Receiving Positive Behaviour Support: The Experiences of People With Intellectual Disability, Their Family, and Staff Members

Background National policy recommends intensive support teams for all areas of England for adults with intellectual disabilities who display challenging behaviour. However, to the best of our knowledge, there has not been a systematic evaluation of intensive support teams to date. Objectives Our objectives were to identify and describe the geographical distribution and characteristics of intensive support teams in England; to create a typology of intensive support teams; to investigate clinical and cost outcomes of intensive support team models and factors associated with those outcomes; and to explore professionals’, service users’ and carers’ experiences and describe the wider system context in which they operate. Design This was a two-phase mixed-methods study. In phase 1, a national survey examined the intensive support team models in operation in England. In phase 2, an observational study of adults with intellectual disabilities investigated the clinical effectiveness and cost-effectiveness of the two intensive support team models. Semistructured interviews with intensive support team managers and professionals, carers, and adults with intellectual disabilities explored their experiences of intensive support team care. In parallel, we examined service-level outcomes related to the function of intensive support teams. Setting Phase 1 included 80 intensive support teams serving 242 community intellectual disability services in England. Phase 2 included 21 intensive support teams, half of which were in the enhanced intensive support teams model and half of which were in the independent model. Participants In phase 1, a total of 73 intensive support team managers provided data. In phase 2, a total of 226 participants with intellectual disabilities from 21 intensive support teams (enhanced: teams, n = 11; participants, n = 115; independent: teams, n = 10; participants, n = 111) were enrolled in the study. A total of 42 stakeholders were interviewed. Main outcome measure The main outcome measure was the Aberrant Behaviour Checklist-Community, version 2, total score. Additional data sources were the carer and self-reported questionnaires, qualitative interviews and focus groups. Results Two intensive support team models were identified in England – enhanced and independent. Challenging behaviour at 9 months was reduced in both intensive support team models (β 3.08, 95% confidence interval –7.32 to 13.48; p = 0.561), but the observed Aberrant Behaviour Checklist-Community, version 2, score reduction appeared larger in the independent model than in the enhanced model (21% vs. 13%, respectively). No statistically significant differences were found in the secondary outcomes [Psychiatric Assessment Schedule for Adults with Developmental Disabilities Clinical Interview organic condition (odds ratio 1.09, 95% confidence interval 0.39 to 3.02), affective or neurotic disorder (odds ratio 0.91, 95% confidence interval 0.32 to 2.59), or psychotic disorder score (odds ratio 1.08, 95% confidence interval 0.21 to 5.50); risk score (β 1.12, 95% confidence interval –0.44 to 2.68); or quality of life questionnaire score (β –2.63, 95% confidence interval –5.65 to 0.40)]. Similarly, no differences were observed between models in relation to cost-effectiveness (health and social care costs mean difference £3409.95, 95% confidence interval –£9957.92 to £4039.89; societal costs mean difference –£4712.30, 95% confidence interval –£11,124.85 to £2106.36). The experiences of stakeholders did not differ between the intensive support team models, with carers and adults with intellectual disabilities valuing service accessibility, person-centred care and engagement. All stakeholders reported a range of barriers to intensive support team care. Service-level data and the operational policies from intensive support teams showed variation in organisational function and the roles of intensive support teams. The most commonly delivered intervention was positive behaviour support. Conclusions The study describes the operation of intensive support teams in England and identified two distinct models. We did not find advantages or disadvantages associated with clinical outcomes between models, nor did we find cost differences. On this basis, we recommend that local services decide which model best suits their circumstances. Limitations This was not a randomised controlled trial. It is possible that confounding factors have not been controlled for as there was no matching between intensive support teams. Last, there was no comparison with usual care. Future work There is need to develop model fidelity and investigate clinical effectiveness and cost-effectiveness in a randomised controlled evaluation of intensive support teams against treatment as usual. Study registration This study is registered as ClinicalTrials.gov NCT03586375, Integrated Research Application System (IRAS) 239820 and National Institute for Health and Care Research (NIHR) Central Portfolio Management System (CPMS) 38554. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 33. See the NIHR Journals Library website for further project information.

Inpatient admission may be necessary and effective in treatment of mental illness in people with intellectual disabilities. Although risk of mental illness is increased in this population, adaptations of inpatient treatment and ward atmosphere for this population remain sparsely described. For the current qualitative study, family members were interviewed about their experiences of ward atmosphere and mental health nursing in a specialised inpatient ward for adults with intellectual disabilities. Using thematic analysis, four themes were identified. Two concerned participants’ perceptions of the patient’s experience (patients’ therapeutic relationships with staff members, and staff attitudes and specific expertise in working with people with intellectual disabilities), while two concerned the patients’ own experiences (feeling safe and involved, and gaining new knowledge and understanding). These findings indicate that trust in staff is important for family members to feel safe, and that extra effort may be necessary to build such trust among the families of inpatients with intellectual disabilities. Developing good 1:1 therapeutic relationships with the patient, helping the patient feel safe and understood, demonstrating specific experience and skills relating to mental health care for this specific population, family involvement, and understanding inpatient treatment as a collaborative effort, may all contribute to facilitating this trust.

Accessible summary The way that people with an intellectual disability are supported is very important.The COVID‐19 virus has changed the way that staff help people with an intellectual disability.We wanted to know about those changes and whether learning about positive behavioural support (PBS) helped staff to cope with them.The main changes were that people with an intellectual disability could not go out or see family and friends as often.Staff came up with new things to do for the people they supported, and PBS learning seemed to help staff to cope. BackgroundIt has been suggested that COVID‐19 and the associated restrictions are likely to have a negative impact on the provision of positive behavioural support (PBS) to people with an intellectual disability.MethodsFifty‐eight staff, who had recently completed an accredited positive behavioural support (PBS) programme, responded to an online questionnaire, which asked them to rate the impact of COVID‐19 on factors related to PBS.ResultsParticipants reported a neutral or somewhat positive impact on all the areas measured, with the exception of the activities and quality of life of those they supported, which were somewhat negatively affected. The participants rated the learning from their PBS programme as helping them cope with COVID‐19 to some extent. Examples of positive and negative effects and ways in which PBS helped staff to cope are presented.ConclusionsMany staff developed creative solutions that allowed them to provide PBS despite the COVID‐19 restrictions. PBS learning appeared to help staff cope with the negative impact of the restrictions.

Supporting Religion and Spirituality to Enhance Quality of Life of People With Intellectual Disability: A Jewish Perspective

PurposeThe purpose of this paper was to investigate the utility of including emotional development (ED) assessment into a Positive Behaviour Support (PBS) approach in clinical practice with a patient with an intellectual disability (ID) and challenging behaviour.Design/methodology/approachInterviews were conducted with four staff involved in the care of the patient. The interviews were transcribed and analysed using thematic analysis and three reflective sessions were completed with the lead psychologist of the service.FindingsUsing thematic analysis, four themes were identified: getting everyone around the table: a collaborative approach, complementary approaches: a feedback loop, helping to make sense of the individual and ensuring a voice for service users.Research limitations/implicationsThis was a case study selected from routine clinical practice and as such generalisability may be limited. This case study was designed as an exploration of the potential benefits of incorporating ED alongside PBS for ID and provides a basis for future research.Practical implicationsThis study highlights the value of integration of ED assessment for people with ID and challenging behaviour within a healthcare team.Originality/valueThere is a lack of literature relating to ED and challenging behaviour within an ID population, particularly exploring ED within a PBS framework. This study provides a starting point for exploring how practice can be improved through incorporating ED assessment for individuals with ID and challenging behaviour.

We aimed to identify key factors in implementing and adhering to positive behaviour support (PBS), provided by frontline staff, targeting challenging behaviours of people with intellectual disabilities living in residential group homes. Using semi-structured interviews with 12 frontline staff members, we collected perspectives on a PBS training that they received. In two separate focus groups with nine frontline staff members and nine PBS trainers, we discussed factors perceived to influence PBS implementation and adherence. Hybrid coding and thematic analysis were employed. Frontline staff were positive about the content of the training and noticed improvements in challenging behaviours of the people they cared for. Key factors for implementation and adherence included organisation-wide embedding of PBS, management support, motivating staff, clear documentation, regular evaluations, and additional training sessions. This study provides valuable insights for the implementation of and adherence to frontline staff-provided PBS.

Behavioural and cognitive-behavioural interventions for outwardly directed aggressive behaviour in people with intellectual disabilities.

Support for people with intellectual disabilities and challenging behaviour in the United Kingdom is currently under much scrutiny. Positive behaviour support has been put forward as the key approach for improving services for this group of people. Drawing on both the literature and on the practice experience of organisations, arguments are made that implementing active support can reduce the need for positive behaviour support and also support the implementation of positive behaviour support where this is needed. Key features of both active support and positive behaviour support are outlined and the fit between the two explained at both a general level and for the different stages of developing and implementing positive behaviour support interventions. It is suggested that implementing active support not only provides conditions in which challenging behaviour is likely to decrease, thereby reducing the need for the implementation of positive behaviour support, but, where such implementation is necessary, it can provide a valuable foundation upon which positive behaviour support can be built. Appreciating the extent to which active support complements and in fact sets the context for successful implementation of positive behaviour support will help practitioners in this field develop a successful approach to challenging behaviour.

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Positive behavior support (PBS) developed in the 1980s and 1990s as an approach to enhance quality of life and minimize challenging behavior (Carr et al., 2002). Founded in 1999, Journal of Positive Behavior Interventions publishes both conceptual and empirical articles on PBS using a variety of methodologies (e.g., Baker-Ericzen, Stahmer, & Burns, 2007; Harvey, Baker, Horner, & Blackford, 2003; Vaughn, White, Johnston, & Dunlap, 2005), though single-subject designs are very common. One feature of JPBI that distinguishes it from other behaviorally oriented journals, including Journal of Applied Behavior Analysis, is that the vast majority of published studies are conducted in natural settings rather than in clinical settings. This is not to suggest that research in laboratories or clinical settings is not important or valued; rather, it reflects an emphasis within PBS on external validity and contextual fit of interventions. As noted by Johnston et al. (2006), PBS has been associated with a great deal of federal funding and has been written into policy at the federal level. For example, the Individuals with Disabilities Education Improvement Act of 2004 maintains provisions for behavioral interventions and supports for children with disabilities who display problem behavior. Some states have also adopted statutes prescribing PBS for persons with disabilities. Further, the Office of Special Education Programs (OSEP) of the US Department of Education has dedicated considerable funding to support PBS intervention, training, and research. Importantly, these developments did not come about as a result of campaigning by researchers within PBS, but rather because consumers (e.g., educators and parents) informed policy makers that PBS was having an important and durable impact on the lives of children. The PBS Controversy In recent years, a debate has evolved about positive behavior support and its relation to applied behavior analysis. Origins of the debate may be traced to the position that PBS is a new science, evolved from, yet different than, applied behavior analysis (ABA) (Carr et al., 2002). Although advocates of this position acknowledge the central influence of ABA in the heritage of PBS (Dunlap, 2006), they argue that the combined elements of PBS comprise a fundamentally new science to reduce challenging behavior. In response, some behavior analysts have countered that PBS is not different from ABA (Carr & Sidener, 2002). Proponents of this view posit that the procedures of PBS are largely, if not entirely, drawn from ABA and that attempts to conceptualize PBS as a new science have potentially harmful ramifications for the field of ABA. Furthering this view, other behavior analysts have described PBS as a direct threat to ABA (Johnston et al., 2006; Mulick & Butler, 2005). Accordingly, they imply that the successful dissemination of PBS as a new science will result in consumers' rejection of ABA. Moreover, because many PBS practitioners lack formal training in ABA, they argue, PBS interventions may result in deleterious effects for consumers. Diverging views have sparked debate among behavior analysts about PBS and its relationship to ABA. Although little direct evidence has been offered to support the claim that PBS is harmful to ABA, it is not unreasonable for behavior analysts to have concerns given these issues. The purpose of this paper is to allay these concerns by providing one perspective on the relationship between PBS and ABA. Unique contributions of PBS to the field of ABA are offered in conjunction with suggestions of how practitioners of PBS and ABA may work together for mutual benefit. Are PBS and ABA Different? PBS is an application of behavior analysis, which focuses on the core components of PBS identified in the literature (Anderson & Freeman, 2000; Anderson & Kincaid, 2005; Carr et al., 2002; Horner et al. …

Schools are valuable settings in that they provide children, families, educators, and community members with chances to learn, teach, and grow. These settings are able to present positive adult and peer examples, various and daily chances to have academic and social achievement, and permanent peer and adult relations promoted by social exchanges (Sugai et al., 2000).Discipline problems such as widespread alcohol, drug abuse, and bullying shown in schools in the late 1990s, focused everyone's attention on these problem behaviors (Sugai & Horner, 2002). Such problem behaviors increasing steadily in schools pushed people and policy makers to search for new solutions to prevent these problem behaviors in schools. As Skiba (2000) said, traditional methods such as zero tolerance, strict rules and punishment, and others were of no use. There was also no evidence-based research proving the positive effect of these methods on students. As Sugai and Horner noted, such systems not using positive behavior supports caused increases in the problem behaviors that needed to be reduced. In a similar way, Costenbader and Markson (1998) stated that exclusion and punishment of problem behaviors are not effective in the long term. Some types of punishment can even be rewarding and cause problem behaviors to continue. Traditional school discipline (TSDP) (Scheuermann & Hall, 2011, pp. 12-13) and PBS (Positive Behavior Support) are compared in Table 1.Sprague and Horner (2006) indicated the main points of a schoolwide system for positive behavior support are: (a) problem behavior in schools is not only an important social challenge but also an obstacle to effective learning; (b) it has not been proven that conventional tough approaches are effective; (c) a positive social culture needs to be established first through describing, teaching, and rewarding appropriate behaviors as the basis for all behavior support; (d) further behavior support processes beased on principles of behavior analysis are essential for students who need greater behavior support; (e) school staff are able not only to gather and utilize quality enhancement data systems, but also appreciate the value of those systems in terms of enhancing schools (pp. 413-427).PBS is neither a recent intervention package nor a recent behavior theory; it is rather a practice of a systems approach based on behavior to improve the capacity of schools, families, and communities with the aim of building effective settings that enhance the harmony or connection among practices validated by research and the settings where teaching and learning happen. It is focused on building and maintaining school settings that enhance behavioral outcomes for all children and youth through decreasing the effectiveness, efficiency, and relevance of problem behavior and increasing the functionality of desired behavior (Sugai et al., 2000).SWPBIS FrameworkSWPBIS is defined by the processes arranged around three major themes: Prevention, Multi-Tiered Support, and Data-based Decision Making. Contributing to the prevention of problem behavior are these principles: (a) describing and teaching basic behavioral expectations; (b) approving and awarding appropriate behavior (e.g., obeying the rules of the school, secure and considerate peer relations, and academic work/involvement); and (c) building a regular continuation of outcomes for problem behavior. Attention is focused on building a positive social atmosphere where expectations of behavior for students are greatly foreseeable, directly taught, constantly approved, and actively observed (Sprague & Horner, 2006).Homer, Todd, Lewis-Palmer, Irvin, Sugai, and Boland (2004) explained the Seven Key Features of Schoolwide Positive Behavior Support as: (a) describe 3-5 expectations for appropriate behavior schoolwide; (b) actively have all students leam the schoolwide expectations of behavior; (c) observe and approve of students when they engage in expectations of behavior; (d) correct problem behaviors by using a continuation of behavioral outcomes regularly administrated; (e) collect and use data about student behavior in order to assess and direct decision-making; (f) get leadership of schoolwide applications from a director who 1. …

This chapter describes the evolution of positive behavior interventions and supports (PBIS), including the critical role of PBIS in supporting people with intellectual and developmental disabilities in home, school, organization, and community settings. Aligned with individual, organization, and community tenets of positive psychology, and designed to achieve quality of life outcomes, PBIS can be utilized to build positive, healthy, and inclusive communities for people of all abilities. This chapter will describe how integrating PBIS and positive psychology can lead to interventions that better meet the needs of both support providers and people with intellectual and developmental disabilities.

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.

Despite the effectiveness of positive behavior support (PBS) in reducing challenging behaviors, the availability of PBS for individuals with intellectual disabilities is limited in many countries including the Netherlands. Training care staff supporting individuals with intellectual disabilities in PBS may be a way to improve the provision of PBS. We aimed to explore the preliminary effectiveness of a PBS training for staff in reducing challenging behaviors of individuals with intellectual disabilities. Using a one group, double pretest–posttest design, 24 staff members involved in the care of 11 adult individuals with intellectual disabilities and challenging behaviors participated. We assessed changes in challenging behaviors and quality of life of the individuals, in staff self‐efficacy in dealing with challenging behaviors, and in the use of restraints, using staff rated questionnaires, structured interviews, and medical files. At posttest, we found significant reductions in challenging behaviors, improved quality of life, and increased staff self‐efficacy, but no changes in the use of restraints. In contrast, no significant changes on any of the measures appeared between the two pretests. These findings suggest that a staff training in PBS may be effective for reducing challenging behaviors in individuals with intellectual disabilities.

Editorial: Introduction to Special Section on Evidence-Based Practices for Persons With Intellectual and Developmental Disabilities