Abstract
Objectives
Restrictive practices (RP) include any practice or intervention that infringes on the rights and freedom of movement of people with disability, including those with neurodevelopmental disorders (NDD). The use of RP is inconsistent with the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The objective of this systematic review was to estimate the use of RP internationally and identify factors associated with RP use.
Methods
Six electronic databases alongside a comprehensive online search were conducted for literature up to 12th December 2022. This systematic review included any publication published within the past 18 years that reported the rate of RP in at least 250 people in residential, community, and hospital settings who had a NDD.
Results
Twenty publications reporting thirty datasets were included in this review. Sample sizes ranged from 268 to 107,392. Overall rates of RP ranged from 6% to 78% across different timeframes and populations. Chemical restraint was the most commonly reported RP, with 12 of 20 publications (60%) reporting rates across one or more timeframes. Higher prevalence of RP were found in populations with higher reported mental illness and behaviors of concern.
Conclusion
The very considerable differences between publications and limited data means that the rates of RP are variable. The high variability appears to be attributable to methodological differences. Requiring the reporting of RP through legislation is one mechanism that can support better monitoring of RP and ultimately ensure progress is being made towards CRPD obligations to uphold human rights.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ali, A., Blickwedel, J., & Hassiotis, A. (2014). Interventions for challenging behaviour in intellectual disability. Advances in Psychiatric Treatment: the Royal College of Psychiatrists’ Journal of Continuing Professional Development, 20(3), 184–192. https://doi.org/10.1192/apt.bp.113.011577
Allen, D., Lowe, K., Baker, P., Dench, C., Hawkins, S., Jones, E., & James, W. (2011). Assessing the effectiveness of positive behavioural support: The P-CPO project. International Journal of Positive Behavioural Support, 1(1), 14–23.
Allen, D., Lowe, K., Brophy, S., & Moore, K. (2009). Predictors of restrictive reactive strategy use in people with challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 22(2), 159–168. https://doi.org/10.1111/j.1468-3148.2008.00484.x
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). Retrieved October 11, 2023, from https://doi.org/10.1176/appi.books.9780890425787
Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 (1990). Retrieved October 11, 2023, from https://www.ada.gov/pubs/adastatute08.htm
Beghi, M., Peroni, F., Gabola, P., Rossetti, A., & Cornaggia, C. M. (2013). Prevalence and risk factors for the use of restraint in psychiatry: A systematic review. Rivista di Psichiatria, 48(1), 10–22. https://doi.org/10.1708/1228.13611
Bowring, D. L., Painter, J., & Hastings, R. P. (2019). Prevalence of challenging behaviour in adults with intellectual disabilities, correlates, and association with mental health. Current Developmental Disorders Reports, 6(4), 173–181. https://doi.org/10.1007/s40474-019-00175-9
Chan, J. (2016). Challenges to realizing the Convention on the Rights of Persons with Disabilities (CRPD) in Australia for People with Intellectual Disability and Behaviours of Concern. Psychiatry, Psychology, and Law, 23(2), 207–214. https://doi.org/10.1080/13218719.2015.1039952
Chan, J., LeBel, J., & Webber, L. (2012). The dollars and sense of restraints and seclusion. Journal of Law and Medicine, 20(1), 73–81.
Chan, J., Webber, L., & French, P. (2014). The importance of safeguarding rights and the role of legislation: the Australian perspective. In S. Karim (Ed.), A human rights perspective on reducing restrictive practices in intellectual disability and autism (pp. 53–73). BILD Publications.
Chan, J., Webber, L., & Hayward, B. (2013). Examining the use of restrictive interventions in respite services in an Australian jurisdiction. Psychiatry, Psychology and Law, 20(6), 921–931. https://doi.org/10.1080/13218719.2013.770357
Chien, C.-F., Huang, L.-C., Chang, Y.-P., Lin, C.-F., Hsu, C.-C., & Yang, Y.-H. (2022). What factors contribute to the need for physical restraint in institutionalized residents in Taiwan? PloS One, 17(11), e0276058. https://doi.org/10.1371/journal.pone.0276058
Cleaton, M. A. M., & Kirby, A. (2018). Why do we find it so hard to calculate the burden of neurodevelopmental disorders? Journal of Childhood & Developmental Disorders, 4(3), 10. https://doi.org/10.4172/2472-1786.100073
Department of Health. (2015). Mental Health Act 1983: Code of practice. Retrieved October 11, 2023, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/435512/MHA_Code_of_Practice.PDF
Department of Health and Social Care. (2019). The reduction of restrictive interventions: Principles for understanding and working towards prevention. Retrieved October 11, 2023, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/812435/reducing-the-need-for-restraint-and-restrictive-intervention.pdf
Dimopoulos, A. (2016). Issues in human rights protection of intellectually disabled persons. Taylor & Francis.
Dunbar, P., Hazelwood, E., Wang, Q., McMahon, M., Walsh, K. A., & Keyes, L. M. (2022). Incidence and type of restrictive practice use in residential disability facilities in Ireland, a cross-sectional study. Health & Social Care in the Community, 30(6), e6009–e6017. https://doi.org/10.1111/hsc.14034
Emerson, E., Kiernan, C., Alborz, A., Reeves, D., Mason, H., Swarbrick, R., et al. (2001). The prevalence of challenging behaviors: A total population study. Research in Developmental Disabilities, 22(1), 77–93. https://doi.org/10.1016/s0891-4222(00)00061-5
Feldman, M., Atkinson, L., Foti-Gervais, L., & Condillac, R. (2004). Formal versus informal interventions for challenging behaviour in persons with intellectual disabilities. Journal of Intellectual Disability Research, 48(1), 60–68. https://doi.org/10.1111/j.1365-2788.2004.00578.x
Fitton, L., & Jones, D. R. (2018). Restraint of adults with intellectual disabilities: A critical review of the prevalence and characteristics associated with its use. Journal of Intellectual Disabilities, 24(2), 268–283. https://doi.org/10.1177/1744629518778695
García-Domínguez, L., Navas, P., Verdugo, M. Á., Arias, V. B., & Gómez, L. E. (2022). Psychotropic drugs intake in people aging with intellectual disability: Prevalence and predictors. Journal of Applied Research in Intellectual Disabilities, 35(5), 1109–1118. https://doi.org/10.1111/jar.12996
Government of Canada (2014). Convention on the Rights of Persons with Disabilities: first report of Canada. Retrieved October 11, 2023, from http://www.ccdonline.ca/media/international/Convention%20on%20the%20Rights%20of%20Persons%20with%20Disabilities%20-%20First%20Report%20of%20Canada.pdf
Hastings, R. P., Allen, D., Baker, P., Gore, N. J., Hughes, J. C., McGill, P., et al. (2013). A conceptual framework for understanding why challenging behaviours occur in people with developmental disabilities. International Journal of Positive Behavioural Support, 3(2), 5–13.
Health and Social Care Information Centre. (2015). Learning disability census report. England 30 September 2015 experimental statistics. Retrieved October 11, 2023, from https://digital.nhs.uk/data-and-information/publications/statistical/learning-disabilities-census-report/learning-disability-census-report-england-30th-of-september-2015
Heyvaert, M., Saenen, L., Maes, B., & Onghena, P. (2015). Systematic review of restraint interventions for challenging behaviour among persons with intellectual disabilities: Focus on experiences. Journal of Applied Research in Intellectual Disabilities, 28(2), 61–80. https://doi.org/10.1111/jar.12095
Hong, Q. N., Pluye, P., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., et al. (2018). Mixed methods appraisal tool (MMAT), version 2018. Registration of copyright, 1148552(10).
Lawrence, D., Bagshaw, R., Stubbings, D., & Watt, A. (2022). Restrictive practices in adult secure mental health services: A scoping review. International Journal of Forensic Mental Health, 21(1), 68–88. https://doi.org/10.1080/14999013.2021.1887978
Lepping, P., Masood, B., Flammer, E., & Noorthoorn, E. (2016). Comparison of restraint data from four countries. Social Psychiatry and Psychiatric Epidemiology, 51(9), 1301–1309. https://doi.org/10.1007/s00127-016-1203-x
Luiselli, J., Sperry, J., & Magee, C. (2011). Descriptive analysis of physical restraint (protective holding) among community living adults with intellectual disability. Journal of Intellectual Disabilities, 15(2), 93–99. https://doi.org/10.1177/1744629511410831
Lundström, M., Antonsson, H., Karlsson, S., & Graneheim, U. (2011). Use of physical restraints with people with intellectual disabilities living in Sweden’s group homes. Journal of policy and practice in intellectual disabilities, 8(1), 36–41. https://doi.org/10.1111/j.1741-1130.2011.00285.x
Matson, J. L., & Boisjoli, J. A. (2009). Restraint procedures and challenging behaviours in intellectual disability: An analysis of causative factors. Journal of Applied Research in Intellectual Disabilities, 22(2), 111–117. https://doi.org/10.1111/j.1468-3148.2008.00477.x
McGill, P., Murphy, G., & Kelly-Pike, A. (2009). Frequency of use and characteristics of people with intellectual disabilities subject to physical interventions. Journal of Applied Research in intellectual Disabilities, 22, 152–158. https://doi.org/10.1111/j.1468-3148.2008.00483.x
National Disability Insurance Scheme Act. (2013). C2022C00206. Commonwealth of Australia. Retrieved October 11, 2023, from https://www.legislation.gov.au/Details/C2022C00206
National Institute of Health and Care Excellence. (2015). Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. Retrieved October 11, 2023, from https://www.nice.org.uk/guidance/ng11/resources/challenging-behaviour-and-learning-disabilities-prevention-and-interventions-for-people-with-learning-disabilities-whose-behaviour-challenges-1837266392005
NDIS Commission. (2018). National Disability Insurance Scheme Quality and Safeguards Commission. National disability insurance scheme (restrictive practices and behaviour support) rules; 2018. Retrieved October 11, 2023, from https://www.legislation.gov.au/Details/F2020C01087
O'Donoghue, E., Pogge, D., & Harvey, P. (2020). The impact of intellectual disability and autism spectrum disorder on restraint and seclusion in pre-adolescent psychiatric inpatients. Journal of Mental Health Research in Intellectual Disabilities, 13(2), 86–109. https://doi.org/10.1080/19315864.2020.1750742
Olivier-Pijpers, V., Cramm, J., & Nieboer, A. (2020). Residents’ and resident representatives’ perspectives on the influence of the organisational environment on challenging behaviour. Research in Developmental Disabilities, 100, 103629. https://doi.org/10.1016/j.ridd.2020.103629
Ramcharan, B. G. (2015). Contemporary human rights ideas: Rethinking theory and practice. Taylor & Francis.
Rehabilitation Act of 1973, Section 504, 29 U.S.C. § 794; 34 C.F.R. pt. 104 (1973)
Richardson, B., Webber, L. S., & Lambrick, F. (2019). Factors associated with long-term use of restrictive interventions. Journal of Intellectual & Developmental Disability, 45(2), 159–166. https://doi.org/10.3109/13668250.2019.1639895
Romijn, A., & Frederiks, B. J. M. (2012). Restriction on restraints in the care for people with intellectual disabilities in the Netherlands: Lessons learned from Australia, UK, and United States. Journal of Policy and Practice in Intellectual Disabilities, 9(2), 127–133. https://doi.org/10.1111/j.1741-1130.2012.00345.x
Salomon, C., Britt, H., Pollack, A., & Trollor, J. (2018). Primary care for people with an intellectual disability - What is prescribed? An analysis of medication recommendations from the BEACH dataset. BJGP Open, 2(2), bjgpopen18X101541. https://doi.org/10.3399/bjgpopen18X101541
Scheirs, J. G. M., Blok, J. B., Tolhoek, M. A., Aouat, F. E., & Glimmerveen, J. C. (2012). Client factors as predictors of restraint and seclusion in people with intellectual disability. Journal of Intellectual and Developmental Disability, 37(2), 112–120. https://doi.org/10.3109/13668250.2012.682357
SFS. (1993). 387 Act concerning support and service for persons with certain functional impairments. Retrieved October 11, 2023, from https://www.riksdagen.se/sv/dokument-lagar/dokument/svensk-forfattningssamling/lag-1993387-om-stod-och-service-till-vissa_sfs-1993-387
Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A., & Horsfall, L. (2015). Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. British Medical Journal, 351, h4326–h4326. https://doi.org/10.1136/bmj.h4326
Simó-Pinatella, D., Mumbardó-Adam, C., Alomar-Kurz, E., Sugai, G., & Simonsen, B. (2019). Prevalence of challenging behaviors exhibited by children with disabilities: Mapping the literature. Journal of Behavioral Education, 28, 323–343. https://doi.org/10.1007/s10864-019-09326-9
Steenfeldt-Kristensen, C., Jones, C. A., & Richards, C. (2020). The prevalence of self-injurious behaviour in autism: A meta-analytic study. Journal of Autism and Developmental Disorders, 50(11), 3857–3873. https://doi.org/10.1007/s10803-020-04443-1
Strout, T. D. (2010). Perspectives on the experience of being physically restrained: An integrative review of the qualitative literature. International Journal of Mental Health Nursing, 19(6), 416–427. https://doi.org/10.1111/j.1447-0349.2010.00694.x
Sturmey, P. (2009). Restraint, seclusion and PRN medication in English services for people with learning disabilities administered by the national health service: An analysis of the 2007 national audit survey. Journal of Applied Research in Intellectual Disabilities, 22(2), 140–144. https://doi.org/10.1111/j.1468-3148.2008.00481.x
U.S., Department of Education, Office for Civil Rights. (2020). 2017-2018 Civil Rights Data Collection. The use of restraint and seclusion on children with disabilities in K-12 schools. Retrieved October 11, 2023, from https://www2.ed.gov/about/offices/list/ocr/docs/restraint-and-seclusion.pdf
UK Department of Health and Social Care. (2019). Reducing the need for restraint and restrictive intervention: Children and young people with learning disabilities, autistic spectrum conditions and mental health difficulties in health and social care services and special education settings. Retrieved October 11, 2023, from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/812435/reducing-the-need-for-restraint-and-restrictive-intervention.pdf
United Nations (2006). United Nations convention on the rights of persons with disability. Retrieved October 11, 2023, from https://www.un.org/disabilities/documents/convention/convention_accessible_pdf.pdf
United Nations (2008). Torture and other cruel, inhuman or degrading treatment or punishment: Note by the Secretary-General, UN GAOR, 63rd Sess., Provisional Agenda item 67(a), 69, UN Doc A/63/175. Retrieved October 11, 2023, from https://immigrantjustice.org/sites/default/files/2011_08%2520United%2520Nations%2520Report%2520on%2520Solitary%2520Confinement.pdf
United Nations (2022). Convention on the rights of persons with disability (CRPD). Retrieved October 11, 2023, from https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
Webber, L. S., Lambrick, F., Donley, M., Buchholtz, M., Chan, J. B., Carracher, R., & Patel, G. (2010). Restraint and seclusion of people on compulsory treatment orders in Victoria, Australia in 2008–2009. Psychiatry, Psychology and Law, 17(4), 562–573. https://doi.org/10.1080/13218719.2010.498770
Webber, L. S., McVilly, K., & Chan, J. (2011). Restrictive interventions for people with a disability exhibiting challenging behaviours: Analysis of a population database. Journal of Applied Research in Intellectual Disabilities, 24(6), 495–507. https://doi.org/10.1111/j.1468-3148.2011.00635.x
Webber, L. S., Richardson, B., White, K. L., Fitzpatrick, P., McVilly, K., & Forster, S. (2019). Factors associated with the use of mechanical restraint in disability services. Journal of Intellectual & Developmental Disability, 44(1), 116–120. https://doi.org/10.3109/13668250.2017.1310814
Westling, D. L., Trader, B. R., Smith, C. A., & Marshall, D. S. (2010). Use of restraints, seclusion, and aversive procedures on students with disabilities. Research and Practice for Persons with Severe Disabilities, 35(3-4), 116–127. https://doi.org/10.2511/rpsd.35.3-4.116
Williams, D. E., & Grossett, D. L. (2011). Reduction of restraint of people with intellectual disabilities: An organizational behavior management (OBM) approach. Research in Developmental Disabilities, 32(6), 2336–2339. https://doi.org/10.1016/j.ridd.2011.07.032
World Health Organization. (2019). International statistical classification of diseases and related health problems (11th ed.). Retrieved October 11, 2023, from https://icd.who.int/
Acknowledgements
We thank Julie Duong for contributions in reviewing articles for inclusion in this systematic review.
Author information
Authors and Affiliations
Contributions
BY and DG conceptualized the research objectives of this systematic review. BY completed the writing of the original draft, and MJ and DG contributed to the review and editing of the manuscript. BY and TW assessed the quality of the studies. DG and JC read and approved the final manuscript.
Corresponding author
Ethics declarations
Conflict of Interest
BY, JC, TW, and DG are employed by the NDIS Quality and Safeguards Commission. Author MJ is employed by the Australia Government Department of Health and Aged Care. No other potential conflict.
Ethical Approval
This is not applicable.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Younan, B., Jorgensen, M., Chan, J. et al. Restrictive Practice Use in People with Neurodevelopmental Disorders: A Systematic Review. Adv Neurodev Disord 8, 122–140 (2024). https://doi.org/10.1007/s41252-023-00367-w
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s41252-023-00367-w