challenging behaviours such as aggression, self-injury, temper tantrums, screaming and disruptive behaviour were associated with depression. Challenging behaviours show a robust relationship with depression. Whilst these behaviours may suggest an underlying depression, study limitations warrant caution in labelling them as 'depressive equivalents'. These limitations include not controlling for potential confounds (autism, other affective disorders and pain) and bias associated with comparing depressed/non-depressed groups on the same behavioural criteria used to initially diagnose and separate these groups. Future studies that use depressive measures designed for ID populations, which control for confounds and which explore low mood irrespective of psychiatric diagnosis, are warranted to better delineate the behaviours associated with depression in this population (PROSPERO 2018: CRD42018103244).
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12807