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Caregivers of people with intellectual disabilities may feel overburdened in their work and experience negative psychological consequences. The purpose of this instrumental study was to determine the evidence of internal structure and reliability of the Zarit Caregiver Burden Interview scale. A total of 398 family caregivers, including women and men, participated (M = 47.33, SD = 10.44). The structure of the scale was evaluated by factor analysis and the McDonald Omega coefficient was used to estimate reliability. Sixteen models of the scale were tested, differing in number of items and factor structures. A model of 15 items and 4 dimensions (overload, competence, social relationship, and interpersonal relationship) obtained acceptable fit (χ2 = 184.72; p < 0.001; CFI = 0.95; TLI = 0.94; RMSEA = 0.055; SRMR = 0.05) and reliability coefficients above 0.70 in their dimensions. It is concluded that the Zarit scale is valid and reliable for use in caregivers of people with intellectual disabilities.

Purpose This study provides further insight into the experiences of five men who have committed sexual offences, with intellectual disabilities and have been recalled back to prison. The purpose of this paper is to increase professional knowledge to assist with improving working practices that support the reintegration of individuals convicted of sexual offences and with intellectual disabilities, back into the community. Design/methodology/approach Interview data was analysed using interpretative phenomenological analysis, to identify the key issues associated with criminal justice services. Findings The following superordinate themes were identified: “The label that sticks” and “Probation officer dependency”. Research limitations/implications The key implications of the findings were the high level of dependency individuals had on their probation officers and the impact that this relationship had on the overall experience of recall. The stigma of the label “sex offender” was also found to have a profound impact on individuals’ feelings of safety and their future progression. Originality/value Research exploring the experiences of individuals convicted for sexual offences and with intellectual disabilities, being recalled back to prison, is limited. Future recommendations of how practice could be improved to better support responsivity needs of this group and to create a more positive self-identity are discussed.

Purpose This narrative review aims to examine how trans people with intellectual disabilities are perceived and discussed in the academic literature. Design/methodology/approach A narrative review was carried out to better understand the positioning of people with intellectual disabilities who identify as trans. Findings There was a lack of clear terminology, an over medicalization of both people with intellectual disabilities and trans people and evidence that identifying with a non-conforming gender identity was seen as a problem by services. Services need to be better informed about issues around gender identity so that they are able to better support trans people with intellectual disabilities. Originality/value To the best of the authors’ knowledge, no previous literature review has focused only on trans people with intellectual disabilities.

Purpose As Clinical Psychologists working in a tertiary Intellectual Disability (ID) service in the UK, this paper aims to address the impact of Covid-19 – and the subsequent transition out of Covid-19 restrictions – on individuals with an ID, and the clinicians working alongside them. Additionally, the paper reflects upon how Covid-19 has shaped and manipulated therapeutic communities and environments. Design/methodology/approach This paper is reflective in nature and reviews current evidence associated with how people with an ID experienced the impact of Covid-19. Clinicians reflect upon their shared experience in line with this evidence. Findings This paper highlights perpetuating inequalities and injustices on people with an ID as a result of Covid-19. Further, it is indicated that that there should be consideration of how people with an intellectual disability experience transitions back to their day-to-day environments and encourages clinicians to widely consider how to shape therapeutic communities and environments. Originality/value Multiple themes have been addressed in this paper, and the reflections add to an understanding of how those individuals specifically working in, or using intellectual disability services, have experienced the Covid-19 pandemic, though a critical lens.

Purpose This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group. Design/methodology/approach The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach. Findings Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out. Social implications There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender. Originality/value There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services.

This paper is an introduction to adaptations to make cognitive behaviour therapy (CBT) more accessible to people with intellectual disabilities. It is intended to inform therapists who may work with people with intellectual disabilities in mainstream services. The paper describes adaptations that consider neuropsychological processes, such as memory, and executive functions, such as planning, problem solving and self-regulation, and identifies that these factors are not unique to people with intellectual disabilities. We describe adaptations based on a review of literature describing CBT for people with intellectual disabilities (Surley and Dagnan, 2019) and draw on clinical experience to give examples of adaptations where possible. The paper particularly emphasises the generalisability of adaptations used with people with intellectual disabilities to therapy with wider populations and suggests that CBT therapists working in mainstream services will have the skills to be able to adapt therapy for people with intellectual disabilities. Key learning aims (1) To overview the evidence base supporting the use of CBT with people with intellectual disabilities. (2) To describe the epidemiology of intellectual disability and discuss its implications for the generalisability of adaptations discussed in this paper. (3) To describe a range of adaptations to make CBT more accessible people with intellectual disabilities. (4) To consider whether such adaptations are part of the skill set of CBT therapists mainly working with people without intellectual disabilities.

Purpose. The research reveals the possibilities of psychological support and advisory support for young people with intellectual disabilities (ID) in the process of their employment and work activities in order to achieve positive dynamics in matters of their professional self–determination, painless integration into the professional community and development in the profession. Procedure and methods.The study involved young people with ID aged 18 to 32 years (N=123). The experimental technology of included employment, developed on the basis of a professional labor experiment, a case method, methods of resource and positive psychotherapy, SPT, involves differentiation of the levels of readiness for employment of persons with ID (minimum, medium, sufficient) and selection for each level of the route accompaniments, which includes the provision of psychological counseling and support: employment, protected employment and escorted employment in the open market. Results and conclusions. The introduction of the technology showed that the leverage that activates the personal resources of the readiness of young people with ID to perform work tasks is specially organized working conditions and psychological support in the experimental social enterprise "Special Assembly" in combination with group trainings and individual counseling. The results of the provision of counseling psychological assistance and psychological support was a significant increase in the number of people with a sufficient level of readiness for independent work (from 27.64% to 40.65%), the indicator of responsible attitude of employees with ID towards team members increased from 1.58% to 36.50% of respondents, anxiety about failures in work activity decreased from 2% to 33.50% of respondents, 47.61% of people with ID established communication with friends at a sufficient level. 51 people are employed in the open labor market.

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.

Purpose This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value To the best of the authors’ knowledge, this is the first paper to compare dementia assessment provision between different services in England.

Purpose The purpose of this paper is to provide a commentary on Banks et al. and sets the wider context. Design/methodology/approach It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised.

Objectives: Mental imagery is important in the development and maintenance of psychological disorders and well- being but has been neglected in people with intellectual disabilities. A detailed idiographic analysis of the lived experience of mental imagery in this population is presented. \ud Design: This qualitative study uses interpretative phenomenological analysis (IPA). It involved inclusive research methods with people with intellectual disabilities and other stakeholders (including family members, advocates, support workers and intellectual disability service managers).\ud Methods: Ten individual semi-structured interviews were conducted with people with mild–moderate intellectual disabilities. Participants were opportunistically sampled through organisations providing community services to people with intellectual disabilities in the UK. Two men and eight women (mean age 43 years) participated. Interviews were audio-recorded and analysed using IPA.\ud Results: People with intellectual disabilities are able to experience a range of rich and detailed mental images across all sensory modalities. Participants reported changes in affect based on mental imagery, and an ability to experience both spontaneous and deliberate mental images. The emotional saliency of the object of mental imagery appeared to influence participants' ability to engage with imagery. A number of adaptations make mental imagery more accessible and easier to report. The ability of people with intellectual dis-abilities to experience vivid mental imagery has important clinical implications for the use of a range of mental imagery interventions with this population.\ud Conclusions: The need to consider mental imagery interventions for this population, and how these can be adapted to ensure accessibility is a priority for people with intellectual disabilities and psychological disorders\ud

Purpose The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis. Design/methodology/approach The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources. Findings The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges. Originality/value The findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations.

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.

This narrative synthesis aims to review and collate what is known to date on the impact of culture on the experiences and identity of PWID and their families and carers. Despite findings in the general population that cultural identity affects personal identity (Schwartz et al., 2008), and that experiences of people from minoritised ethnic communities in accessing services differ from those from White communities (Moriarty, 2008) (Cabral & Smith, 2011), relatively little is known about how the identity and experiences of people from minority communities intersect with disability in both PWID and their family and carers. There is a potential ‘double discrimination’ experienced by PWID from non-White backgrounds, through the intersectionality of being non-White (Ajayi (Sotubo), 2021) (Randhawa, 2007) and potential marginalisation due to having an ID (Mencap, 2016). This may be important in terms of the direct impact on the wellbeing and identity of the PWID, but also more indirectly, where institutional racism may mean assumptions are made based on diagnostic overshadowing, with an individual’s ID considered by a professional, but not cultural adaptations; see, for example, Ali et al. (2013), who highlight how PWID may have communication difficulties when accessing physical health care due to both their need for accessible information, and a language barrier. At the time of writing, the researcher could not find a systematic review that summarised the literature on this topic to date.

Body image, defined as people’s body-related self-perceptions and self-attitudes, plays an important role in people’s eating, physical activity and weight management behaviour. Research shows that in the general population, there is a well-established relationship between increased social media usage and the negative body image. Body dissatisfaction has been found to be associated with unhealthy eating patterns and is higher with elevated body mass index yet, little is known about body image in people with intellectual disabilities (ID), despite the increased overweight and obesity prevalence rates in this population. Similarly, not much is known about how and why young people with ID use social media, even less about how this may relate to body image, despite recent data showing that young people with ID actively participate on social networking sites (SNSs). The inconclusiveness and limitedness of the literature calls for a direct exploration of social media usage and body dissatisfaction in young people with ID. The current study addresses this gap in the literature. The aims of the study are to: 1. Explore how much and what types of Social Media young people with ID use. 2. Explore the motivations for social media use in young people with ID. 3. Investigate whether social media use behaviours relate to body image and self-esteem in young people with ID, predicting those that use social media more and for social comparison-related reasons will have higher body dissatisfaction and lower self-esteem, based on the general population literature.

Purpose Research into culture within intellectual disability services, has predominantly focussed on small group homes in Australia. The current investigation aimed to explore the transferability of the dimensions of culture identified in the literature, to a residential Intellectual Disability service in the UK. The purpose of this study was to better understand the impact of informal culture upon the behaviour of direct care staff, particularly around managing behaviour that challenges. Design/methodology/approach Semi-structured interviews were conducted with direct care staff. Interview transcripts were analysed thematically using template analysis. Findings Themes regarding leadership, perceptions of managers, team functioning, and relationships between direct care staff and service users, were identified, corroborating the existing literature. Additional themes relating to being aware of the risks posed by service users, and the emotional impact of behaviour that challenges, also emerged. Originality/value To the best of the authors’ knowledge, this is the first qualitative study to explore informal culture within a community residential Intellectual Disability service in the UK.

Background: Our STORM intervention was developed for people (16 +) with intellectual disabilities to enhance their capacity to manage and resist stigma. The current study describes the adaptation of STORM for (synchronous) on-line delivery in the context of the Covid-19 pandemic. Aims: To adapt the manualised face-to-face STORM group intervention for delivery via web-based meeting platforms and to conduct an initial pilot study to consider its acceptability and feasibility. Methods and procedures: The 5-session STORM intervention was carefully adapted for online delivery. In a pilot study with four community groups (N = 22), outcome, health economics and attendance data were collected, and fidelity of delivery assessed. Focus groups with participants, and interviews with facilitators provided data on acceptability and feasibility. Outcomes and results: The intervention was adapted with minimal changes to the content required. In the pilot study, 95% of participants were retained at follow-up, 91% attended at least three of the five sessions. Outcome measure completion and fidelity were excellent, and facilitators reported implementation to be feasible. The intervention was reported to be acceptable by participants. Conclusions and implications: When provided with the necessary resources and support, people with intellectual disabilities participate actively in web-delivered group interventions.

Purpose This commentary aims to define STOMP and STAMP, describes its history and evolution and the authors’ thoughts about future directions given the lack of clear evidence base for prescribing and deprescribing psychotropic medication given for behaviour thought to be challenging. Design/methodology/approach This commentary defines the authors’ clinical experience and personal thoughts about STOMP achievements and challenges for the future delivery. Findings This commentary details STOMP development to date and highlights the potential areas for further study and research to grow understanding, professional confidence and delivery. Research limitations/implications This commentary highlights much of the currently accepted research and areas that have poor quality evidence or are of interest for future study. STOMP definition, especially of inappropriate prescribing, is key to redefining the work. Practical implications This commentary highlights the potential impact of STOMP and STAMP on prescribing rates and the need for better definition, processes and education for workforce development. There is a major need to understand the benefit of behavioural intervention to support the optimisation of medication. Originality/value This commentary builds on personal experience and current understanding to postulate considerations to further the delivery of STOMP and STAMP.

© 2020, Springer Nature Switzerland AG. This review paper reflects on the existing literature on cognitive behaviour therapy for adults, adolescents and children with intellectual disabilities. People with intellectual disabilities have high rates of comorbid mental health disorders, but low rates of accessing treatments with limited treatment options available to them. Historically, they have been excluded from cognitive-based therapies such as cognitive behaviour therapy. However, recent research has shown that people with mild to moderate intellectual disabilities do have the capacity to engage in cognitive-based interventions. The review highlights the progress that has been made in the field of adapting CBT for people with intellectual disabilities, as well as the current gaps in the literature and suggestions for future research.

Studien relaterar till PAR - Participatory Action Research - med deltagarbaserad undersokning av verksamheter for personer med psykisk utvecklingsstorning.

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.

This article hopes to offer some guidance regarding remote working with people with Intellectual Disabilities (ID) during the Covid-19 pandemic. This includes offering individual therapy, managing risk, working indirectly and in consultative capacities.

Background Diagnostic manuals provide a strict definition of the PTSD gate criterion. Research on the adequacy of this definition in people with intellectual disabilities is lacking. This study aims to test the adequacy of the gate criterion for this population. Method Fourty nine adults with mild to moderate intellectual disabilities and 43 caregivers were questioned. Traumatic events included in the gate criterion definition and adverse events going beyond it were assessed. It was tested whether adverse events affect symptoms of PTSD additionally to traumatic events. Results The current data showed ambiguous findings in self‐ and informant report. Informant data suggested an additional impact of adverse events on PTSD symptoms. Self‐report data suggested the contrary. Conclusion Adverse events seem to have an impact on externalizing behavioural symptoms, such as hyperarousal. Self‐report assessment of more specific, intrapsychic PTSD symptoms, such as intrusions and avoidance, should be addressed in future studies.

Therapeutic services for people with intellectual disabilities (ID) often follow a medicalized narrative, focusing on treatment of the individual without attending to social and political factors. ...

Purpose Mental health courts (MHCs) may enable better support for people with intellectual disabilities (ID) within the criminal justice system (CJS) but little evaluative empirical evidence is available regarding their operation. The purpose of this paper is to explore professional perceptions of the challenges of including people with ID in a targeted services court (TSC) designed for people with mental health issues and ID. Design/methodology/approach Information was gathered, via interviews and focus groups, from 46 professionals working with people with mental health issues and ID within the TSC. Data were analysed by using thematic network analysis. Findings Findings highlight the neglect and lack of inclusion of people with ID within the TSC processes, with challenges in identifying people with ID, stakeholder awareness, inconsistent adapting of practices for people with ID and information transfer underpinned by the involvement of numerous organisations with differing agendas. Research limitations/implications Although valued, development of a TSC, including people with ID, was a challenging endeavour and may reflect societal and institutional neglect of people with ID, recommendations are provided. Originality/value This study adds to the few investigations that have considered the process of including people with ID in a TSC from the perspective of those working in the CJS.

Research has drawn attention to the stigma and high rates of victimization among people with intellectual disabilities (ID) and an overlap between bias and non-bias victimization. However, studies of bias events or hate crime involving persons with ID are scarce. Using a self-report measure, we analyze lifetime bias victimization in a sample of 260 adults diagnosed with ID (age M = 41.7, SD = 12.0; 59.2% men), of whom 92 experienced bias victimization (age M = 41.2, SD = 11.9; 54.3% men), and compare the number of different types of victimization and the poly-victimization status between bias and non-bias victims. We also examine the following features: the victim, offender(s), victim–offender relationship, and location. Results show that bias victims experience a higher number of different types of victimization than non-bias victims ( M = 7.74 and 4.96, respectively; p rb=.37, ξ=.42) and are four times more likely to be poly-victims than non-bias victims (odds ratio [ OR] = 4.37; 95% CI, p

El objetivo del presente estudio fue analizar el impacto de una intervención en educación emocional en un grupo de jóvenes con discapacidad intelectual. Los participantes fueron 16 jóvenes (7 mujeres) con discapacidad intelectual ligera o moderada de edades comprendidas entre los 18 y 28 años (M =24; DT = 3,04) integrantes del programa de formación para el empleo UNINCLUV de laUniversitat de València. Se administraron el cuestionario de Inteligencia Emocional de Bar-On: versión para jóvenes (EQ-i:YV; Bar-On y Parker, 2000) y la Escala de Comportamiento Asertivo (CABS; Woods et al., 1978). El diseño del estudio fue longitudinal con pretest, intervención y postest, sin grupo control. No se observaron diferencias en las puntuaciones obtenidas por los participantes antes y después del tratamiento en las distintas dimensiones de inteligencia emocional evaluadas (intrapersonal, interpersonal, estrés, adaptabilidad, estado de ánimo). Sin embargo, sí se observó un mayor uso de estrategias asertivas y un menor uso de estrategias pasivas entre los participantes tras la intervención. Asimismo, los participantes manifestaron un elevado grado de satisfacción con el programa. Los resultados obtenidos indican la necesidad de continuar con la implementación de programas universitarios que potencien tanto la inclusión como las competencias socioemocionales de las personas con discapacidad intelectual, con el fin de mejorar la calidad de vida de este colectivo.

Purpose Narrative therapy has been suggested as particularly relevant to people with intellectual disability (ID), with group formats potentially offering additional benefits. This paper aims to critically review studies which evaluated narrative group interventions for people with ID. Design/methodology/approach The seven papers identified for review were critically appraised for their quality using a quality appraisal tool appropriate to their design, along with additional factors including adaptations made to improve accessibility. Findings The studies suggest that there may be some small benefits of narrative group therapy for those with ID. However, alongside issues limiting the studies’ evaluations, it is noted that the research paradigms used in the studies conflict with narrative approaches. Research limitations/implications The limited evidence base suggests the need for further research. The randomised controlled trial would ordinarily be seen as the gold standard for such research. However, narrative interventions may require a different approach to evaluation. Originality/value This is the first review of published literature on the evaluation of narrative therapy groups for people with ID.

Background A preponderance of behavioural symptoms is assumed to be the main difference in the manifestation of symptoms of post‐traumatic stress disorder (PTSD) in people with intellectual disability (ID). However, no study so far has assessed the relationship between challenging behaviour (CB) and PTSD. The present study aims to explore this relationship by exploring whether CB is directly related to trauma exposure or whether this relationship is mediated through core symptoms of PTSD. Methods Trauma exposure and current symptoms of PTSD were assessed in 43 adults with mild to moderate ID. Parallel versions were administered to 43 caregivers, including the Aberrant Behaviour Checklist to measure CB. Bayesian mediation analyses were conducted using self‐rated and informant‐rated data. Results The self‐report data showed no associations of CB with trauma exposure or PTSD symptoms. The association between informant‐rated trauma exposure and irritability was mediated by severity and frequency of PTSD symptoms. The associations between informant‐reported trauma exposure and the Aberrant Behaviour Checklist subscales hyperactivity and inappropriate speech were mediated by PTSD symptom severity. Conclusions The relationship between trauma exposure and CB was mediated by PTSD symptoms. PTSD core symptoms should be considered as underlying causes of CB, highlighting the necessity to explore trauma biography and symptoms of PTSD. The improvement of self‐report assessment in people with ID is an important task for future studies.

BACKGROUND People with intellectual disability experience a higher prevalence of dementia, at an earlier age, than the general population. The aim of this review was to establish the psychological interventions and outcomes for individuals with intellectual disability and dementia. METHODS A search of eight electronic databases and reference lists of all included articles was conducted using PRISMA guidelines. Data were synthesized using an integrative method. RESULTS Initial searching produced 2,331 papers. Twenty-one studies met the inclusion criteria. Interventions were deductively categorized into behavioural, systemic and therapeutic. All studies reported positive findings for individuals and for the systems which support them, but limited by methodological issues and neglect of the direct experience and impact on individuals themselves. CONCLUSIONS The findings are discussed in relation to the wider literature and evidence base. Future research should aim to adopt methodologically robust designs that are inclusive of the individual experience of people with intellectual disability.

Purpose The purpose of this paper is to provide a commentary on the article regarding online risk for people with intellectual disabilities (ID). Design/methodology/approach This commentary is a reflection based on clinical practice and a recent pilot research study. Findings How we provide information is important both online and in training to keep people safe. Practical implications Information provision needs to consider content and medium alongside the needs of the recipient. Originality/value This paper reinforces the importance of how information is provided for people with ID.

Purpose The purpose of this paper is to summarise the current state of empirical knowledge pertaining to online risk and cybercrime relating to people with intellectual disabilities (ID). Design/methodology/approach This narrative review summarises, synthesises and critically evaluates the current literature and state of knowledge and offers suggestions for extending current knowledge and practice. Findings Evidence regarding risk for people with ID is limited but growing. Existing findings highlight that: risk may increase contingent upon higher levels of sociability, loneliness, anxiety and depression, poorer insight, judgement, discrimination and ability to detect deception online and reduced experience and life opportunities; people without ID perceive high online risk for people with ID, which may lead to gatekeeping restrictions and controlling digital access; restriction may potentially impede online self-determination, participation and development by people with ID; and experience of risk may enhance awareness, independence and resilience in managing future online risk amongst people with ID. Further research work is needed in this area to enhance understanding of risk experience and effective support strategies. Originality/value This review of current knowledge has highlighted the necessity for more research to better understand the propensity for engagement in different risky online behaviours and to better inform support practices to help people with ID to manage risk whilst maintaining digital inclusion.

Mindfulness-based programs have been delivered to people with intellectual disabilities (ID) and aggressive behaviour with some success. The current study is part of a wider feasibility study, which aimed to test the adaptation of the Soles of the Feet (SoF) meditation practice to a six-session, one-to-one intervention delivered within the UK National Health Service. It was designed for adults with ID to help reduce their aggressive behaviour. Eighteen stakeholders were interviewed from three groups: (1) people with ID who took part in the intervention, (2) their supporters, and (3) therapists who delivered the intervention. Thematic analysis was used to analyse the data. The intervention had high acceptability among participants, although they reported mixed outcomes, these outcomes aligned closely with reports on effectiveness from supporters and therapists. Some people with ID and their supporters reported positive changes, such as reduced aggression, increased sociability, and higher quality of life. Some participants reported no change. Four participants and their supporters reported clear benefits from the SoF intervention. For the three that did not report benefits, this appeared to be related to whether the person with ID understood the intervention and/or were motivated to reduce their aggressive behaviour. There was also evidence of supporters needing more direct instruction on how to facilitate the SoF intervention with the person they care for. Suggestions for future research are made, and clinical implications explored.

A good evaluation of the quality of life (QoL) of young people with disability is essential to detect, monitor and report their support needs in research, and individual, institutional and policy planning. The aim of this study is to evaluate the reporters’ agreement in the assessment of the QoL of young people with Intellectual Disabilities in transition to adulthood. Self and proxy-report version of INICO-FEAPS quality of life scale was used to assess 119 students of a post-compulsory educational program, being the proxy-report informed by one of their relatives. Results show poor intraclass correlations between informants. No discrepancies were found in the global QoL. However, small discrepancies were found for some dimensions. Young people’s reports were higher for self-determination, personal development and interpersonal relationships. On the contrary, relatives’ reports were higher for rights, material and physical wellbeing. The discrepancies in global QoL assessment were not related to student’s severity, IQ, diagnosis or parent’s gender. These findings underline the importance of young people’s participation in the assessment of their QoL as well as the convenience of using both kind of informants when taking appropriate decisions in educational contexts during transition to adulthood.

Purpose Elucidating where antisocial or violent behaviour arises within the life course of individuals with intellectual disability (ID) could improve outcomes within this population, through informing services and interventions which prevent behaviours reaching a forensic threshold. The paper aims to discuss this issue. Design/methodology/approach The Historical Clinical Risk Management-20, Version 3 assessments of a cohort of 84 inpatients within a forensic ID service were analysed for this study, with a particular emphasis on items concerned with the age at which antisocial or violence first emerged. Findings For most participants, violent or antisocial behaviour was first observed in childhood or adolescence. The study also highlighted a smaller subgroup, whose problems with violence or antisocial behaviour were first observed in adulthood. Originality/value The study findings suggest that targeted services in childhood and adolescence may have a role in reducing the offending behaviour and forensic involvement of people with ID. This has implications for the service models provided for children and adolescents with ID with challenging or offending behaviour.

The level of support needed for adaptive functioning and behavioral problems of individuals with intellectual disabilities (ID) can be a source of stress for caregivers. The aim of this study was to explore the moderating role of caregivers’ age on the associations between these stressors and quality of life (QoL) of the family caregivers. As these sources of stress in people with ID can coexist, the triple interaction between stressors and age was also examined. 208 relatives (mean age = 50.98 years, SD = 12.86) of people with ID participated in the research. Participants answered a questionnaire with sociodemographic variables, measures of stressors (level of support for adaptive functioning of the people with ID and behavioral problems) and measures of QoL (WHOQOL-BREF). The association between the level of support needed for adaptive functioning and lower QoL was only significant among older relatives, whereas the association between behavioral problems and lower QoL was only significant among younger relatives. A three-way interaction between behavioral problems, level of support needed, and age indicated that the association between the level of support for adaptive functioning and QoL in older relatives was greater when there were higher levels of behavioral problems. The role of caregivers’ age in their QoL differs depending on the nature of the stressor, and an accumulation of stressors can have a particularly negative impact on older caregivers. Interventions should be adapted for caregivers of different ages and take into account the particular sources of stress they have to cope with.

Background: Mothers of people with intellectual disabilities (IDs) face exceptional challenges and may be more prone to experiencing mental ill-health compared with mothers of typically developing people. These mental ill-health problems may differ at different stages of the caregiving trajectory. However, there is no evidence synthesis on this topic. We aimed to systematically review evidence in this area and identify gaps in the existing literature.Method: Prospero registration: CRD42018088197. Medline, Embase, CINAHL and PsycINFO databases were searched. No time limits were applied. Studies were limited to English language. Inclusion criteria were studies of mothers of people with IDs that also included a comparison group of mothers of typically developing/developed children. Data were extracted from selected studies using a structured database. Study selection and quality appraisal were double rated. Where possible, meta-analyses were performed.Results: Of the retrieved articles, 32/3089 were included, of which 10 reported on anxiety, 21 on depression and 23 on other indicators of mental ill-health. Overall, previous studies reported that mothers of people with IDs experienced poorer mental health as compared with mothers of typically developing people. Meta-analyses revealed significant findings for anxiety, depression, parenting stress, emotional burden and common mental disorders, but not for somatic symptoms. However, there was a considerable heterogeneity; hence, interpretation of results should be cautious. Identified gaps included scarce research on mental ill-health of mothers of adults with IDs at different stages of the caregiving trajectory.Conclusions: There is evidence of poorer mental ill-health in mothers of people with IDs compared with mothers of typically developing people, but lack of focus on different stages of the caregiving trajectory, methodological inconsistencies between studies and lack of robust studies pose limitations. This highlights the need both for improved support for mothers of people with IDs and for further methodologically robust research.

The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome.To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities.We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour.We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6).The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

This systemic review investigates the current evidence for the effectiveness of anger and/or aggression interventions for people with intellectual disabilities (ID) in receipt of forensic mental health services. Due to the prevalence within this population of difficulties with anger and aggression, and the associated substantial individual and societal consequences, the provision of psychological interventions has become increasingly common. However, no critical synthesis of the empirical evidence relating to their effectiveness has previously been conducted. Sixteen peer-reviewed controlled trials or case series designs published between 2001 and 2016 met the inclusion criteria. The results highlight an emerging evidence base for the use of CBT in improving anger regulation, and for a range of psychological therapies in reducing aggressive behaviour. However, consistent methodological shortcomings limit the generalisability of findings and currently preclude firm conclusions on effectiveness. Recommendations are made for future research to address these shortcomings, including clearly-defined adaptations, adequately powered sample sizes, carefully designed baselines and follow-up periods. Despite the current status of evidence, the review provides an accessible and objective foundation to inform decision-making by service commissioners and clinicians providing anger and aggression interventions to people with ID.

BACKGROUND We aimed to validate the Italian version of the two parallel short forms of the Prudhoe Cognitive Function Test (s-PCFT-I) in adults and seniors with intellectual disabilities (ID) of any aetiology and level of severity. METHODS Our validation is a multicentre study attended by 211 subjects with ID, 125 male and 86 female, aged 40 years and above for people with Down syndrome and aged 50 years for people with other forms of disabilities. RESULTS The s-PCFT-I shows a wide range of scores in the absence of floor effects with minimal ceiling effects. A Cronbach's α coefficient of 0.85 and a mean inter-item correlation of 0.21 indicate high internal consistency. The tool demonstrates good agreement between testers and near excellent temporal stability with intraclass correlation coefficients respectively of 0.85 and 0.90. s-PCFT-I total scores do not differ by sex or age, while statistically significant differences are observed between people with different levels of severity of ID. Moderate to good and highly significant correlations (-0.40 to -0.66) among the s-PCFT-I total scores and subscores and the Sum of Cognitive Score of the informant-based Dementia Questionnaire for Persons with Intellectual Disabilities suggest an acceptable level of concurrent criterion validity. Cognitive decliners according to Prasher's Dementia Questionnaire for Persons with Intellectual Disabilities cut-off scores perform significantly lower on s-PCFT-I than non-decliners. CONCLUSIONS The s-PCFT-I has good psychometric properties and user friendliness and may therefore be a valuable addition to the current informant-rated tools for screening and assessment of cognition in aging people with ID.

Background: Individuals with intellectual disability (ID) are at greater risk of exposure to traumatic life events compared with the non‐ID population. Yet no study to date has examined the role of multiple traumatisation and subsequent psychopathology in people with ID. The aim of this study was to explore the association between multiple traumatisation and subsequent mental health. Methods: A preliminary cross‐sectional study involving 33 participants with DSM‐5 post‐traumatic stress disorder completed self‐report questionnaires on exposure to traumatic life events and post‐traumatic stress disorder symptoms, anxiety, depression and general distress. Results: A proportion of 42.4% of the sample reported multiple traumatisation, including exposure to life events in both childhood and adulthood. Those who reported exposure to life events in childhood and adulthood reported significantly higher risk of harm, depression and general psychological distress compared with those who reported exposure to life events only in adulthood. Conclusions: Preliminary results indicate that more severe psychopathology is associated with multiple traumatisation in childhood and adulthood compared with trauma experienced solely in adulthood.

Background The transition to adulthood is a major developmental milestone; a time of self-discovery and increased independence. For young adults (YA) with intellectual disabilities (ID), however, this period is especially challenging. The increased incidence of mental health disorders in this population, such as depression and anxiety, make this transition even more difficult, increasing caregiver burden at a time when the young adult would traditionally be gaining independence. It is not clear, however, why YA with ID are more susceptible and what factors may predict mental health symptoms. Method Potential risk and protective factors (demographic variables, coping styles, sense of hopelessness, unmet achievement of adulthood milestones, self-reflection and insight) of anxiety and depression symptoms were assessed in 55 YA with ID and a sample of age-matched controls. Results Insight was the strongest predictor of anxiety (with gender in the controls) for YA with and without ID, with increased insight predicting fewer anxiety symptoms. However, YA with ID had significantly less insight than their aged-matched counterparts and significantly higher levels of anxiety. They were also less likely to have achieved traditional adulthood milestones. Maladaptive coping was the strongest predictor of depression for YA with ID. In comparison, both maladaptive coping and insight predicted depression in controls. More maladaptive coping predicted increased depressive symptoms in both populations, whilst increased insight predicted fewer depressive symptoms in controls. Conclusions Insight and maladaptive coping are potential targets in the treatment of anxiety and depression among YA with ID. Longitudinal intervention studies exploring the efficacy of such targeted programmes in reducing mental health symptoms and improving the transition to adulthood for these young people are recommended.

© 2017 Taylor & Francis.Introduction: This article introduces the SAINT (Self-Assessment and INTervention), a guided self-help intervention for the treatment of mild depression in people with intellectual disabilities. Method: The study used a single-case experimental design and adopted quality frameworks specific to the approach to describe the participants and to standardize the study. The aim was to examine the acceptability and effectiveness of the SAINT on reducing symptoms of anxiety and depression. Semi-structured interviews were conducted to record user experiences and a framework-analysis approach was used. Attendance at sessions was also monitored. Results: Nine people receiving guided self-help using SAINT demonstrated a decrease in symptoms for both intervention phases for either depression or anxiety, with four showing a decrease in mean symptom scores in both intervention phases for both depression and anxiety. Those with a history of affective disorders and those with moderate intellectual disabilities showed improved symptom scores during both intervention phases. Summary and Conclusion: The idea that the SAINT can be feasibly implemented in routine clinical practice was broadly supported, with the positive outcomes relating to symptom reduction and acceptability. From the feedback received, the SAINT is tolerated well by participants and viewed positively by those using it and those who have supported people in its use.

People with intellectual disabilities are more likely than the general population to experience psychiatric disorders. Service provision changes in New Zealand, similar to those in other countries, have resulted in increased expectations for primary health practitioners to take responsibility for the assessment and treatment of psychiatric disorders in people with intellectual disabilities. The study explored (via thematic analysis of responses to an online survey, focus group, and an individual interview) challenges that health practitioners (13 psychiatrists, 24 clinical psychologists, 3 general practitioners, and 8 other health practitioners) had experienced when diagnosing psychiatric disorders in people with intellectual disabilities, and how they had overcome these challenges. The study revealed the complexities that health practitioners experience when diagnosing psychiatric difficulties in people with intellectual disabilities. Additionally, a number of strategies to address these challeng...

Purpose The purpose of this paper is to assess the effects of compassion-focussed therapy (CFT) on anxiety in a small sample of adults with intellectual disability. Design/methodology/approach A mixed-methods design was employed. Participants (n=3) completed questionnaire measures of anxiety and self-compassion on three occasions: pre-intervention, post-intervention and, at three months follow-up. Post-intervention, they also took part in recorded interviews that were analysed using interpretive phenomenological analysis. Findings were then synthesised to develop a comprehensive understanding of their overall experience. Findings Final data synthesis revealed five themes: participant anxiety decreased (reliable for all participants); the faulty self; improved positive compassionate attitudes; increased sense of common humanity; and mindful distraction techniques. Research limitations/implications This research paper offers in-depth analysis of three participants’ experiences rather than reporting in less detail about a larger number of participants. The self-compassion scale required considerable support and reasonable adaptation to be used with these clients. Originality/value Only two other studies have explored the use of CFT with people with intellectual disabilities.