Authors' objectives: There is some evidence to support approaches to reduce restrictive practices in settings for people with a learning disability who may also have a diagnosis of autism or mental health problems. However, there is a significant knowledge gap in how and why such approaches work and in what contexts. The human and societal burden linked to the use of restrictive practices (RP), for example, restraint, seclusion and long-term segregation on people with a learning disability (LD), autism and mental health comorbidities is an issue which can no longer be silenced and needs urgent attention. While there is a major drive in mental health settings to consider these practices a treatment failure, the same is not true of settings more broadly where those with LDs are being cared for. Furthermore, while some evidence supports the use of various approaches to reduce RP, there is a knowledge gap in how and why such approaches might work in varied environments. In this report, the term ‘people with learning disabilities’ is used to refer to people in healthcare settings, that is NHS and independent sector, who have a primary diagnosis of a LD and may also have a diagnosis of autism and/or mental health problems. To conduct a realist review to understand what works, for whom, under what circumstances to prevent and reduce the use of RP on adults with a LD, autism and mental health comorbidities in NHS and independent sector settings; and To coproduce pragmatic recommendations with people with lived experience and their carers, policy-makers, practitioners and experts in the field to improve evidence and inform policy and practice.

Authors' results and conclusions: A total of 53 articles were included, after screening 14,383 articles. In line with realist methods, eight context–mechanism–outcome configurations and an overarching programme theory were used to explain the why and how of preventing and reducing the use of restrictive practices for people with a learning disability. Restrictive practices commonly occur when people with a learning disability, who display behaviour that can harm or who experience communication difficulties, are detained in environments that are unsuitable for their needs, including mental health hospitals. Furthermore, they happen when staff are inadequately trained, lack person-centred values, struggle to regulate their emotions and display limited communication skills. Restrictive practices happen where there is a lack of adequate staffing, a negative organisational culture, and where they are accepted as the ‘norm’. Drawing on these findings, we set out recommendations to include positive risk-taking, greater involvement for families and carers, and targeted training for staff. Organisations need to recognise overuse of restrictive practices and using coproduction and leadership within the organisation to implement change. This review shows that solutions for reducing restrictive practices exist, but that targeted frameworks are lacking and resources to support the implementation of evidence-based strategies in this population and related settings are compromised. More research is needed on how approaches shown to be effective in other settings such as mental health could be tailored for people with learning disability. Furthermore, more research regarding carers’ roles is warranted. Key findings This realist review incorporated both primary and secondary data, moving beyond peer-reviewed literature, to unpick why/how approaches used to prevent or reduce RP for people with a diagnosis of a LD who may also have a diagnosis of autism and/or mental health problems might work. Eight CMOCs were formulated and framed within three theory areas/stakeholder groups: people with lived experiences/’the person’ and their carers staff the organisation. Substantive theories were also explored to understand why certain factors are important in reducing the use of RP, for example, self-determination theory and the patient-centred care model (relates to ‘the person’); the cognitive appraisal model; the Six Core Strategies, the positive and proactive care model, the high and intensive care model and self-leadership (related to ‘the organisation’). This then led to the evolution of the overarching programme theory that explains the whys and hows of preventing and reducing the use of RP for this group of people. This overarching programme theory indicates that while there are interventions that might work in mental health settings (‘what works?’), the ‘who?’ – people with LDs – is a vital consideration for this to work. Interventions are not always appropriately targeted or tailored for this population; staff are not adequately trained and supported; people lack a voice and the autonomy to enable them to contribute to their care planning and improve their well-being and quality of life (with the help of their loved ones/families, where needed); and organisations fail to recognise these shortfalls. While the circumstances/settings (‘in what context?’) in which these failures occur are implicit, they are equally important in recognising where the change needs to start – in recognising that RP happen in the context of people with LD who are still currently detained in settings/environments that are unsuitable for their needs, especially mental health hospitals. And they happen in the context of a lack of positive organisational culture, where these practices are used and accepted as the ‘norm’. Findings of this review indicate that there are eight CMOCs which reflect tailored interventions needed to address challenges in the following areas: individualised care planning (including autonomy and competency for people with LD/autism) communication and person-centred approaches stress reduction workforce development/training reflection and reconnection (including debriefing) care delivery reorganisation appropriate staffing levels and mix; and invested organisations. This review highlights that settings providing care for people with a LD are complex care environments, and thus reducing the use of RP is likely to require complex interventions, involving different stakeholders and approaches as our programme theory suggests. Organisations, staff and person-centred level changes need long-term investment. These findings point to a number of implications for how best to support practitioners and organisations to reduce RP with and for those who are the most vulnerable in society. While significant work is still needed for systemic transformation, we cannot lose sight of those stuck in the harmful and distressing cycle of inadequate and inappropriate care in services failing to meet their needs. Some are subjected to RP every 15 minutes with no care plans to reintegrate them back into the community. ‘People feel stuck in the system […] The focus must be on meeting people’s individual needs. We need to move onto ensuring services fit around people rather than trying to fit people into services that can’t meet their needs.’ (How CQC Identifies and Responds to Closed Cultures. 2022. URL: How CQC identifies and responds to closed cultures – Care Quality Commission).

Authors' recommendations: Nine key recommendations/suggestions for improvement were co-created as part of this review, grouped by the three theory areas/stakeholder groups identified. People with lived experience Individualised care planning Care plans, that is positive behaviour support plans should include appropriate interventions according to the person’s needs and personal stressors.

Authors' methods: The review followed a realist approach. This approach was chosen to understand the mechanisms by which approaches to prevent and reduce the use of restrictive practices work. The review adhered to current Realist and Meta Narrative Evidence Syntheses: Evolving Standards quality and publication standards. Applied Social Sciences Index and Abstracts (ProQuest), Cumulative Index to Nursing and Allied Health Literature (EBSCO), MEDLINE (Ovid), PsycInfo (Ovid), EMBASE (Ovid) and Web of Science Core Collection and stakeholder consultations. Four main steps were followed: (1) locating existing theories, (2) searching for evidence, (3) extracting and organising data and (4) synthesising the evidence and drawing conclusions. In Steps 1 and 4, the views of stakeholders (academics, key experts, practitioners, people with lived experiences, carers) supplemented systematic searches in electronic databases, supporting the interpretation of results and making recommendations. Many of the papers reviewed were not directly related to people with learning disability, therefore there is a clear need for greater research in this area. Primary research from focus groups has been used to highlight issues and compliment the limited evidence base. While it is recognised that commissioning individualised community approaches is a possible way to reduce the use of restrictive practices, this was beyond the scope of this review. Design The study followed a realist approach to evidence synthesis, including four main steps: (1) locating existing theories, (2) searching for evidence and selecting papers, (3) extracting and organising data and (4) synthesising the evidence and drawing conclusions, including coproducing recommendations. The views of stakeholders (academics, practitioners, people with lived experiences, carers) were captured to supplement systematic searches of the literature, develop theories, support the interpretation of results and co-develop recommendations. The review adhered to current Realist And MEta-narrative Evidence Syntheses: Evolving Standards (RAMESES) quality and publication standards (Wong G, Westhorp G, Pawson R, Greenhalgh T. Realist synthesis. RAMESES training materials. BMC Med 2013:61–14). Secondary data from existing literature (scoping review, evidence synthesis including 53 articles and supplementary searches). Feedback from 13 consultation workshops with 105 stakeholders, for example, academics, practitioners, people with lived experience and their carers/advocates, policy-makers (13 workshops with 105 stakeholders). Primary data from 4 focus groups with 22 carers/family members of people with lived experience.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR129524

Year Published: 2025

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/PGAS1755

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: United Kingdom

DOI: 10.3310/PGAS1755

Organisation Name: NIHR Health and Social Care Delivery Program

Contact Name: Rhiannon Miller

Contact Email: rhiannon.m@prepress-projects.co.uk