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.

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.

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.

'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.

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.

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.

Supporting mental health disclosure decisions: the Honest, Open, Proud programme.

The stigma associated with mental health problems leaves many feeling they have to 'hide' their difficulties. Supporting them in making disclosure decisions can potentially improve well-being, reduce self-stigma and support recovery processes. In this editorial we discuss the case for interventions designed for this purpose and present one prominent programme: Honest, Open, Proud.

Thought-feeling discrimination in people with dementia: adaptation and preliminary validation of the first dementia-specific measure.

OBJECTIVE: There is emerging evidence that cognitive behavioral therapy (CBT) can be effective for treating anxiety and depression in people living with dementia (PLWD). Discriminating between thoughts and feelings is a critical element of CBT and also of relevance to emotional understanding more generally. The aim of the present study was the structured adaptation and preliminary validation of an existing measure of thought-feeling discrimination for use in PLWD. METHODS/DESIGN: The Behavior Thought Feeling Questionnaire (BTFQ) was adapted via expert and service-user consultation for use in PLWD. One hundred two PLWD and 77 people aged over 65 years who did not have measurable cognitive impairments completed the adapted measure along with two measures of emotional recognition and reasoning. The factor structure of this measure was examined and the measure reduced. RESULTS: Factor analysis suggested a two-factor solution with thought and feeling items loading on separate factors. The behavior items were not included in scoring due to high cross-loading and ceiling effects, leaving a 14-item measure with two subscales. Thus, an adapted measure was created (named the BTFQ-D), which showed moderate convergent validity in the PLWD but not the older adult sample. Both thought and feeling subscales showed good internal consistency. CONCLUSIONS: The BTFQ-D showed preliminary validity as a measure of thought-feeling discrimination in PLWD. It may have utility in measuring readiness for CBT as part of clinical assessment. Further validation is required.

The nature of decision-making in people living with dementia: a systematic review.

Objective: The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia.Methods: A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvementResults: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate (n = 10) to high (n = 5) quality ratings. Participants were predominantly people living with dementia (n = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources).Conclusion: Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers.

Cognitive mediation in people with dementia: Development, structural, and construct validity of the first dementia-specific measure.

OBJECTIVES: Anxiety and depression are common and deleterious comorbidities in people living with dementia (PLWD). Cognitive behavioural therapy (CBT) is one of the few promising treatments; however, it is unclear whether PLWD have the necessary prerequisites to engage in this. Having an understanding of cognitive mediation, that a thought mediates the relationship between an antecedent event and its emotional consequence, is key for engaging with CBT and is also a critical component of emotion regulation. There are no measures of this construct validated for PLWD. This study aims to adapt and validate an existing measure for this population. A secondary aim is to assess its applicability in older adults (OA) without a recognised neurocognitive impairment. METHODS: A measure of cognitive mediation was adapted via expert and service user consultation for use in PLWD. A total of 102 PLWD and 77 OA without neurocognitive impairments completed the adapted measure along with two measures of emotion recognition and reasoning. Factor structure was examined separately in both samples, and the measure reduced, with convergent validity assessed. RESULTS: A final measure of 10 items (named the CM-Dem) was subject to factor analysis yielding a single factor solution. The measure showed good psychometric properties in PLWD, including good model fit, high internal consistency, inter-rater reliability, and moderate convergent validity with related constructs. In contrast, poor validity was found in OA, especially a lack of convergent validity. CONCLUSIONS: The CM-Dem has clinical and research utility as a measure of cognitive mediation in PLWD, but less so in OA.

The psychological and social impact of self-advocacy group membership on people with intellectual disabilities: A literature review.

BACKGROUND: There is no one agreed definition of self-advocacy, but it can be taken to include actions and concepts such as standing up for one's rights and self-determination. METHOD: A review of studies examining the psychological and social impact of self-advocacy group membership on people with intellectual disabilities was conducted. Systematic searches of electronic databases (PsycINFO, Scopus, Web of Science and ProQuest's Sociology Database), and manual searches of reference lists and citations, identified 12 studies. RESULTS: "Empowerment" and "increased confidence" were frequently reported outcomes. "Belonging," increased opportunities for social connections and changed self-identity were also key themes. CONCLUSIONS: Limitations of the review included difficulty categorizing outcomes, and limitations of the evidence base included a lack of quantitative studies. Implications of the review include an observation that the role of self-advocates in the research literature could be extended to the co-construction of research agendas.

How do people with intellectual disabilities construct their social identity? A review.

BACKGROUND: A 2005 review by Beart, Hardy and Buchan, asking how people with intellectual disabilities view their social identities, has been widely cited, indicating this important topic needs an updated review. This review covers research on how people with intellectual disabilities view their ascribed label; to what extent they ascribe it to themselves; and whether they recognize it as devalued in society. METHOD: Rapid review methodology using PsycINFO, citation- and hand-searching identified relevant studies. RESULTS: The 16 studies identified indicate that the majority are aware of their ascribed label, or acknowledge they are "different". Others reject it, focusing on alternative attributes or roles. Most recognize others view the label negatively and express feelings of shame, anger and powerlessness. CONCLUSIONS: The review advances our understanding of social identity formation in people with intellectual disabilities, with implications for future research and practice to support construction of positive social identities and stigma resistance.

Mental health problems among clinical psychologists: Stigma and its impact on disclosure and help-seeking.

OBJECTIVE(S): To assess the prevalence of personal experiences of mental health problems among clinical psychologists, external, perceived, and self-stigma among them, and stigma-related concerns relating to disclosure and help-seeking. METHOD: Responses were collected from 678 UK-based clinical psychologists through an anonymous web survey consisting of the Social Distance Scale, Stig-9, Military Stigma Scale, Secrecy Scale, Attitudes towards Seeking Professional Psychological Help Scale-Short Form, alongside personal experience and socio-demographic questions. RESULTS: Two-thirds of participants had experienced mental health problems themselves. Perceived mental health stigma was higher than external and self-stigma. Participants were more likely to have disclosed in their social than work circles. Concerns about negative consequences for self and career, and shame prevented some from disclosing and help-seeking. CONCLUSIONS: Personal experiences of mental health problems among clinical psychologists may be fairly common. Stigma, concerns about negative consequences of disclosure and shame as barriers to disclosure and help-seeking merit further consideration.

Mental health disclosure amongst clinical psychologists in training: Perfectionism and pragmatism.

OBJECTIVES: This study investigated the incidence of lived experience of mental health problems amongst UK-based trainee clinical psychologists and factors associated with anticipated disclosure for trainees both with and without lived experience. METHODS: A web-based survey comprising the Multidimensional Perfectionism Scale, an adapted version of the Perceived Devaluation and Discrimination Scale, and questions about lived experience and anticipated likelihood of disclosure. RESULTS: The survey was completed by 348 trainees across 19 UK training institutions. Sixty-seven percent reported lived experience of a mental health problem. For these trainees, there was no difference in anticipated likelihood of disclosing to different recipient types after controlling for maladaptive perfectionism. However, across all participants, anticipated disclosure was associated with maladaptive perfectionism, temporal proximity, anticipated stigma (past), and recipient type. Anticipated stigma (present) was not associated with anticipated disclosure. CONCLUSIONS: Results support an approach to communicating about mental health disclosure that incorporates responsibility, interdependency, and transparency. Suggestions for further research are discussed.

Family and community in the lives of UK Bangladeshi parents with intellectual disabilities.

BACKGROUND: Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. METHOD: Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. RESULTS: Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. CONCLUSIONS: Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent.

The experiences of high intensity therapists delivering cognitive behavioural therapy to people with intellectual disabilities.

BACKGROUND: People with intellectual disabilities (ID) should be able to access the Improving Access to Psychological Therapies (IAPT) programme, currently a main provider of mainstream mental health services in England. IAPT offer cognitive behavioural therapy (CBT) to individuals experiencing mental health problems, although its effectiveness for people with ID, when delivered within IAPT, is unclear. METHOD: Ten high-intensity therapists took part in semi-structured interviews, analysed using thematic analysis, regarding their experiences of delivering CBT to people with ID in IAPT. RESULTS: The rigidity of the IAPT model appears to offer a poor fit with the needs of people with ID. Therapists appeared uncertain about how to modify CBT and highlighted training and service development needs. CONCLUSIONS: Findings suggest barriers to accessing IAPT largely remain unaddressed where people with ID are concerned. Services may need to reconsider what constitutes appropriate reasonable adjustments to ensure equitable access.

The effect of brief digital interventions on attitudes to intellectual disability: Results from a pilot study.

BACKGROUND: Evidence on the effects of contact and education based interventions on attitudes is limited in the intellectual disability field. This study compared the effects of brief interventions with different education, indirect and imagined contact components on lay people's attitudes. MATERIALS AND METHODS: 401 adult participants were randomised to six digital brief interventions consisting of different combinations of education, indirect and imagined contact. Their attitudes, intergroup anxiety and social distance were assessed post-intervention and at four to six-week follow-up. RESULTS: An intervention combining film-based education about intellectual disability and indirect contact had small positive effects on all three outcomes. Social distance was further reduced with the addition of a positively toned imagined contact task. These effects were maintained at follow-up. CONCLUSIONS: A brief film-based digital intervention can have small positive effects on attitudes to people with intellectual disabilities. These may be enhanced by adding positive imagined contact.

Explicit and implicit attitudes towards people with intellectual disabilities: The role of contact and participant demographics.

BACKGROUND: Intellectual disability research has concentrated on self-reported explicit attitudes with little focus on implicit attitudes. Such attitudes are evaluations which occur with or without conscious awareness, respectively. This investigation examined participants' (N = 234) attitudes towards individuals with intellectual disabilities with reference to participants' gender, age, level of education, frequency of contact and closeness. METHOD: UK adults completed explicit (ATTID) and implicit attitude (ST-IAT) measures, and provided demographics via an online survey. RESULTS: Participant demographics predicted explicit attitudes-with differing cognitive, affective and behavioural associations. Contact frequency was most significant. Implicit attitudes were not predicted, evidencing implicit-explicit attitude differences. CONCLUSIONS: The results encourage more implicit-explicit attitude relationship research regarding disability. The associations between demographics, contact and implicit attitudes should be explored further. Research should question whether implicit attitudes reflect participants' true beliefs-denoting less importance to demographics-or whether they reflect wider societal values rather than individuals' attitudes.