{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T02:04:12Z","timestamp":1790215452529,"version":"4.1.0"},"reference-count":63,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T00:00:00Z","timestamp":1790121600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T00:00:00Z","timestamp":1790121600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>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\u2010injury 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This systematic review aimed to identify and synthesise published evidence on factors associated with challenging behaviours in individuals with severe to profound ID.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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 \u2265\u200925% severe\/profound ID in the sample and focused on challenging behaviours plus associated factors. Quality was assessed using NIH observational study criteria.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of 2672 records screened, 31 studies met inclusion criteria. Narrative synthesis revealed that self\u2010injurious 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\u2010injurious behaviour (three studies). Overactivity, impulsivity and repetitive behaviours were also correlates for self\u2010injurious 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>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\u2010analysis or risk of bias assessment. Future studies should use longitudinal designs, syndrome\u2010specific analyses and improved measurement of contextual variables.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jir.70178","type":"journal-article","created":{"date-parts":[[2026,9,24]],"date-time":"2026-09-24T01:45:13Z","timestamp":1790214313000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Factors Associated With Challenging Behaviour in People With Severe\u2010Profound Intellectual Disabilities: A Systematic Review"],"prefix":"10.1111","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2967-0708","authenticated-orcid":false,"given":"I. D. C.","family":"van Balkom","sequence":"first","affiliation":[{"name":"University of Groningen  Groningen the Netherlands"},{"name":"Rob Giel Research Centre, Department of Psychiatry University Medical Center Groningen  Groningen the Netherlands"},{"name":"Trajectum  Zwolle the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6832-3998","authenticated-orcid":false,"given":"J.","family":"Cooke","sequence":"additional","affiliation":[{"name":"Department of Psychology, School of Health, Medicine and Life Sciences University of Hertfordshire  Hatfield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-4365-661X","authenticated-orcid":false,"given":"A. G.","family":"de Cuba","sequence":"additional","affiliation":[{"name":"Jonx, Department of (Youth) Mental Health and Autism Lentis Psychiatric Institute  Groningen the Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2987-8103","authenticated-orcid":false,"given":"E.","family":"Burkitt\u2010Wright","sequence":"additional","affiliation":[{"name":"Manchester Centre for Genomic Medicine Manchester University NHS Foundation Trust and University of Manchester  Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3501-8211","authenticated-orcid":false,"given":"C.","family":"Gaasterland","sequence":"additional","affiliation":[{"name":"Department of Clinical Epidemiology Leiden University Medical Center  Leiden the Netherlands"},{"name":"European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability ERN\u2010ITHACA, Clinical Genetics Department Robert Debr\u00e9 University Hospital  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4252-0373","authenticated-orcid":false,"given":"M.","family":"Burdeus\u2010Olavarrieta","sequence":"additional","affiliation":[{"name":"Instituto de Investigaci\u00f3n Sanitaria Gregorio Mara\u00f1\u00f3n Hospital General Universitario Gregorio Mara\u00f1\u00f3n  Madrid Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,9,23]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1016\/j.ridd.2015.08.011","article-title":"Individuals With Smith\u2010Magenis Syndrome Display Profound Neurodevelopmental Behavioral Deficiencies and Exhibit Food\u2010Related Behaviors Equivalent to Prader\u2010Willi Syndrome","volume":"47","author":"Alaimo J. 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