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Purpose: The purpose of this paper is to broaden the discussion on some of the barriers and solutions for co-production in positive behaviour support (PBS) planning as identified in the paper "Including people with intellectual disabilities in the development of their own Positive Behaviour Support Plans". Design/methodology/approach: Drawing on the literature associated with co-production in PBS planning, this commentary will reflect on the wider systems and culture needed to enable successful implementation of this way of working. Findings: Co-production in PBS planning is recommended as part of best practice guidelines. However, there is limited research in the area of co-production with regards to PBS and use of augmentative and alternative communication methods. Collaboration among speech and language therapy and PBS practitioners is an important factor for co-production to achieve the best outcomes for people with learning disabilities who display behaviours of concern. Along with identifying a range of communication tools/strategies needed for PBS assessment/planning, it also requires a whole systems approach and culture shift to ensure the necessary foundations are in place. Originality/value: Co-production in PBS planning remains an under practiced way of working. This commentary builds on the barriers and solutions identified for co-production and provides further insight into what might be needed to achieve this in health and social care settings. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disabilities are not routinely involved in the assessment of their behaviours that challenge, as this is often completed by a proxy respondent and the health-care professional. This is contrary to guidance stating that everyone should be involved in the planning of their care. This paper aims to show how health-care professionals can support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the subsequent development of their own positive behaviour support (PBS) plans. Design/methodology/approach: A non-systematic review of the existing literature on improving the engagement of people with learning disabilities in health-care planning, and specifically PBS planning, was undertaken. Appropriate papers were included in this paper. Findings: There are several evidence-based methods to improve people's engagement in the assessment of their own behaviours that challenge and then the development of their PBS plans. These methods are discussed in terms of their application to supporting people to communicate and involving them in the process of developing a valid and meaningful PBS plan. This is a relatively new focus within the literature, and further research should focus on increasing engagement in the process, as well as monitoring how co-production affects PBS outcomes. Originality/value: This paper summarises some of the approaches used to support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the development of their own PBS plans. This should encourage health-care professionals to consider how to use alternative and augmentative communication strategies to facilitate co-production in their own clinical practice. [ABSTRACT FROM AUTHOR]

Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-licence use and use in combination with other medications for physical and psychiatric comorbidities, which leads to overmedication of people with ID. As support staff plays a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses, and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users' experiences to develop interventions and improve health care services. [ABSTRACT FROM AUTHOR]

Purpose: Care pathways are being increasingly used in the national health service to outline an anticipated programme of care in relation to a particular illness, condition or set of symptoms. The purpose of this paper is to inform those using the service of what they might expect within what time frame. They are designed to reduce variation in practice and allow optimal quality of care across a variety of care settings. Care pathways map out a patient's journey, providing coordination of services for users. They aim to have: "the right people, doing the right things, in the right order, at the right time, in the right place, with the right outcome". Design/methodology/approach: This paper outlines care pathways in relation to people with intellectual disabilities who present with behaviour that challenges. Findings: It is likely that many people will have a lifelong need for support, so discharge from clinical services should only be considered if it is genuinely appropriate. Reductions in a person's behaviours that challenge are likely to be a consequence of changes that have been made to the person's environment and supports. Therefore, any reductions in the level or type of support that the person receives may lead to an escalation of the behaviour again. Originality/value: Standards in relation to care pathways are presented. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on "A logic model for the implementation of a regional workforce strategy in Positive Behavioural Support". Design/methodology/approach: This commentary provides a discussion of the importance of evaluating positive behaviour support (PBS) training and key issues relating to this. This provides a springboard from which researchers/practitioners may consider these issues when designing and evaluating PBS training courses. Findings: Three main issues are explored: the necessary diversity and breadth of PBS training approaches, the outcome domains to be evaluated and wider systemic issues that may influence PBS training and evaluation of its effectiveness. Originality/value: Effective PBS implementation requires robust training. To achieve this, it will be important for the field to overcome issues relating to the evaluation of training approaches. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to evaluate the quality of information recorded in Behaviour Monitoring Charts (BMC) for Behaviours that Challenge (BtC) in dementia in an older adult inpatient dementia service in the North of England (Aim I) and to understand staff perceptions and experiences of completing BMC for BtC in dementia (Aim II). Design/methodology/approach: Descriptive statistics and graphs were used to analyse and interpret quantitative data gathered from BMC (Aim I) and Likert-scale survey responses (Aim II). Thematic analysis (Braun and Clarke, 2006) was used to analyse and interpret qualitative data collected from responses to open-ended survey questions and, separately, focus group discussions (Aim II). Findings: Analysis of the BMCs revealed that some of the data recorded relating to antecedents, behaviours and consequences lacked richness and used vague language (i.e. gave reassurance), which limited its clinical utility. Overall, participants and respondents found BMC to be problematic. For them, completing BMCs were not viewed as worthwhile, the processes that followed their completion were unclear, and they left staff feeling disempowered in the systemic hierarchy of an inpatient setting. Originality/value: Functional analysis of BMC helps identify and inform appropriately tailored interventions for BtC in dementia. Understanding how BMCs are used and how staff perceive BMC provides a unique opportunity to improve them. Improving BMC will support better functional analysis of BtC, thus allowing for more tailored interventions to meet the needs of people with dementia. [ABSTRACT FROM AUTHOR]

Background: The Draft Mental Health Bill proposes removal of both intellectual disability and autism from Section 3 of the Mental Health Act for England and Wales (MHA). This would lead to people with intellectual disability (PwID) and/or autism could not be detained beyond 28 days, in the absence of diagnosed co-occurring mental illness. Aim: To obtain views of psychiatrists working with PwID in England and Wales regarding the proposed MHA changes. This study focusses specifically on the impact on PwID. Methods: A cross-sectional online mixed methodology survey of Likert and free-text response questions was developed, to ascertain perceptions of proposed legislative changes to the MHA. A non-discriminatory exponential snowballing technique leading to non-probability sampling was used to disseminate the survey. Quantitative data was analysed using descriptive statistics, Mann-Whitney and Fisher's exact tests. Thematic analysis was conducted on free text responses. Results: A total of 82 psychiatrists (33%) from approximately 250 eligible completed the survey. Nearly two-thirds (64%) reported good awareness of the proposed changes, with over half (55%) reporting disagreement with the changes. Psychiatrists working in inpatient settings for PwID reported increased awareness of the changes, less agreement with the reforms, and increased expectations of the reforms having negative unintended consequences, compared to their peers working exclusively in the community. Consultants reported greater disagreement with the changes compared to their non-consultant peers. Qualitative analysis identified five main themes: impact on diagnosis and treatment, seeking alternative options, introducing inequities, resources, and meeting holistic care goals through the Care, Education and Treatment Reviews (CETR) process. Conclusion: Psychiatrists working with PwID report widespread disagreement with the proposed changes to the MHA for PwID, with greater levels of disagreement among those working in inpatient services. Caution with respect to the proposed changes, and monitoring of the impact of the changes if implemented, is advised. [ABSTRACT FROM AUTHOR]

Psychotropic medications are commonly prescribed among adults with intellectual disability, often in the absence of a psychiatric diagnosis. The aim of this scoping review is to provide an overview of the extent, range, and nature of the available research on medication use and practices and medication management in people with intellectual disability taking psychotropic medications for behaviours that challenge. A scoping review of research studies (qualitative, quantitative, and mixed design) and Grey Literature (English) was carried out. Databases included: Ovid MEDLINE, Embase, CINAHL, JBI Evidence Synthesis, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, PsycINFO, and Scopus. A three-step search strategy was followed, with results screened by two independent reviewers. Data was extracted independently by two reviewers using a data extraction tool with results mapped and presented using a narrative form supported by tables and diagrams to the research questions. Following the removal of duplicates, records were screened, full texts assessed, and 49 studies were included. Medication outcomes included reduced repetitive, stereotypic, and/or aggressive behaviours. High dosing/prescribing in the setting of an absent/unclear clinical indication was associated with worsening of symptoms for which psychotropics were prescribed. While psychotropics had a role in managing behaviours that challenge, reducing or discontinuing psychotropics is sometimes warranted. Study designs were frequently pragmatic resulting in small sample sizes and heterogeneous cohorts receiving different doses and combinations of medications. Access to multidisciplinary teams, guidelines, medication reviews, staff training, and enhanced roles for carers in decision-making were warranted to optimize psychotropic use. These findings can inform prescribing interventions and highlight the need for timely and comprehensive patient outcome data, especially on long-term use of high doses of psychotropics and what happens when reduce or stop prescribing these doses. Psychotropic medications are frequently prescribed for people with intellectual disabilities, often at high doses and these medications are associated with both positive and negative patient outcomes. Work to rationalize psychotropic use has been reported with interventions aiming to reduce polypharmacy or deprescribe a single psychotropic medicine. These interventions had mixed success and risk of relapse was documented in some studies. Limitations in sample size and heterogenous patient cohorts make it challenging to understand the risks and benefits associated with reducing or stopping psychotropic medicines. Patient, carer, and clinician partnerships are critical to advance medication management. [ABSTRACT FROM AUTHOR]

Experience Based Co-Design (EBCD) and co-production are interdisciplinary collaborative approaches to improve health care services by involving all stakeholders. These approaches capture the experiences of all stakeholders who come in contact with services and use experiences as evidence to promote and implement service changes. The use of psychotropic medications for behaviours that challenge (BtC) in people with intellectual disabilities (ID) is a complex issue because of its off-licence use and use in combination with other medications for physical and psychiatric co-morbidities, which leads to overmedication of people with ID. As support staff plays a pivotal role in the prescribing for people with ID, we have developed a staff training programme, SPECTROM, to help reduce overmedication. A project team developed SPECTROM under the guidance of a Programme Development Group (PDG) consisting of 21 stakeholders. The PDG analysed data from a literature review, four focus groups and a co-design event day involving 26 stakeholders. In this paper, we have presented data based on the findings from the co-design event day, primarily on the issue of support staff effectively liaising with professionals such as doctors, nurses, and other community learning disability team members. In-depth information and recommendations were proposed at the co-design event, which helped develop the draft SPECTROM. The draft was finalised after receiving feedback from 56 stakeholders. Co-production and a modified EBCD can be successfully used to create training interventions and improve health care services. More research should utilise co-production and EBCD and use service users’ experiences to develop interventions and improve health care services.

Background: Research suggests that providing staff with input in relation to Positive Behavioural Support (PBS) can have beneficial outcomes. Much of this research, however, fails to take account of systemic issues and does not include a control group. Method: We used a non‐randomised, controlled group design to evaluate accredited PBS programmes, delivered as part of a systemic, regional and workforce development approach. We compared outcomes of those attending the programmes (n = 240) with a control group (n = 54), pre‐ and post‐intervention and at 3‐months follow‐up. Results: The programme and its wider impact were rated positively. Significant intervention effects were found for staff practice and retention, but not for staff knowledge and attributions, or behaviours that challenge and quality of life of those being supported. Conclusions: The results are discussed in the context of the study limitations and restrictions resulting from the Covid‐19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Positive behavioural support (PBS) has been identified as a means of improving the quality of life and support of people with an intellectual disability. This qualitative study explored the views of service providers about a regional PBS programme, that was underpinned by a workforce development approach. Method: Semi‐structured interviews were conducted with senior staff (n = 42), from organizations which provided services to people with an intellectual disability, about their views about, and perceived impact of, the PBS programme, Data were analysed using thematic analysis. Results: Two themes were identified: "It's what PBS is about, isn't it?" emphasized the importance of the programme being systemic‐ and evidence‐based; "Macro to micro" highlighted the different points in the systems of care at which the programme was seen to impact. Conclusions: We discuss the results in the context of the study limitations. [ABSTRACT FROM AUTHOR]

Accessible summary The provision of care and support for people with learning disabilities and behaviour that challenges in England is mixed., Children and young people with learning disabilities and behaviour that challenges are likely to live within the community, while adults will be in residential care., Overall, supporting people with learning disabilities and behaviour that challenges within the community is likely to be less expensive than supporting them in residential care., Abstract Background: We describe current care arrangements in England for children, young people and adults with learning disabilities and behaviour that challenges, and estimate their comparative costs. Materials and Methods: A two-round Delphi exercise was performed in March and April 2014, followed by a costing exercise. Results: The study finds a mixed picture: participants reported that 60-87% of children, 66-88% of young people and 34-47% of adults were likely to be living within the community. Annual cost of care would range between £39 612 and £74 876 for children, between £35 235 and £52 832 for young people and between £81 478 and £94 799 for adults. Conclusion: While residential-based care may continue to be necessary for respite or for individuals with particular needs, community-based care may be an economically attractive alternative, supporting the inclusion of people with learning disabilities and behaviour that challenges within their communities, potentially at a lower cost. [ABSTRACT FROM AUTHOR]

Background In this study, we explored the extent to which the knowledge and attributions of support staff predicted their reported helping behaviour in relation to people with an intellectual disability who displayed challenging behaviour (CB), and whether emotion regulation style moderated the relationship between attributions and this helping behaviour. Method Participants ( N = 107) completed self-report measures of knowledge of the meaning and management of CB, causal attributions and behavioural response to CB, and emotion regulation style. Results Knowledge and helpful attributions were significantly correlated with reported helping behaviour; however, in a regression analysis with both predictors, only knowledge significantly contributed to the variance. No moderating effect was found for emotion regulation styles on the relationship between attributions and reported helping behaviour. Conclusion Knowledge was the only significant predictor of reported positive staff approaches in managing CB, giving some support for the provision of staff training aimed at increasing knowledge, rather than changing attributions. [ABSTRACT FROM AUTHOR]

SUMMARY: On average, 49–63% of people with intellectual disabilities and/or autism spectrum disorder (ASD) are prescribed psychotropic medications to treat psychopathology, including psychiatric illness, behaviours that challenge and the core symptoms and associated behaviours of these developmental disorders. In many cases, psychotropics, particularly antipsychotics, are used off-label without a proper indication, particularly to manage behaviours that challenge. The RCTs show moderate evidence supporting the efficacy of low-dose risperidone and some preliminary evidence for aripiprazole in treating behaviours that challenge among children with ASD and/or intellectual disabilities. The RCT-based evidence for the other psychotropics is equivocal, so no definitive conclusions can be made on their efficacy. Polypharmacy and the use of high doses of antipsychotics are prevalent in this population, leading to the risk of adverse events and drug–drug interactions. Despite various national and international guidelines, and government initiatives encouraging reduced psychotropic use, there is little evidence of this happening; on the contrary, the use of antidepressants, mood stabilisers and benzodiazepines may be increasing. A concerted multi-agency effort is urgently needed to address this significant public health concern of the overmedication of people with intellectual disabilities and/or ASD. [ABSTRACT FROM AUTHOR]