Search

Background: People with intellectual disabilities are at risk of experiencing stigma and require the skills and confidence to deal with stigma in their daily lives. Method: Development and piloting of a 5-session manualised psychosocial group intervention designed to increase the capacity of people with intellectual disabilities aged 16+ to manage and resist stigma. Ten pre-existing groups (N = 67) in third sector and education settings participated. Interviews with participants (n = 26), facilitators (n = 9) and significant others (n = 7) 2-4 months after the intervention assessed perceived impact. Results: Perceived benefits of the intervention for participants included increased understanding, improved connections with others, drive for advocacy, increased activity and self-efficacy, and opportunity to process difficult events and emotions. Differential impact depending on individuals' pre-existing self-advocacy skills was noted. Conclusions: This early-stage study indicates that further evaluation is merited to examine feasibility and outcomes of the STORM intervention.

This study aimed to compare cognitive and memory abilities between older adults with and without autism over the age of 50. Twenty-eight individuals with autism and 29 typically developing (TD) older adults took part in the current study. Participants' cognitive and memory abilities were assessed by WAIS-IV and WMS-IV. Older autistic adults were found to have poorer performance in processing speed and visual working memory, but they performed at a similar level as TD controls in all other domains. Poorer processing speed and visual working memory are also often found to be associated with age-related decline in neurotypical adults. Longitudinal studies are warranted to explore how the combination of ageing and autism affects cognitive functioning in older adults.

Background: Stigma contributes to the negative social conditions persons with intellectual disabilities are exposed to, and it needs tackling at multiple levels. Standing Up for Myself is a psychosocial group intervention designed to enable individuals with intellectual disabilities to discuss stigmatising encounters in a safe and supportive setting and to increase their self-efficacy in managing and resisting stigma. Objectives: To adapt Standing Up for Myself to make it suitable as a digital intervention; to evaluate the feasibility and acceptability of Digital Standing Up for Myself and online administration of outcome measures in a pilot; to describe usual practice in the context of the coronavirus disease 2019 pandemic to inform future evaluation. Design: Adaptation work followed by a single-arm pilot of intervention delivery. Setting and participants: Four third and education sector organisations. Individuals with mild-to-moderate intellectual disabilities, aged 16+, members of existing groups, with access to digital platforms. Intervention: Digital Standing Up for Myself intervention. Adapted from face-to-face Standing Up for Myself intervention, delivered over four weekly sessions, plus a 1-month follow-up session. Outcomes: Acceptability and feasibility of delivering Digital Standing Up for Myself and of collecting outcome and health economic measures at baseline and 3 months post baseline. Outcomes are mental well-being, self-esteem, self-efficacy in rejecting prejudice, reactions to discrimination and sense of social power. Results: Adaptation to the intervention required changes to session duration, group size and number of videos; otherwise, the content remained largely the same. Guidance was aligned with digital delivery methods and a new group member booklet was produced. Twenty-two participants provided baseline data. The intervention was started by 21 participants (four groups), all of whom were retained at 3 months. Group facilitators reported delivering the intervention as feasible and suggested some refinements. Fidelity of the intervention was good, with over 90% of key components observed as implemented by facilitators. Both facilitators and group members reported the intervention to be acceptable. Group members reported subjective benefits, including increased confidence, pride and knowing how to deal with difficult situations. Digital collection of all outcome measures was feasible and acceptable, with data completeness ≥ 95% for all measures at both time points. Finally, a picture of usual practice has been developed as an intervention comparator for a future trial. Limitations: The pilot sample was small. It remains unclear whether participants would be willing to be randomised to a treatment as usual arm or whether they could be retained for 12 months follow-up. Conclusions: The target number of groups and participants were recruited, and retention was good. It is feasible and acceptable for group facilitators with some training and supervision to deliver Digital Standing Up for Myself. Further optimisation of the intervention is warranted. Future work: To maximise the acceptability and reach of the intervention, a future trial could offer the adapted Digital Standing Up for Myself, potentially alongside the original face-to-face version of the intervention. Study registration: This study was registered as ISRCTN16056848. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information. Plain language summary: People with intellectual disabilities (or 'learning disabilities' in United Kingdom language) are more likely to experience poor physical and mental health than the general population. Stigma (negative stereotypes, prejudice and discrimination) has been linked to lower self-esteem, quality of life, and mental and physical ill health. Efforts to empower people with intellectual disabilities themselves to challenge stigma with a view to improving well-being, health and self-esteem are lacking. In 2017, we developed Standing Up for Myself, a brief group-based programme for people with mild-to-moderate intellectual disabilities aged 16+ to address this gap. As this study got underway, face-to-face meetings were suspended due to the coronavirus disease 2019 pandemic. We used the opportunity to assess whether Standing Up for Myself could be delivered through web-based meetings. We adapted Standing Up for Myself for digital delivery, with close input from advisors with intellectual disabilities and experienced group facilitators. We then tested the digital version in charity and education settings to evaluate if Digital Standing Up for Myself could be delivered as planned and how acceptable it was to group facilitators and participants. Four groups, with a total of 22 members, signed up to try Digital Standing Up for Myself. One participant dropped out before starting Standing Up for Myself, and the other 21 continued until the end of the programme. Retention and attendance were good; participants on average attended four of the five sessions. Ninety per cent of the core programme requirements were fully delivered as detailed in the Digital Standing Up for Myself manual. Problems with technology were manageable, although facilitators found using the Standing Up for Myself Wiki platform (an online platform for storage and sharing of resources) difficult, particularly when sharing video content. Facilitators felt acceptable levels of privacy were achieved and there were no reports of undue distress. All facilitators and many group members said they would recommend Digital Standing Up for Myself to others. Group members shared how the programme benefitted them, noting increased awareness about disabilities, and for some increased confidence, pride and independence. Some had learnt how to stand up for themselves and manage difficult situations and took pride in this. Completing outcome and health cost measures via web-based meetings was acceptable and data were largely fully complete and useable. Scientific summary: Background: Approximately 1.4–2% of the UK population have an intellectual disability. Individuals with intellectual disabilities face substantial social and health inequalities and are at increased risk of experiencing mental health problems. One factor compounding these inequalities is the impact of stigma, whereby individuals experience negative stereotyping, prejudice and discrimination associated with intellectual disability. Interventions that seek to reduce stigma are needed at multiple levels. The Standing Up for Myself (STORM) programme targets the person with an intellectual disability themselves and seeks to empower them as agent of positive change. It seeks to empower individuals with intellectual disabilities to challenge stigma they face in everyday encounters, thus potentially improving well-being and reducing inequalities, alongside interventions at community and institutional/societal levels to reduce stigma. An earlier pilot of the STORM programme showed it to be a promising intervention which could be delivered in community, third sector (i.e. 'charities' that typically provide services to achieve social goals) and education settings to existing groups of individuals with intellectual disabilities, aged 16 years and above. Some issues were highlighted which were to be addressed as part of a feasibility study with the intention of progressing to a fully powered randomised controlled trial (RCT). The start of the feasibility study coincided with the outbreak of the coronavirus disease 2019 (COVID-19) pandemic and the first national lockdown during month 6 of the original project. Following a necessary pause, the study management team saw a unique opportunity to revise the study to examine the potential of STORM as a digital intervention. Adapting STORM to make it suitable for digital delivery would allow the programme to be available to a much wider audience and potentially future-proof it in the context of the ongoing pandemic. Extensive patient and public involvement (PPI) work generated evidence in line with the National Institute for Health and Care Excellence (Evidence Standards Framework for Digital Health Technologies, 2019, www.nice.org.uk/Media/Default/About/what-we-do/our-programmes/evidence-standards-framework/digital-evidence-standards-framework.pdf) framework for digital health technologies and indicated that the creation of a digital version of STORM was important to potential future users and professionals. We, therefore, proposed to adapt the STORM programme for digital delivery to groups of individuals with mild-to-moderate intellectual disabilities. Working closely with PPI partners we planned, following adaptation of the intervention, to deliver the digital programme to four groups as part of a small pilot study. We also engaged experts on digital inclusion and learning design to ensure that the adapted digital version of STORM was optimised for engagement of people with intellectual disabilities and delivery by group facilitators with varying experience and skills in digital delivery. Objectives: to adapt the existing STORM intervention for online delivery (Digital STORM), ensuring the content, number of sessions and direct contact time were the same for both STORM and Digital STORM ; to pilot the Digital STORM intervention in order to investigate the feasibility of recruitment to and retention of participants in Digital STORM ; and adherence, fidelity and acceptability of Digital STORM , when delivered to groups of people with mild-to-moderate intellectual disabilities online; to test digital administration of the study outcome and health economics measures; to build on community assessments to describe what usual practice might look like for groups of people with mild-to-moderate intellectual disabilities in the wake of COVID-19, to inform a potential future trial. Methods: Design and procedure: Digital STORM was an adaptation of the original STORM intervention, designed for online delivery, piloted with four groups of young people and adults with mild-to-moderate intellectual disabilities. Adaptation and pilot work took place during months 14–21 of the overall 24-month project in distinct phases of work: Intervention adaptation (months 14–17) An Intervention Adaptation Group (IAG) was established to oversee the adaptation and report progress to oversight committees. The group included all members of the PPI advisory group (people with intellectual disabilities, the independent co-chair), experienced group facilitators from third and education sector organisations (from our stakeholder group), Mencap as our intervention delivery partner, digital inclusion experts and members of the research team. The focus of this group was to maximise access to and engagement with Digital STORM to ensure it would be inclusive and to address potential barriers to access to and/or engagement with the intervention. Pilot of Digital STORM (months 18–21) The adapted intervention was then piloted with four groups (N = 22). Priority was given to groups that had expressed interest in participating in STORM at the point of having to pause the original study in March 2020 due to the first national coronavirus disease 2019 (COVID-19) lockdown. Of the four pilot groups, at least one would need to do some additional work to allow all its group members to access Digital STORM. This would allow us to explore 'live' how issues relating to access to technology, support, and provisions to ensure privacy are managed. Following delivery of the adapted digital intervention, pilot group facilitators were interviewed about their experiences to assess barriers and facilitators to implementation. Participants took part in focus groups to access their views on the intervention, the delivery mechanisms, and the intervention's subjective impact. The focus groups were co-led by a member of the PPI advisory group and a researcher in three cases and by a researcher alone in one case and recorded. Decision phase (month 22) Oversight committees met at regular intervals throughout the adaptation and pilot phases to monitor progress. They reviewed findings from the pilot against the progression criteria and made recommendations to the National Institute for Health and Care Research (NIHR) regarding the potential for a future funding application. Inclusion and exclusion criteria: Groups from third and education sector organisations were included where they had a willing facilitator and organisational support in place, were meeting or restarting meetings as a group for at least 3 further months and were willing to replace five of their meetings with Digital STORM. Groups needed at least three and no more than eight members with intellectual disabilities to participate. Groups were excluded if they were run as part of the National Health Service, or if some of their regular members declined taking part in Digital STORM and if it was not possible to find alternative meeting times for those who wanted to participate. Individual participants were included if they were aged 16 years or older, had mild-to-moderate intellectual disabilities, capacity to provide informed consent, were able to complete the outcome measures and could engage with the intervention in English. They needed to be a member of an established (educational, activity, social or self-advocacy focused) group; to have access to the internet, a device to join web meetings, and support to access web-based meetings when needed. Participants were excluded from the research if they did not provide consent. Intervention: Adaptation of the STORM intervention for delivery using web-based video meetings (Digital STORM), consisting of four weekly 90-minute sessions and a 90-minute follow-up session (delivered around 4 weeks after session four). An intervention manual and a Wiki (a web platform designed as both a repository of intervention resources and an aide to delivering session content) was provided to facilitators. Outcomes: The primary outcome of the adaptation phase was the feasibility and acceptability of delivering STORM to groups in a web-delivered format (Digital STORM). Secondary outcomes of the adaptation phase were the feasibility of remotely collecting outcomes, health economics and process data and the description of 'Usual practice', that is, activities usually undertaken within the group setting, in a changed service delivery context. Analyses: Pilot data (baseline demographics, responses to outcome measures, adherence and fidelity ratings) were described descriptively. The feasibility of economic evaluation was assessed using completion rates of included measures [Service Information Schedule (SIS), EuroQol-Youth version, and Client Service Receipt Inventory]. Intervention costs were calculated using SIS data. Qualitative interviews and focus groups were conducted to explore barriers and facilitators to participation in the intervention. Interview and focus group transcripts were analysed thematically using Framework analysis; a sample of transcripts was double coded. Progression criteria were included to determine suitability for moving to a future trial of Digital STORM. Results: The STORM intervention was successfully adapted for online delivery (objective 1). The IAG addressed issues such as access to the digital intervention, engagement with it and potential risks to managing participant privacy. Minor adjustments were made to the STORM intervention to allow for digital delivery. Content was slightly streamlined to ensure each session could be covered within the 60-minute sessions. Resources were created to support participation in online group work (for participants) and for running sessions (for facilitators). A revised intervention logic model for Digital STORM was also created. Digital STORM was both feasible and acceptable when delivered to groups online (objective 2). Targets for recruitment into the pilot of Digital STORM were met with 4 groups taking part and 22 participants providing informed consent, 1 of whom dropped out before starting the intervention. There was good attendance across sessions (median attendance 5 out of 5 sessions, with 20 of 21 participants attending 3 or more sessions) and the majority of participants missed no more than 15 minutes of any one intervention session due to technical difficulties. Accordingly, there was a strong indicator of feasibility for progression to a future trial. There was also a strong indicator for the acceptability of Digital STORM. Facilitators found the recording of sessions acceptable and over 90% of the core intervention requirements were met in full. Feasibility and acceptability were also examined through interviews (with facilitators) and focus groups (with participants). Resources supported facilitators' delivery of sessions though some reported challenges when playing and sharing videos in online meetings and with trying to co-ordinate moving between video sharing via the STORM Wiki platform, the manual and operating the meeting platform. Feasibility of administering study outcome measures was also demonstrated (objective 3). Participants completed outcome measures via web-based platforms at baseline and post intervention. This enabled the research team to recruit from a wider geographical area than would have been possible using face-to-face data collection methods. Data completeness was very high – only one response was missing across all measures. Similarly, data completeness for economic evaluation was very good with no barriers to future data collection identified. Group members' experience of completing measures was positive and they felt positive about the digital approach as a method for data collection in future. Finally, it was determined that many organisations delivering group sessions had made the transition to online delivery and were running virtual groups. This supports the possibility of including a control arm that described 'usual practice' as part of a future trial (objective 4). Conclusions: The STORM digital adaptation and pilot was a well-delivered package of work. Results evidence that all progression criteria were achieved in full. Oversight committees therefore recommend progression to a full trial. Strengths and limitations: The key strength of this work was the ability of the team to work flexibly and creatively to adapt to the changing situation of the pandemic. Involvement of experts by experience meant the rationale for creating a digital version of STORM was supported by all stakeholders and the accessibility of the processes and resources was considered carefully from a user perspective. A number of limitations need noting. These include the small sample size for the pilot; long-term retention was not established; those taking part all did so with the knowledge they would receive the intervention, thus the ability to randomise was not confirmed; the video sharing platform was not optimal – other approaches might have worked better; qualitative work could not capture the views of all those who took part in the pilot. Study registration: This study was registered as ISRCTN16056848. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme (NIHR award ref: 17/149/03) and is published in full in Public Health Research; Vol. 12, No. 1. See the NIHR Funding and Awards website for further award information. [ABSTRACT FROM AUTHOR]

Research on the experience of growing older with autism is very limited. In this study, 13 people with autism aged over 50 years participated in semi-structured interviews about their experiences of diagnosis, social support and getting older. Interviews were analysed using thematic analysis. Three overarching themes were generated: difference, life review and longing for connection. Prior to diagnosis, individuals had awareness of their difficulties, attributed these to intrinsic difference and engaged in a deliberate process of reducing the visibility of this difference. Diagnosis prompted a process of life review and externalisation, whereby past negative experiences were reattributed to autism as opposed to the self. Loneliness, isolation and yearning for interpersonal connection were ubiquitous and longstanding. Autism support and social groups were highly valued, offering opportunities for belonging, acceptance and social comparison. Results highlight the similarity to younger age groups in terms of lived experience and need for greater support, particularly with respect to reducing isolation and improving access to diagnosis.

We developed a brief, informant-report interview for assessing autism spectrum conditions (ASC) in adults, called the Developmental, Dimensional and Diagnostic Interview-Adult Version (3Di-Adult); and completed a preliminary evaluation. Informant reports were collected for participants with ASC (n = 39), a non-clinical comparison group (n = 29) and a clinical comparison group (n = 20) who had non-autistic mental health conditions. Mean administration time was 38 min (50 min for ASC). Internal consistency (as = 0.93) and inter-rater agreement (ICCs = 0.99) were high. When discriminating ASC from non-ASC, the 3Di-Adult showed excellent sensitivity (95%) and specificity (92%). The 3Di-Adult shows promise as a psychometrically sound and time-efficient interview for collecting standardised informant reports for DSM-5 assessments of ASC in adults, in research and clinical practice.

This paper considers current workforce issues facing psychological professionals working in NHS services, examining the challenges, and identifying opportunities to better meet the needs of autistic people and people with an intellectual disability (PwID) across the lifespan. The aim of this paper is to identify and publicly articulate the need for a coherent approach to guide the practice of psychological professionals when helping autistic people and/or PwID. It should be noted that the scope of the paper is limited to autism and intellectual disability. In addressing these broad groups and their co-occurring conditions and needs, we anticipate that many principles could be applied to other neurodevelopmental conditions. We also note the significant potential challenges in linking intellectual disability and autistic populations, hence have attempted – in drawing together a working group to write this paper – to ensure representation from a range of psychological professionals including those in policy, leadership, and training roles, those working in specialist or generic mental health services and undertaking clinical research across the lifespan. Objectives: ■ To help define and support clear action so that all sectors welcome and adequately support people with neurodevelopmental differences, including autistic people and/or PwID. ■ To play a role in the development, planning and evaluation of new psychological professions roles such as the Clinical Associates in Psychology (CAPS) and Education Mental Health Practitioners (EMHPs). ■ To reflect on the obstacles to recruiting to autism and learning disability services and to propose approaches to developing a sustainable psychological workforce in these areas. ■ To recognise where good examples of education and training programmes exist to address training, confidence and competence for all psychological professionals working with those who may be autistic and/or have an ID, and consider how to establish a more consistent approach to education, training and CPD across the workforce. ■ To engage in policy discussions around the current gaps, such as the demand for diagnostic assessments and support which significantly outstrips capacity, whilst highlighting unrealised opportunities, through for example, a systematic approach to training. ■ To advocate for the need for the voice of autistic people and PwID and their families/carers which is often absent from the design and offer of help. [ABSTRACT FROM AUTHOR]

Foresight is essential for long-term planning and forward-looking decision-making in forestry, where planning horizons often span many decades. But generating foresight is challenging due to the increasing pace and complexity of change and growing uncertainty about the future. Most change that could affect or even disrupt forestry in the future originates outside of the field, such as social, technological, economic, and environmental changes. The Forest Futures Horizon Scanning project (Forest Horizons) aims to generate foresight by identifying early signals of change from outside forestry that professionals within the field may not be aware of or pay close attention to. This article draws on the database of signals of change uncovered in the Forest Horizons project and identifies fifteen key emerging changes that could help shape the long-term future of forestry. Study Implications: The long-term nature of forestry has compelled foresters to be forward-looking and plan many decades ahead. Horizon scanning is a tool that can enhance foresight in forestry by identifying emerging signals of change that could affect the field in the future. Fifteen wide-ranging early signals of change are highlighted in this article. Consideration of these emerging changes in long-term and strategic planning could help forestry decision makers prepare for change and avoid being blindsided. Horizon scanning is a useful approach to help generate essential foresight in an era of increasingly rapid, complex, and often surprising change. [ABSTRACT FROM AUTHOR]

Introduction: The Resident Choice Assessment Scale (RCAS) is used to assess choice availability for adults with intellectual disabilities (ID). The aim of the study was to explore the factor structure, construct validity, and internal consistency of the measure in community settings to further validate this tool. Method: 108 paid carers of adults with ID living in supported accommodation and residential care facilities in urban, rural, and semirural areas in England completed the RCAS. Exploratory factor analyses were performed and the construct validity and internal consistency of the emerging factors were assessed. Results: Principal axis factoring with oblique rotations suggested a scale with two factors (Everyday Choices and Participation in Household Activities) which explained 45% of the variance; the factors showed favorable construct validity as they identified significant differences between those living in residential care homes compared with supported living; the factors also differentiated between people with different levels of intellectual impairment with less choice and participation in domestic activities for those with more severe ID compared to their counterparts with moderate and mild impairment. Five items did not load onto any factor, suggesting that these could be dropped from the scale when administered in community settings, thus resulting in an 18-item measure (RCAS-18). Conclusion: The RCAS-18 may provide a useful measure to assess choice availability for people with ID supported by paid carers in the community. The revised measure may be more suitable in capturing choice than the original version for use in community samples.

To authenticate to the full-text of this article, please visit this link: http://dx.doi.org/10.1111/j.1540-4560.2010.01662.x Byline: Jason W. Crabtree (1), S. Alexander Haslam (1), Tom Postmes (2), Catherine Haslam (3) Abstract: Research into the relationship between stigmatization and well-being suggests that identification with a stigmatized group can buffer individuals from the adverse effects of stigma. In part, this is because social identification is hypothesized to provide a basis for social support which increases resistance to stigma and rejection of negative in-group stereotypes. The present research tests this model among individuals with mental health problems. As hypothesized, group identification predicted increased social support, stereotype rejection, and stigma resistance. These self-protective mechanisms were in turn found to predict higher levels of self-esteem. However, the general effect of these associations was to suppress a negative relationship between social identification and self-esteem. This confirms that the positive impact of identification lies in its capacity to provide access to stress-buffering mechanisms but also indicates that the impact of identification with a severely stigmatized group is not necessarily positive. Implications for theory and practice are discussed. Author Affiliation: (1)University of Exeter (2)University of ExeterUniversity of Groningen (3)University of Exeter Article note: (*) Correspondence concerning this article should be addressed to S. Alex Haslam, School of Psychology, University of Exeter, EX4 4QG, United Kingdom [e-mail: A.Haslam@exeter.ac.uk].

Serious games are designed to achieve specific educational or other practical purposes beyond pure entertainment. These games take many different forms—from card decks to massive multiplayer online games—and have proliferated across diverse fields. This note introduces IMPACT: Forestry Edition , a serious board game designed to help forestry professionals and stakeholders think more broadly, critically, and creatively about the future of forestry. We describe the game and feedback from beta testing and discuss the advantages and potential drawbacks of gaming methods. A "print and play" version of the game is included as supplemental material. Serious games can make an important contribution to forestry by engaging and informing diverse stakeholders and generating insight that other methods cannot. [ABSTRACT FROM AUTHOR]

Background: Although Positive Behaviour Support (PBS) is a widely used intervention for ameliorating challenging behaviour (CB), evidence for its use in adults with intellectual disability (ID) and comorbid autism (ASD) is lacking. We report a planned subsidiary analysis of adults with both ASD and ID who participated in a randomised trial of PBS delivered by health professionals. Methods: The study was a multicentre, cluster randomised trial conducted in 23 community ID services in England, participants were randomly allocated to either the delivery of PBS (n = 11 clusters) or to treatment as usual (TAU; n = 12). One-hundred and thirteen participants (46% of all participants in the trial) had a diagnosis of ID, autism spectrum disorder and CB (ASD+); (47 allocated to the intervention arm, and 66 to the control). CB (primary outcome) was measured with the Aberrant Behaviour Checklist total score (ABC-CT). Secondary outcomes included mental health status, psychotropic medication use, health and social care costs and quality adjusted life years (QALYs) over 12 months. Results: There were no statistically significant differences in ABC-CT between ASD+ groups randomised to the two arms over 12 months (adjusted mean difference = − 2.10, 95% CI: − 11.3 7.13, p = 0.655) or other measures. The mean incremental cost of the intervention per participant was £628 (95% CI -£1004 to £2013). There was a difference of 0.039 (95% CI − 0.028 to 0.103) for QALYs and a cost per QALY gained of £16,080. Conclusions: Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams. Further evidence is needed from larger trials, and development of improved interventions. Trial registration: ClinicalTrials.gov: NCT01680276. [ABSTRACT FROM AUTHOR]