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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.

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: 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.

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: 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.

Introduction: Families have a significant role in the lives of people with intellectual disabilities and challenging behaviors. However, it is not clear how actively families are involved when people with intellectual disabilities and challenging behaviors are living in out-of-home care. This scoping review explored the frequency and type of family involvement in the application of a person-centered approach in the care for people with intellectual disabilities and challenging behaviors. Methods: Authors conducted electronic searches through six databases: Embase, Medline, Web of Science, PsycINFO, Cochrane Central, and Google Scholar (2005 to 2019) and evaluated relevant publications. Results: Based on the 15 articles identified, only five articles report on family involvement. In addition, frequency of contact, and how family is involved appears to differ between different person-centered approaches. Conclusion: More active family involvement in person-centered approaches for people with intellectual disabilities and challenging behaviors is recommended.

Background: Young people with Down syndrome and their families often contend with social stigma. The present study examined this issue from their mothers' perspective. Methods: An interpretative phenomenological approach (IPA) was used to explore mothers' perceptions of their child's developing awareness of their disability and associated social stigma. Interviews were carried out with nine mothers of young people with Down syndrome aged 9-16 years old. Results: All mothers were sensitive to the stigmatized status of Down syndrome and were at pains to protect their child from becoming aware of it. Some mothers had talked about Down syndrome with their child. Other mothers carefully monitored their child for signs that they were ready to talk about it. On the surface, all mothers believed that their child had a limited insight into Down syndrome and stigma but detailed discussion revealed more complex insights. Conclusion: Mothers expressed uncertainty and anxiety about when and how to talk to their child about Down syndrome.

Background: There is a growing interest in adapting third-wave therapies such as mindfulness for people who have intellectual disabilities. This study explored their ability to generate and use a compassionate image. Method: Nineteen people with an intellectual disability and twenty people without were recruited from further education colleges. A compassion-focused therapy technique was adapted to help participants generate their own compassionate image, and examine whether they could use their images in potentially distressing situations. Results: With appropriate support, participants with intellectual disabilities were just as able as those without disabilities to generate their own compassionate image. They were also able to generate self-soothing statements. Conclusions: The participants' success in generating compassionate images suggests this approach may have clinical utility with people who have intellectual disabilities. The next question is whether this client group can use this technique to deal with personally salient stressors.

Aim: This study was undertaken to investigate how young people with and without mild intellectual disabilities experience and perceive their own behavioural autonomy. Method: Fifty-six young people with mild intellectual disabilities and 49 young people without disabilities aged 16-19 participated in a novel picture card sorting task to investigate their participation in a range of activities, and the obstacles preventing them from doing so. Results: School pupils with intellectual disabilities engaged in significantly fewer activities than their typically developing peers and were more likely to state not to be allowed to. In contrast, the college students with and without disabilities were equally as likely to undertake each activity, and those with intellectual disabilities were more likely to express lack of interest in doing so. Conclusions: The move from school to college may represent an opportunity for young people with intellectual disabilities to "catch-up" with their typically developing peers.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Even though family plays a significant role in the lives of people with intellectual disability, little research has included their own views about their families. This study examined how 138 people with mild intellectual disability describe their family group, with a focus on the reciprocal nature of the emotional support in relationships with family members. Participants reported "significant" family members beyond the nuclear family, and parents were seen as the main provider of support. Only half of participants had a support relationship with siblings and just 13% of participants reported partners. About 30% of support was reciprocal, and reciprocity varied greatly with the types of family connection (e.g., siblings, peers). Implications for future research as well as practice are discussed.

Background: Cognitive impairments are often assumed to underlie individuals' difficulties with understanding health issues. However, it was predicted that socially excluded individuals would have greater difficulty gaining understanding of sensitive topics related to sexuality than other public health messages, such as alcohol use. Method: The health knowledge of 31 typically developing young people, 29 young people with mild intellectual disabilities (ID) and 23 participants with physical disabilities but no cognitive impairments was compared. Results: The largest group differences were related to more private and personal health issues, such as pregnancy/contraception. Both groups of young people with disabilities had less knowledge of pregnancy/contraception than their non-disabled peers. Thus, deficits in this sexual knowledge did not just appear to be the result of cognitive deficits. Conclusions: The findings suggest social exclusion may contribute to young people with intellectual disabilities' poorer knowledge of pregnancy and contraception. The results have implications for interventions.

Background: Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters' experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self-help therapies for depression. Method: Twenty-one purposively sampled supporters were interviewed. The semi-structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes. Results: Supporters were positive about both therapies and reported both therapy-specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions' effectiveness, and helped establish closer relationships to the people they were supporting. Conclusions: The presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population.

Background: To enhance social inclusion of people with intellectual disability, policy is aimed at increasing informal support networks. Nevertheless, staff continue to play a vital role in their support networks. Method: Six individuals with mild intellectual disability, living in community-based settings, were interviewed following a semi-structured format. In-depth accounts of participants' support experiences were established using Interpretative Phenomenological Analysis. Results: Three main themes were identified: relationships with staff placed within a personal history, relationships with staff within an organisational context, and staff support and interviewees' place in the world. Conclusions: Relationships with staff were often one of the closest and most significant social relationships participants had. As living in the community had not necessarily led to meaningful inclusion for participants, the findings point at the important role of staff in supporting and facilitating friendships and close relationships of people with intellectual disability.

Background: Informal supportive networks of individuals with intellectual disability have become increasingly important. The aim of this paper is to describe how the Family Network Method--Intellectual Disability (FNM-ID) offers a way to gather the perspective of people with mild intellectual disability on their family support. Method: The FNM is designed to explore how individuals define their family contexts, and more specifically how they perceive existing supportive relationships in these contexts. Results: By carefully piloting ways of questioning people with mild intellectual disability, systematic adaptations were made to the original FNM. Data obtained by the FNM-ID can be analysed using social network analysis. Thereby, the FNM-ID provides rich, theoretically significant information on emotional support in the family networks of individuals with mild intellectual disability. Conclusions: The FNM-ID is a useful and successfully adapted tool for other researchers and professionals to systematically explore the family support experiences of individuals with mild intellectual disability.

Individuals with severe or profound intellectual disabilities may be at a greater risk of developing mental health problems. Despite this, evidence suggests individuals can face difficulties in getting mental health support, and little is known about effective psychological therapies for this population. Hence, this study explored mothers' experiences of seeking mental health support for their offspring. Semi-structured interviews were conducted with six mothers of adults with severe or profound intellectual disabilities, who had sought mental health support for their offspring. Interviews were audio-recorded and analysed using Interpretative Phenomenological Analysis. The three main themes were 'A struggle to understand, Challenges to getting mental health support, and A mother's approach to adapting therapy.' Mothers found it difficult to recognise signs of emotional difficulties in their offspring. However, they thought that their offspring faced discrimination when accessing services, and that professionals often lacked the knowledge and skills to work with people with severe impairments. The mothers also stressed the importance of the therapeutic relationship and the need to involve carers in therapy. This study highlights the need for more appropriate mental health support for individuals with severe and profound intellectual disabilities. The findings also suggest further research is needed about adapting psychological therapies for this population.

Pupils with intellectual disabilities are one of the most bullied groups in the school system and in local communities. Moreover, young people also play a significant role in hate crimes against people with intellectual disabilities of all ages beyond the school gates. This paper describes the development of a research informed program of lessons for children in mainstream secondary schools, aimed at counteracting bullying towards people with intellectual disabilities by promoting empathy and more positive attitudes towards them. A literature review, a review of current practice, and the experiences and views of young people with intellectual disabilities and their families all contributed to the development of the program. Data from subsequent piloting and feasibility work were used to finalize the program which consists of the following five lessons concerning: (i) difference and disability, (ii) an understanding of intellectual disability, (iii) the nature and impact of disablist bullying towards people with intellectual disabilities, and (iv) opportunities for inclusion. One conclusion from this work is that that there needs to be further research to explore the impact of school-based interventions, promoting an understanding of people with intellectual disabilities, in the wider community. Teachers delivering the lessons may have greater influence than transitory campaigns to counteract bullying and promote positive attitudes towards people with intellectual disabilities. However, a first step is to ensure that teachers delivering the lessons have an understanding of people with intellectual disabilities.

Background: In the general population, the transition from adolescence to adulthood has been identified as a "high-risk" period for weight gain. There has been no research examining health behaviours over this transition in adults with intellectual disabilities. Methods/design: The feasibility of recruitment, retention and relevant health behaviours were measured in 31 adolescents with mild-moderate intellectual disabilities. Anthropometric, objective physical activity, dietary and self-determination measures were collected over a 12-month transitional period from school to adulthood. Results: Key results suggest weight and BMI increased significantly from month 6 to month 12 (p = 0.044 and p = 0.043). Waist circumference increased significantly from baseline to month 12 (p = 0.049), and from month 6 to month 12 (p = 0.03). Discussion: Recruiting and retaining young adults with intellectual disabilities over a 12-month health behaviour study is feasible. The data indicate the transition from school to adulthood may be the start of a high-risk period for weight gain.

Background: Past research suggests children with Down syndrome often lack awareness of their disability despite the visibility of their condition. Method: This study used novel tasks to investigate their insight. Twenty-eight young people with Down syndrome (aged 8-17 years) were recruited, along with control groups of 67 typically developing young people. Three tasks explored the children's awareness of Down syndrome: (a) choice of partner for social activities, (b) sorting photographs and (c) attributing positive or negative descriptors to photographs. Results: All participants expressed a preference to engage in social activities with typically developing peers. Most participants with Down syndrome identified with the typically developing person. Even though all participants attributed more positive descriptors to the photographs of the typically developing individuals, they remained positive about themselves. Conclusion: The early awareness of difference shown by young people with Down syndrome suggests this may play an important role in their developing identities.

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. 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). 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. 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. [ABSTRACT FROM AUTHOR]

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]

Having a disability, in particular, an intellectual disability, is associated with Internet non-use. This article explores how people with intellectual disabilities used the Internet across the United Kingdom during the COVID-19 pandemic. In April to May 2021, 571 adults with intellectual disabilities were interviewed. Participants most commonly used the Internet for being with family and friends, social media or doing online activities with other people. People who lived with family were the most likely to use social media; people who lived with other people with intellectual disabilities were the least likely. People who self-reported as not lonely were more likely to use the Internet for online activities with others and play video games with others. Social connections were identified as the best thing about the Internet. Many participants chose not to identify a worst thing about Internet use, while others reported issues with technology, online harm and threats to well-being. [ABSTRACT FROM AUTHOR]