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Background: People with intellectual disabilities commonly experience multiple barriers to 'going out'. Aims: This paper explores what barriers prevented people from going out, and if the extent and nature of going out changed over time for people with intellectual disabilities as the COVID-19 pandemic progressed. Methods: Data are drawn from a wider study that explored, at four time points, the experiences of people with intellectual disabilities through the COVID-19 pandemic in the United Kingdom. Findings: The number of people leaving the house for almost all reasons increased over time through the pandemic, except for some outdoor participation and exercise. However, there was a significant decrease in outdoor exercise at the final time point of the study. Reliance on other people and a lack of availability of support were identified as barriers. Conclusion: A combination of factors restricted the extent to which people were going out even after COVID-19 protections were lifted.

Background: Talking therapy for people with intellectual disabilities is often specifically adapted. One adaptation is the involvement of significant others in therapy, however, there is no systematic description of the use of this adaptation in routine clinical practice. Method: An online survey of UK psychologists regarding the inclusion of significant others in individual therapy with people with intellectual disabilities. Data were analysed using qualitative content analysis. Results: Ninety-five psychologists who work with people with intellectual disabilities provided responses to questions regarding the decision to include significant others in therapy, factors that make including significant others more or less likely and how the role of significant others is explained to them. Conclusions: Psychologists consider a range of factors in deciding the involvement of significant others. We discuss implications for training of therapists working with people with intellectual disabilities, issues of consent and how the roles of significant others are understood.

Background: The aim of this feasibility study was to adapt and model a behavioural intervention for anxiety with autistic adults with moderate to severe intellectual disabilities. Method: Twenty-eight autistic adults with moderate or severe intellectual disabilities, 37 carers, and 40 therapists took part in this single-group non-randomised feasibility study designed to test intervention feasibility and acceptability, outcome measures, and research processes. Results: The intervention was judged as feasible and acceptable by autistic adults with intellectual disabilities, carers, and therapists. Minor intervention revisions were suggested. Carers completed 100% of outcome measures and the missing data rate was low. Complying with legislation governing the inclusion of participants who lack capacity to decide whether they wanted to take part in this study led to an average 5-week enrolment delay. Conclusion: The intervention and associated study processes were judged to be feasible and acceptable and should now be tested within a larger randomised trial.

Background: During the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic? Methods: Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid careers. Information was provided four times, from Wave 1 (in the winter 2020/2021 'lockdown') to Wave 4 (autumn 2022, over a year after public health protections stopped). Findings: By Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services. Conclusions: Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened.

Background: Moving out of the family home is a key transition for people with intellectual disabilities and their families. Yet there has been little research about parents' experiences of planning the move of their young adult offspring to residential settings offering 24-hour support. Method: Interviews were conducted with eleven parents whose offspring moved to residential settings within the past 5 years (five fathers; six mothers). They consisted of structured questions about planning their offsprings' moves and semi-structured questions about parents' experiences. Results: Content analysis of the structured questions revealed reasons parents began thinking about the moves and routes to finding information. The thematic analysis highlighted the emotional challenges parents faced. Conclusions: The findings highlight the need to address this neglected topic and ensure that practical and emotional support is put in place to plan positive futures, rather than relying on families to use their own initiative or waiting until a crisis occurs.

Introduction: Family members are often the main provider of informal support to people with mild intellectual disabilities. In the current study, we explored whether their family-based social capital is prospectively associated with their wellbeing and emotional and behavioral problems. Methods: Sixty-nine participants with mild intellectual disabilities and key (proxy reporting) staff members participated in two waves of data collection (T1, T2). Data were collected about family-based social capital (FNM-ID), subjective wellbeing (PWI-ID), and emotional and behavioral problems (ABCL, BPI-01). Results: People who reported less support provision to family members and more reciprocal family support relationships at T1 experienced higher levels of internalizing behavior problems at T2, after accounting for T1 levels of internalizing behavior problems. No other associations were found between earlier family-based social capital dimensions and psychological outcomes at T2. Conclusion: Our study provides initial insights regarding the prospective associations between the family-based social capital of people with mild intellectual disabilities and their wellbeing and emotional and behavioral problems. Future studies should include larger samples to investigate if our preliminary results are replicated.

Background: People with severe to profound intellectual disabilities experience similar or higher levels of depression than those with more mild intellectual disabilities. Yet, there is an absence of evidence about how to adapt existing psychological therapies for this population. Method: A behavioural activation intervention (BeatIt) for people with mild to moderate intellectual disabilities was adapted for people with severe to profound intellectual disabilities and depression. Key considerations include: (i) beginning with a more in-depth assessment process; (ii) including the person in session activities and developing a relationship with them; (iii) formulation and the use of film to document the link between activity and mood; and (iv) addressing barriers to change at an individual and inter-personal level and considering how the carer could support the person's engagement in activity. Results: Successfully adapting BeatIt represents a first step towards gathering evidence about the effectiveness of behavioural activation for people with severe to profound intellectual disabilities.

Background: Almost no research has been published reporting on evaluations of the effectiveness of psychological interventions for people with severe to profound intellectual disabilities and depression. This paper describes the development and initial feasibility testing of an adapted Behavioural Activation therapy (BeatIt2) for this population. Method: Phase 1 of the study examined participant recruitment and willingness to be randomised in the context of a planned Randomised Controlled Trial (RCT). Phase 2 examined the feasibility of delivering the intervention. Results: Twenty adults with a severe or profound intellectual disability and clinically significant depression were recruited to Phase 1 of the study. In Phase 2, there was 100% participant retention for those recruited to the study at 6-month follow-up. The BeatIt2 therapy was reported to be acceptable for participants. Conclusion: COVID disruption meant that it was not possible to complete the planned feasibility RCT. The positive findings suggest that additional evaluation of BeatIt2 is warranted.

Background Interventions for anxiety need to be adapted to meet the needs of autistic people with moderate to severe learning disabilities and successfully modelled before evidence about efficacy can be generated from clinical trials. Objectives The objectives were to: (1) adapt a behavioural intervention for anxiety, develop an intervention fidelity checklist and logic model, and appraise candidate outcome measures, together with carers, autistic people, and clinicians, (2) characterise treatment-as-usual, (3) model the adapted intervention to determine the acceptability and feasibility for all stakeholders, judge the appropriateness of outcome measures, examine the feasibility and acceptability of consent and associated processes and (4) describe factors that facilitate or challenge intervention delivery. Design This study had two phases. Phase 1a: using consensus methods, an intervention adaptation group was formed who met to adapt the intervention, appraise candidate outcome measures, and contribute to the development of the intervention fidelity checklists and logic model. Phase 1b: a national online survey was conducted with professionals to characterise treatment-as-usual. Phase 2: this was a single-group non-randomised feasibility study designed to model the intervention to test intervention feasibility and acceptability, outcome measures, and aspects of the research process. Setting Participants were recruited from National Health Service community adult learning disabilities teams in England. Participants Participants aged 16 and over with a diagnosis of autism, moderate to severe learning disabilities, an anxiety disorder, and a carer who was available to take part in the intervention. For those who lacked capacity to make a decision about taking part, a consultee had to provide advice that the participant should be included in the study. Interventions The intervention comprised 12 sessions alongside treatment-as-usual. Main outcome measures The feasibility and acceptability of the intervention and research processes, outcome measure completion rates, and intervention adherence. Results The intervention was successfully adapted and modelled with 28 autistic participants with moderate to severe learning disabilities. The intervention was judged to be feasible and acceptable by autistic adults with learning disabilities, carers, and therapists. Carers and therapists suggested minor intervention revisions. Carers completed 100% of outcome measures and the missing data rate was low; however, they indicated that some of the questions were repetitive and said they had difficulty responding to some items. The use of the Mental Capacity Act, 2005, led to an average 5-week delay to participant enrolment. The accrual rate was affected by the COVID-19 pandemic and improved during the summer and early autumn of 2022. Limitations Randomisation was not modelled within this feasibility study, although carers and therapists indicated that this would be acceptable. Conclusions The BEAMS-ID intervention and associated study processes were judged to be feasible and acceptable. The intervention required minor revision. Future work The BEAMS-ID intervention should be tested further within a trial. Study registration This study is registered as ISRCTN12637590. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR129804) and is published in full in Health Technology Assessment; Vol. 28, No. 72. See the NIHR Funding and Awards website for further award information. Plain language summary This study was about autistic adults with moderate to severe learning disabilities who have anxiety. There are good interventions for anxiety, but these need to change to meet the needs of autistic adults with moderate to severe learning disabilities. An example of such an intervention is called exposure therapy. This study had two parts. In the first part, we worked with autistic adults, carers and family members, and professionals to adapt an existing anxiety intervention. We also completed a national survey to find out what interventions people are getting now. In the second part, the intervention was tested with 28 autistic adults with moderate to severe learning disabilities. We asked participants, carers and clinicians about their experiences of being part of the study and receiving the intervention. We successfully changed an existing intervention together with autistic adults, carers and family members, and professionals. The intervention included relaxation training and exposure therapy. From our national survey, we found out that autistic people with moderate to severe learning disabilities who have problems with anxiety are most often offered psychological interventions (e.g. relaxation) or medication (e.g. sertraline) for anxiety. Exposure therapy was not offered very frequently. We tried out our intervention and autistic people with moderate to severe learning disabilities told us that they liked coming to the intervention and liked that their carer attended. Carers liked taking part in the research and were positive about the intervention. Therapists told us that the intervention was suitable and were positive about the training they received in delivering the intervention. Both carers and therapists suggested some changes to the intervention to help improve it in the future. We recommended that a larger study should now be completed. Scientific summary Background A large number of people with autism and learning disabilities have problems with anxiety. There is evidence that talking psychological therapies are an effective intervention for anxiety, but many of these interventions have not been tested with people who have both autism and learning disabilities. These interventions need to be adapted before they can be used with this population because of their difficulties with verbal communication, restricted and repetitive behaviours, and behaviours that challenge. Objectives We aimed to (1) work with our patient and public involvement (PPI) partners to adapt an existing intervention manual for anxiety disorders for use with autistic adults with moderate to severe learning disabilities and (2) complete a feasibility study to try out our intervention and seek feedback from participants, families and therapists. In addition, we collected information about what interventions people are currently receiving to characterise treatment-as-usual (TAU) and test out some outcome measures. Phase 1a: adaptation Our objectives were: to establish an intervention adaptation group (IAG) and, during a series of meetings, adapt an existing intervention to treat anxiety symptoms in autistic adults who have moderate to severe learning disabilities to develop an intervention fidelity checklist that can be used alongside the intervention manual to appraise and consider several candidate outcome measures of anxiety-related symptoms and make a recommendation for use within Phase 2 to develop an intervention logic model. Phase 1b: description of treatment-as-usual Our objective was to complete a national survey of existing interventions for adults with anxiety disorders who have moderate to severe learning disabilities. The survey was constructed using items adapted from the Template for Intervention Description and Replication (TIDieR) checklist to ensure a clear description of TAU. This phase ran concurrently with Phase 1a and Phase 2. This allowed for the capture of data to allow for the characterisation of TAU, including any specific interventions offered. We invited participation from all community-based services for people with autism and/or learning disabilities across the United Kingdom. Phase 2: feasibility study Our objectives were: to model the manualised intervention to determine the acceptability and feasibility for all stakeholders, including autistic adults with moderate to severe learning disabilities, carers, and clinicians, and adjust as required to judge the appropriateness, including response rates, of our measures of anxiety-related symptomatology for use within a larger study to examine the feasibility and acceptability of consent and associated processes in the context of the Mental Capacity Act, 2005 and to describe factors that facilitate or challenge the implementation of our intervention. Methods Study design Phase 1a (intervention adaptation) An IAG was established, and during a series of five meetings an existing intervention used to treat anxiety symptoms in adults with autism was adapted for use with people who also have moderate to severe learning disabilities. Phase 1b (treatment-as-usual survey) A national survey of existing community-based interventions for adults with anxiety disorders who have moderate to severe learning disabilities was conducted. The TIDieR checklist was used to inform the development of our survey questions to ensure a clear description of TAU. Phase 2 (feasibility study) This study was a single-arm, non-randomised, feasibility study, with autistic people who have moderate to severe learning disabilities. Participants and their carers received the adapted intervention developed in Phase 1a, in conjunction with any other intervention they were receiving. Both qualitative and quantitative research methods were used to address key components of feasibility. Setting and participants Phase 1a (intervention adaptation) The IAG included eight key stakeholders who were representatives from our PPI partners, carers and family members, people with autism and/or learning disabilities, and clinicians, along with members of the research team. Phase 1b (treatment-as-usual survey) All services for adults with autism and learning disabilities (and learning disabilities services providing support to those who also have autism); this included NHS mental health and learning disabilities services, and the independent and charitable sector, including social enterprises within the UK. The total of number of survey responses was N = 76. Phase 2 (feasibility study) This single-arm non-randomised feasibility study took place within the NHS health services in England. We aimed to recruit up to 30 participants from the following NHS services across England: Coventry and Warwickshire Partnership NHS Trust, Herefordshire and Worcestershire Health and Care NHS Trust, Leicestershire Partnership NHS Trust, Solent NHS Trust, and Mersey Care NHS Foundation Trust. A total of 28 participants were enrolled, and 18% were from a non-white background, while 53.6% had severe learning disabilities. Intervention Participants within this study received up to 12 sessions of individual and manualised behaviour therapy, each lasting between 60 and 90 minutes with support from carers. The intervention was exposure therapy and was adapted for use with this population and manualised. Assessment of feasibility of delivery and acceptability of the intervention We examined the views of participants, parents/carers, and therapists to address (1) intervention accessibility and acceptability, (2) helpful/unhelpful aspects, including barriers to change, (3) the value of our adaptations, (4) relationships with therapists, (5) acceptability of consent processes, (6) acceptability of outcome measures and (7) acceptability of randomisation within a future trial. We completed semistructured interviews with seven parents/carers and eight therapists. Interviews using Talking Mats® were also completed with five autistic adults with moderate to severe learning disabilities who received the intervention to explore their experience of the intervention and their outcomes. Collection of outcome data Phase 1a (intervention adaptation) We held five meetings with the IAG and made use of consensus methods following discussion to make decisions about intervention adaptations, the content of our fidelity checklist, and our selection of candidate outcome measures. Phase 1b Questions for the TAU survey included the type of support/intervention, who, how and where it is delivered, along with dose and any modifications adapted from the TIDieR checklist. The online survey was delivered using Qualtrics (Qualtrics, Provo, UT, USA) or as a telephone interview. This phase lasted 14 months, running concurrently with Phase 1a and Phase 2. Phase 2 Participants were enrolled in the study for approximately 6 months. Participants were assessed at three times points: (1) screening for eligibility, (2) baseline assessment within 4 weeks before commencement of the intervention and (3) within 4 weeks following the completion of the intervention. Eligibility assessments included measures of adaptive behaviour, autistic symptoms, and symptoms of anxiety disorders. Our outcome assessments included measures of anxiety, emotional and behavioural problems, behaviours that challenge, and engagement within the community. Patient and public involvement and engagement Patient and public involvement and engagement was firmly and genuinely an integral part of our methodology. We partnered with the National Autistic Society (NAS), who worked collaboratively with us to adapt our intervention, along with carers, autistic people, and clinicians. They helped prepare study documentation, recruit participants, and collaboratively disseminate information about this study. Autistic people, carers and clinicians were members of the Study Steering Group and shared oversight of our project progress. Our IAG was formed of carers, autistic people and clinicians who are experienced with working with autistic people with moderate to severe learning disabilities. Results Phase 1a We successfully adapted the intervention, developed a logic model and intervention fidelity checklist, and chose outcome measures collaboratively with the IAG. Phase 1b Seventy-eight health and social care professionals responded to our survey and 76 provided data about TAU. The majority worked for the NHS. The most frequently offered anxiety intervention was described as psychological interventions, but exposure therapy was said to be infrequently provided. Respondents also described the adaptations they made to psychological interventions for use with adults with learning disability. These adaptations included: providing communication support, adjusting session content or activities, adjusting the timing, duration, frequency and number of sessions, involving carers within the intervention, or making changes to a person’s environment. The next most offered intervention was medication. Respondents also described less frequently offered interventions including speech and language therapy, occupational therapy, sensory strategies, communication training, increased staff support, touch therapy and music therapy. Four respondents indicated that physical health support was also offered as an intervention for anxiety. Phase 2 (1) Acceptability and feasibility of the intervention: the intervention was feasible to deliver and acceptable to autistic adults with moderate to severe learning disabilities, carers and therapists. Carers and therapists made some suggestions for revisions to the intervention which focused upon reinforcing the importance of consistent carer attendance during the intervention, and the inclusion of further guidance about ensuring that the intervention is person-centred by adapting the timing, frequency, and number of intervention sessions, making use of bespoke or personalised intervention materials, further guidance about delivering relaxation, and strengthening information about the nature and degree of adaptations that can be made by therapists. All suggestions were considered feasible to implement. (2) Appropriateness of outcome measures: percentage of missing data across the outcome measures was low and ranged from 0% to 2.38% and carers completed 100% of all outcome measures. However, carers commented that some of the items were repetitive, and some said they had difficulties answering some questions. However, others said they were acceptable and easy to complete. (3) Feasibility and acceptability of consent and associated processes: carers indicated that the study participant information sheets and associated processes were clear, helpful, and straightforward. Seventy-nine per cent of autistic participants with moderate to severe learning disabilities were judged to lack capacity to make a decision about taking part in this study. On average, it took nearly 5 weeks to seek consultee advice and enrol these participants. (4) Factors that facilitate or challenge the implementation of our intervention: autistic participants with moderate to severe learning disabilities indicated that they liked coming to the intervention sessions and the information booklets that were used during the intervention. They also indicated that they liked some core aspects of the intervention (e.g. fear ladders, relaxation, visual schedules). Carers indicated that the intervention facilitators were adaptations to meet individual needs, the experience of attending therapy and a positive therapeutic relationship with the therapist. Therapists reported that the intervention facilitators were the inclusion of a clear structure, therapist understanding of people with learning disabilities, carer understanding and engagement, effectively meeting carer need, using adapted materials, high-quality training in the intervention, access to supervision, specific aspects of the intervention (e.g. preference assessments, reinforcement, carer-only sessions, positive therapeutic relationship), and intervention flexibility. Carers reported that the key barriers were not directly attributable to the intervention (e.g. illness, holidays, or lack of staff), or were related to challenges accessing intervention material to be used during exposure, or difficulties with using the intervention with some individuals due to additional complexity, the quantity of information provided, and the time commitment required. Therapists suggested that the barriers were challenges adapting relaxation techniques, difficulties with participant engagement and motivation, different carers attending intervention sessions, difficulties with some intervention components with some individuals, quantity of information, and behaviours that challenge. Conclusions The BEAMS-ID intervention was judged to be feasible to deliver and acceptable to autistic adults with moderate to severe learning disabilities, carers and therapists. Carers and therapists made some helpful suggestions for revisions which can be easily incorporated into the existing manualised intervention with minor revision. This study took place during the COVID-19 pandemic and the recruitment of participants during Phase 2 was at a lower rate than anticipated, considering that the study was funded prior to the onset of the pandemic. Nevertheless, 93% of the planned sample size was successfully recruited, and it was noted that the accrual rate improved during the summer of 2022 and was higher within sites who joined towards the end of the study period. The participant attrition rate was low and not attributable to the intervention or study processes. This study benefited from genuine patient and public involvement and engagement during the adaptation of the intervention, development of fidelity checklist and logic model, choice of outcome measures and study management. Following minor revisions to the intervention, and further consideration of outcome measures based upon carer feedback, the BEAMS-ID intervention should be tested in a randomised trial. Protocol The study protocol is available from https://fundingawards.nihr.ac.uk/award/NIHR129804. Study registration This study is registered as ISRCTN12637590. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR129804) and is published in full in Health Technology Assessment; Vol. 28, No. 72. See the NIHR Funding and Awards website for further award information.

Background: During the COVID-19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood. Method: Between December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the COVID-19 pandemic, including questions on Internet use. We draw on the findings of this UK-wide study to explore the digital participation of the people with PMLD during the pandemic. Findings: Around half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives. Conclusion: Around half of the people surveyed participated in digital activities during COVID-19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them.

The prevalence of anxiety is higher in autistic young people, compared to neurotypical youths. However, the nature of worry in autistic young people is under-researched. Transition from secondary school is a time of change and can be challenging for autistic adolescents. This project explored the content and emotional impact of worries in neurotypical and autistic young people during transition. Twenty-two autistic people and 22 neurotypical people, aged 16-18, were recruited from mainstream schools. Participants completed a novel task to identify and explore the nature of their main worries. The participants' worry frequency and distress levels in relation to their most salient concerns, and their anxiety levels, were measured. Content analysis highlighted similarities and differences between the two groups' worries. Both groups worried about failure and their prospects of further education. Autistic people were more concerned about change and friendship, whereas more salient worries for neurotypical individuals were about work and money. Autistic people were more distressed by their worries than neurotypical individuals. Findings regarding the nature of autistic young people's worries may help inform interventions. Moreover, asking autistic people about their worries as they leave school may help to address their concerns, ease their transition and reduce distress.

The tacit practical knowledge of psychologists and support staff to foster a real connection between support staff and people with intellectual disabilities and challenging behaviour was explored. Therefore, six dyads comprising individuals with intellectual disabilities and challenging behaviour and their support staff were video recorded during joint engagement in an activity. To tap into the implicit knowledge of professionals about when staff have 'a real connection' with a person with an intellectual disability, 10 psychologists and 10 support staff were asked to pinpoint these moments in the pre-recorded video compilation. They also shared their interpretations about what they considered to be a real connection. The results displayed that participants designated real connections as occurring when they noticed concrete interactions taking place. Based on thematic analysis of the data, four themes were identified that encapsulated what professionals deemed to be a real connection. In conclusion: joint engagement in an activity appears to be a context that fosters opportunities for real connection. Furthermore, support staff should adopt a sensitive attitude and create a safe atmosphere, to establish real connections.

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.

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.

Background Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. We conducted 42 semi-structured interviews with adults with intellectual disabilities who display aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors in addressing aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions in adults with intellectual disabilities. Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions leading to reduction in aggressive challenging behaviour in this population.

Background: The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands. Method: A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically. Results: Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures. Conclusions: Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak.

Background: At the start of the COVID-19 pandemic, some parents in the Netherlands decided to bring their offspring with intellectual disabilities, who normally live in residential care, home. The present study explored why the mothers decided to bring their offspring home. Method: Interviews were carried out with seven mothers of adults with intellectual disabilities. An interpretative phenomenological approach was used to establish in-depth accounts of the mothers' experiences. Results: The analysis yielded three overarching themes: (a) Families are indispensable; (b) the complex role of being a mother of a child with intellectual disabilities; and (c) Who is looking out for our offspring during COVID-19? Conclusions: The mothers experienced a strong sense of wanting to do what was best for their offspring with intellectual disabilities during COVID-19. The study provides insight into why mothers remain involved in the care for their offspring and the complexity of navigating lifelong care responsibilities.

Background: The Family Network Method -- Intellectual Disability (FNM-ID) was used to compare perspectives of people with mild intellectual disability and their support workers on family networks of people with intellectual disability. Method: 138 participants with mild intellectual disability and support workers were interviewed, using the FNM-ID. Paired t-tests were used to examine differences in perspectives. Multiple regression analyses were used to examine divergence in perspectives. Results: People with mild intellectual disability perceived their family networks to be larger and to provide more support than support workers did. Living in a residential setting and having higher levels of externalising behaviour were associated with differences in perspectives, whereas a higher level of internalising behaviour was associated with more similar views. Conclusions: Individuals with intellectual disability and support workers are unlikely to provide the same information about family networks of people with mild intellectual disability. Behavioural and emotional problems were associated with divergence in perspectives.

The importance of public administration (PA) education and training is obvious, any effective public administration system needs an influx of a new and well-educated workforce. Compared to the (relatively) better situation in other Central and Eastern European countries, the Czech Republic and Slovakia represent a very specific case – the falling number of students in PA programs threatens the existence of the only programs with international accreditation (those at Masaryk University Brno and Matej Bel University in Banska Bystrica). The aim of this paper was to investigate the reasons why so few students apply and enroll in these EAPAA-accredited programs. Qualitative research is used to achieve this goal. In the opinion of the program chairs and our secondary analysis, there are multiple factors behind the very low level of demand which critically threatens the existence of the best master programs in the countries studied. A very specific issue that appears to be unique for both countries is free public university education with unregulated demand. Such an environment, combined with the performance- based funding of public universities and other higher education institutions, where the number of students is a decisive factor in the amount of the public grant to the university, generates an oversupply of places offered to secondary school graduates. The role of other potential barriers for the interest to study public administration is catalyzed by the ‘oversupply’ conditions. The questionnaire, the statements of program chairs, and our secondary analysis confirm that there is a role to be played by monitoring other potential barriers — the fact that programs are run in economics faculties, limited trust in politicians, government and public administration, the system of access to the civil service and salary levels in the public sector.

Background: Health professionals were trained to deliver adapted psychological interventions for depression to people with learning disabilities and depression alongside a supporter. Exploring the delivery of psychological interventions can help increase access to therapy. Method: Twenty-seven participants took part in six focus groups, and the data were subject to a Framework Analysis. Results: The structure and focus of the manualised therapies, and the use of specific techniques were perceived as key to service-user engagement. Supporters' involvement was valued by therapists if they had a good relationship and regular contact with the individual they supported. Regular clinical supervision was regarded as vital in understanding their role, assessing progress and delivering the interventions. Conclusions: The findings highlight that health professionals can embrace a focussed therapeutic role and increase access to psychological therapies for people with intellectual disabilities.

Background: Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities. Method: A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed. Results: Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed. Conclusions: More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships.

Background: Success of psychosocial interventions in reducing aggressive challenging behaviour is likely to be related not only to mechanistic aspects, but also to therapeutic and system factors. The study aims to examine the facilitators and barriers that influence whether psychosocial interventions for aggressive challenging behaviour in adults with intellectual disabilities lead to positive change. Methods: We conducted 42 semi-structured interviews with adults with intellectual disabilities and aggressive challenging behaviour, family/paid carers, and professionals engaged in or delivering a psychosocial intervention across the UK. Data were analysed thematically using a framework approach. Results: Stakeholders considered therapeutic and supportive relationships and personalised care as facilitating factors of psychosocial interventions to address aggressive challenging behaviour. The operational structure of community intellectual disability services and conflicting expectations of professionals and carers were the main contextual barriers that impeded the implementation of psychosocial interventions addressing aggressive challenging behaviour in adults with intellectual disabilities. Conclusions: Findings highlight the valued components that maximise positive change in adults with intellectual disabilities who display aggressive challenging behaviour. Several operational adjustments including referral criteria, roles of professionals and workforce issues need to be addressed in services to maximise the implementation of psychosocial interventions to reduce aggressive challenging behaviour in adults with intellectual disabilities.

Background: Evidence and awareness of the importance of culturally adapting psychosocial interventions is growing. The aim of this paper is to systematically review studies on cultural adaptations of psychosocial interventions for parents and their children with intellectual disabilities, in low- and middle-income countries. Methods: Studies were identified through electronic databases and searching bibliographies. The quality and cultural adaptations of thirteen studies focusing on parental trainings were analysed using standardised tools and frameworks. Results: Findings suggest interventions reduce the risk of depression and stress and increase coping strategies and positive perceptions of family functioning. Parenting skills training may improve parent-child interactions and child development. However, these benefits should be interpreted cautiously due to methodological shortcomings. Most studies described efforts to make appropriate cultural adaptations to the interventions, but these adaptations were not comprehensive. Conclusion: High-quality cultural adaptations are crucial to providing meaningful interventions in different parts of the world.

Background: Based on self-reported social capital, different typologies of family networks of people with intellectual disabilities were examined. Associations between behavioural and emotional problems or well-being and typologies were investigated. Method: 137 participants with mild intellectual disability were interviewed using the Family Network Method-Intellectual Disability to assess their emotionally supportive family relationships. Data on participants' well-being and behavioural and emotional problems were also gathered. Latent class analysis was used to identify family typologies based on social network measures. Results: Four distinguishable typologies were identified, two supportive and two less supportive. A small association was found with behavioural and emotional problems and one of the supportive typologies. Associations with constructs of well-being were found for both supportive and less supportive typologies. Conclusions: A variety of family types were found, with implications for sensitive professional support.

Background: As life expectancy for people with an intellectual disability increases, there is a growing cohort of older father carers. This study aimed to gain a more in-depth understanding of older father carers' experiences of parenting. Methods: Semi-structured interviews were conducted with 7 older fathers (M = 63.9 years) and analysed using constructivist grounded theory. Results: Three conceptual categories were identified. "Wearing different hats: how fathers' sense of identity had altered over the years. "Family comes first": importance placed on the family unit. "Getting on in years": the challenges faced by ageing fathers parenting their son/daughter. Conclusions: Fathers re-evaluated their priorities and found a new identity in their parenting role, although they continued to see themselves as secondary carers. Fathers worried about the future as their health declined but drew strength from the benefits they had derived and the challenges that they had overcome to do their best for their son/daughter and their family.