Online social connections and Internet use among people with intellectual disabilities in the United Kingdom during the COVID-19 pandemic.

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.

Understanding experiences of 'Gig Buddies': A befriending scheme for people with intellectual disabilities.

BACKGROUND: Research into befriending for people with intellectual disabilities is limited. This study aimed to explore the impact, mechanisms of change, and limitations of a befriending scheme for adults with intellectual disabilities and/or autism. METHODS: Participants were recruited using convenience sampling. Thirteen individuals with intellectual disabilities and/or autism were interviewed and data thematically analysed. RESULTS: Four themes were generated: 'Something fun for me'; 'A good connection'; 'Increasing independence'; and 'A life less quiet'. Befriending had direct benefits through the activities undertaken and the befriending relationships themselves being fun and reducing isolation. Befriending facilitated belonging, improved access to mainstream activities, and fostered independence by providing safety and support. The importance of shared interests and external support for the relationship was highlighted. CONCLUSIONS: Positive outcomes of befriending were found, supporting existing literature and revealing new information from the voices of participants with intellectual disabilities themselves.

The effect of an e-intervention on intellectual disability stigma among Nigerian and Kenyan internet users: a comparative randomised controlled trial.

Introduction: The negative consequences of stigma for the wellbeing of people with disabilities have raised public and global health concerns. This study assessed the impact of an e-intervention to reduce intellectual disability (ID) stigma among Nigerian and Kenyan internet-users. Method: Participants aged 18+ and citizens of Nigeria and Kenya were recruited through online advertising. Qualtrics, a web survey platform, randomly assigned (1:1) participants to watch either a short experimental or control film, while masked to their assignment. The experimental film featured education about ID and indirect contact. The control film was on an unrelated topic. Their attitudes were measured on three dimensions (affect, cognitions and behaviour) at three time points (baseline, post intervention and one-month follow-up). Between October 2016 and April 2017, 933 participants were randomised, 469 to the experimental condition and 464 to the control condition. Of these, 827 (89%) provided pre-and post-intervention data but only 287 (31%) were retained at follow-up. Results: An intent-to-treat analysis revealed that participants in the experimental but not the control condition showed a positive shift in their attitudes towards people with ID over time. Their willingness to interact with people with ID increased post-intervention. Discussion: A brief intervention that integrates education and indirect contact can make an effective contribution to efforts to reduce stigma faced by people with ID in Africa. Trial registered with the ISRCTN trial registry (number ISRCTN92574712).

'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults.

LAY ABSTRACT: 'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.

Digital adaptation of the Standing up for Myself intervention in young people and adults with intellectual disabilities: the STORM feasibility study.

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.

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.

Psychological and social outcomes of befriending interventions for adults with intellectual disabilities: A systematic review.

BACKGROUND: Befriending is an intervention intended to provide companionship and support to socially isolated populations. This review aimed to understand the key characteristics and psychological and social outcomes of befriending interventions for adults with intellectual disabilities. METHODS: Systematic searches of electronic databases (PsycINFO, MedLine and Web of Science) identified 11 studies for inclusion. A narrative synthesis of the findings was completed, along with critical appraisal of study quality. RESULTS: Increased community participation, positive changes to social networks and mood were frequently reported outcomes for befriendees. Increased knowledge, new experiences and opportunities to 'give back' were most reported for befrienders. CONCLUSIONS: The review highlighted that existing research in this field is limited in scope and methodologically diverse. Future research should focus upon the effectiveness and long-term impact of befriending interventions, understanding the mechanisms of change, and eliciting the views of people with intellectual disabilities on their experiences.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia.

OBJECTIVES: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. METHODS: Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. RESULTS: Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. CONCLUSIONS: The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.

Standing up for Myself (STORM): Adapting and piloting a web-delivered psychosocial group intervention for people with intellectual disabilities.

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

Development of stigma-related support for autistic adults: Insights from the autism community.

LAY ABSTRACT: Many autistic adults experience public stigma, which refers to negative attitudes and treatment from others. Because of that, some autistic adults may also apply unhelpful beliefs to themselves, which is known as internalised stigma. There is some evidence that both public stigma and internalised stigma are linked to poorer mental health in autistic adults. Clearly, it is crucial to change how society thinks and acts towards autistic people. There are several programmes that are trying to do this. But as change can be slow, support may also be needed to help autistic people cope with and challenge stigma. Using an online survey, we gathered the views of 144 autistic adults and parents/caregivers of autistic people in the United Kingdom on whether a stigma support programme for autistic adults is needed and, if so, what it should 'look' like. Most participants felt it was important for autistic adults to have support in managing stigma because of the harmful effects that stigma has on mental health and the challenges that autistic adults face in disclosing their diagnosis. However, participants were also concerned that such a programme could convey the message that autistic people, rather than society, need to change. Participants suggested that the programme should be positive and practical, helping autistic adults to understand and accept themselves, as well as learn context-specific strategies for responding to stigma and/or disclosing their diagnosis. They also stressed that the programme should be flexible and inclusive, recognising that autistic adults have very different needs and preferences.

Stigma among UK family carers of people living with dementia.

BACKGROUND: Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. AIMS: To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. METHOD: The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. RESULTS: The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). CONCLUSIONS: The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.

'Standing up for Myself' (STORM): Development and qualitative evaluation of a psychosocial group intervention designed to increase the capacity of people with intellectual disabilities to manage and resist stigma.

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.

A systematic review on autistic people's experiences of stigma and coping strategies.

Autism can be understood as a concealable stigmatized identity. This is the first systematic review to synthesize the literature on autistic people's experiences of stigma and coping strategies. 2877 studies were screened and 27 were included in this review. The reviewed literature demonstrates that autistic individuals are acutely aware of being stereotyped, judged, and discriminated by others. Autistic people also show signs of internalizing stigma, rendering them more vulnerable to low self-worth and poorer mental health. To manage the impact of stigma, the included studies suggest that autistic individuals may use these strategies: concealment and camouflaging, selective disclosure and self-advocacy, as well as positive reframing and reconstructing identity. However, the evidence is limited and mixed in terms of how helpful and effective these strategies are. Future studies should include autistic populations with a wider range of intellectual abilities and explore interventions that can support autistic people in managing stigma to supplement interventions that seek to reduce stigma towards autistic people. The power of language in perpetuating and challenging stigma also has important implications for research and practice, underscoring the need for researchers and practitioners to reflect carefully on the messages they are communicating about autism.

A mixed methods exploration of "Creativity in Mind", an online creativity-based intervention for low mood and anxiety.

BACKGROUND: Within the current context of a global pandemic, the value of the Internet has been greatly elevated for many people. This study is an investigation into a 30-day online intervention called Creativity in Mind (CIM). AIMS: To provide a preliminary indication of the relationship between participation in CIM and change in mood symptoms and wellbeing. METHODS: A co-produced mixed methods design was used to evaluate CIM. Data was obtained from 55 participants. Each day for 30 days participants received a predetermined creative challenge that they were encouraged to complete and share within the group. Measures of mood and wellbeing were collected at three time points, including a 3-month follow-up. Qualitative interviews were undertaken with 18 participants and analysed using framework analysis. RESULTS: Scores on mood and wellbeing measures showed an overall significant improvement following completion of the programme. However, only a small number of participants demonstrated clinically significant improvement (14%) or deterioration (5%). The qualitative data indicated that CIM was experienced positively, with some negative emotions arising from the volume of interactions and negative comparisons made between participants. CONCLUSIONS: Preliminary results demonstrate that the pattern of clinically significant change across individual participants was comparable to other psychological therapy.

A qualitative exploration of stigma experience and inclusion among adults with mild to moderate intellectual disability in an Indonesian context.

BACKGROUND: People with intellectual disability are among the most stigmatised groups in society. There is a paucity of studies reporting on how stigma is experienced in low- and middle-income countries. This study aims to explore the experience of stigma among adults with mild/moderate intellectual disability and the extent of their inclusion in Indonesian society. METHOD: Fifteen adults with mild/moderate intellectual disability were purposively recruited from three service providers and were interviewed using a semi-structured interview schedule. The data were analysed using thematic analysis. RESULTS: The findings suggest that adults with intellectual disability experience stigma in multiple settings (family, school, community), have limited access to social activities, and internalised the experienced stigma. CONCLUSION: This study adds to the international understanding of stigma experienced by adults with mild/moderate intellectual disability in daily life and their inclusion in society in a middle-income country.

Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia.

BACKGROUND: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change. METHOD: A 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity. RESULTS: Seven measures were identified from the review, but most were poor quality (Terwee range: 0-4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721-.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity. CONCLUSION: Stigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.

Attitudes of key professionals towards people with intellectual disabilities and their inclusion in society: A qualitative study in an Indonesian context.

This study aimed to explore key professionals' attitudes towards people with intellectual disability (ID) and inclusion of said people in the community. Eighteen participants from three professional groups, comprising health practitioners (medical doctors, psychologists), mainstream/special education teachers, and religious leaders (Islam, Catholicism, Protestantism, Hinduism, and Buddhism) were recruited. Semistructured interviews, aided by two vignettes depicting mild and severe ID, were conducted. Thematic analysis was used to analyse the data. Seven themes were identified exploring: perceived causes; use of terminology; attitudes towards people with ID; attitudes towards inclusion, religion and ID; family-centric support; and challenges faced by people with ID in a wider context. Perceived capabilities of persons with ID were found to influence attitudes towards people with ID and their inclusion. Availability and accessibility of good quality services were also found to influence attitudes towards the inclusion of people with ID. Cultural factors related to attitudes towards ID are discussed.

Intellectual disability literacy and its connection to stigma: A multinational comparison study in three European countries.

Article 8 of the UN Convention on the Rights of People with Disabilities requires governments around the globe to raise awareness on issues of disability in their societies, combatting stereotypes, prejudices and harmful practices. Little comparative data is available on lay people's social representations of intellectual disability and associated stigma, which could inform actions in line with the convention. The present study compared intellectual disability literacy and stigma among adults in the general population in the UK, Austria and Germany (N = 1046), and examined the effects of providing an intellectual disability label on these outcomes. Although participants came from highly developed European countries and prior contact with people with intellectual disabilities was common, the findings pointed to some striking differences between countries. Participants in Austria and Germany were much less likely than those in the UK to identify symptoms of a possible intellectual disability in an unlabelled vignette. They were also much more hostile towards social contact, a difference that was maintained when participants were informed of the intellectual disability label. Labelling showed controversial effects on stigma, both in its effects on social distance and on beliefs about suitable causes and interventions. Overall, the social acceptance of people with intellectual disabilities appears to be much less advanced in Austria and Germany than in the UK, and awareness of intellectual disability much lower, indicating a need for action at societal level.

"Who to Tell, How and When?": Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis.

OBJECTIVE: This study describes the adaptation of Honest, Open, Proud (HOP), to develop an empowerment intervention supporting disclosure decision-making for dyads of people living with dementia and their chosen supporter. METHODS: Medical Research Council guidelines for developing complex interventions informed intervention development and feasibility testing. This included identifying the evidence base and theory (establishing HOP theory of change, a systematic review on decision-making in dementia, a stakeholder consultation), modelling the intervention materials with research experts (creation of version 1.0) and experts by experience (creation of version 2.0), and pilot testing the intervention recording participant observations and facilitator reflections. The final version of the intervention materials was developed with experts by experience of dementia where the accessibility of language and appropriate styles of facilitation were the focus. RESULTS: The concept of the intervention was strongly endorsed by respondents of the stakeholder consultation (209/226). Stakeholder preferences included face-to-face delivery, a manualized workbook approach and the inclusion of the primary carer during intervention delivery. Recruitment for intervention groups took place in non-NHS settings (2 small groups recruited) and NHS settings (no groups recruited). In non-NHS settings, 7 dyads agreed to take part in one of two intervention groups. Both intervention groups had over 70% attendance by participants (group 1: 72.2% group 2: 87.5%). CONCLUSION: The concept of an intervention to support diagnostic disclosure was endorsed by stakeholders; however, recruitment was challenging; the "who to tell, how and when?" intervention has the potential to fill a gap in the post-diagnostic pathway.