Women with intellectual disabilities (IDs) face persistent health inequities, particularly in preventive services such as breast cancer screening, where participation rates remain disproportionately low. These disparities contribute to higher mortality and poorer survivorship outcomes, often linked to later-stage diagnoses. To better understand these challenges and inform the development of inclusive screening programs, this qualitative study conducted in Austria explored barriers, facilitators, and needs related to breast cancer screening from the dual perspectives of 17 women with mild-to-moderate IDs aged 45 and older and 10 caregivers. Semi-structured focus groups and interviews were analyzed thematically within a constructivist framework, integrating perspectives from both groups. Barriers included social taboos around sexuality, psychological distress, exclusion through standardized procedures, and unclear responsibility among stakeholders. Facilitators involved person-centered communication, accessible information, emotional and practical support, and familiar healthcare environments. Women with IDs expressed a strong desire for education, autonomy, and inclusion, while caregivers played a pivotal role in enabling access. These findings demonstrate that low screening participation among women with IDs is driven by systemic and organizational barriers rather than lack of health awareness or willingness to participate. Without structurally inclusive design, organized screening programs risk perpetuating preventable inequities in early detection. Embedding accessibility, clear accountability, and person-centered communication as standard features of breast cancer screening is therefore a public health priority to reduce avoidable late-stage diagnoses and narrow survival disparities for women with IDs.

BACKGROUND:People with intellectual disabilities continue to experience stigmatisation, yet little is known about how they manage or resist stigma. The present study aimed to qualitatively explore stigma resistance, including barriers to and facilitators of stigma resistance, from the perspective of self-advocates with intellectual disabilities. METHOD:Sixteen adult self-advocates participated in semi-structured virtual interviews. Thematic analysis was used to analyse interview transcripts. RESULTS:Four themes were identified: (i) asserting oneself, (ii) speaking out, (iii) using lived experience to drive change and (iv) strengthening positive identities. Perceived barriers and facilitators were linked to personal and environmental factors. CONCLUSIONS:This study advances our knowledge of how people with intellectual disabilities resist stigma. Although the research highlights the importance of individual and collective resistance, it also reminds us that work must still be done to tackle stigma within the institutional and social structures where power imbalances prevail.

Background Little is known about the prevalence of exposure to discrimination among adolescent girls with/without disability, especially in low- and middle-income countries.Methods Secondary analysis of nationally representative data collected on self-reported discrimination from 30 705 adolescent girls in 37 low- and middle-income countries in Round 6 (2017-2023) of UNICEF's Multiple Indicator Cluster Surveys (MICS).Results Our results indicated that: (i) adolescent girls with disability were 1.66 times more likely to be exposed to discrimination than adolescent girls without disability; (ii) adolescent girls with disability were at higher risk of exposure to all forms of discrimination measured; (iii) they were also significantly more likely to be exposed to discrimination if they lived in poorer households and had mothers with lower than secondary level education; (iv) there was no association between country level of human development and the magnitude of the risk of adolescent girls with disability being exposed to discrimination.Conclusions Adolescent girls with disability are at significantly increased risk of exposure to discrimination based on disability and other characteristics (e.g. age, gender). Monitoring risk of discrimination among people with disability needs to move beyond a narrow focus on disability-related discrimination.

AIMS:Type 1 diabetes stigma (T1D-stigma) refers to negative social judgement towards people living with type 1 diabetes (T1D) and is linked to poorer psychological well-being and suboptimal diabetes self management. This observational study aimed to explore sociodemographic, diabetes health and well-being factors linked to high stigma scores to inform future, targeted intervention studies. METHODS:UK-based adults (aged ≥18 years) with T1D completed an online survey comprising sociodemographic and diabetes health questions, wellbeing measures for anxiety (Generalised Anxiety Disorder Scale: GAD-7), diabetes impact (Impact of Diabetes Profile: DIDP) and depression (Patient Health Questionnaire: PHQ-9) and the Type 1 Diabetes Stigma Assessment Scale (DSAS-1). Potential relationships between sociodemographic, diabetes health and well-being factors and DSAS-1 score were identified by univariate regression and the independence of significant (p < 0.05) relationships was explored in multivariable regression. RESULTS:Of 438 participants, 96% endorsed one or more items on the DSAS-1. In multivariable regression, age (β = -0.136, p = 0.006), sex (β = 0.114, p = 0.006), BMI (β = 0.112, p = 0.023), insulin pump use (β = 0.108, p = 0.015), DIDP score (β = 0.211, p = <0.001), GAD-7 score (β = 0.192, p = 0.002) and PHQ-9 score (β = 0.195, p = 0.002) predicted DSAS-1 score. Ethnicity did not predict DSAS-1 score, nor did age at diagnosis or number of severe hypoglycaemia episodes. CONCLUSION:Most participants reported at least one instance of T1D-stigma. High DSAS-1 scores in the United Kingdom were predicted by younger age, being a woman, higher BMI, insulin pump use, higher diabetes impact and anxiety and depression scores. Future studies should further explore the impact of T1D-stigma within these groups to tailor appropriate interventions.

AIMS:Type 1 diabetes stigma (T1D-stigma), the negative social judgements towards people living with type 1 diabetes (T1D), is linked to poor psychological well-being and suboptimal diabetes self-management. This qualitative study explored the T1D-stigma experiences of adults living with T1D in the UK. METHODS:UK-based adults (aged ≥18 years) with T1D completed an online survey as part of a wider T1D-stigma study. Respondents who endorsed at least one item on the Type 1 diabetes stigma assessment scale (DSAS-1) were then invited to provide more information about their stigma experiences. Responses were analysed using framework analysis. RESULTS:The majority of respondents (96%) endorsed experiencing at least one instance of perceived or experienced stigma. A framework analysis of N = 337 participants' responses developed five themes and 19 sub-themes. The first and second themes explored the 'Sources' and 'Drivers and facilitators' of T1D-stigma. The third theme encapsulated the 'Experiences' of T1D-stigma, where participants described 'unsolicited comments and advice', 'discrimination and rejection' and 'lack of understanding'. The fourth theme encompassed the 'Impact' of T1D-stigma, where participants described its social, emotional, and behavioural impact. The final theme explored Stigma management' and described 'dealing with T1D-stigma', 'changes over time in self, society and diabetes technology' and 'protective factors in T1D-stigma encounters'. CONCLUSION:This study has provided the first systematic qualitative analysis of T1D-stigma in the UK. In line with other diabetes-related stigma research, T1D-stigma was broad in its manifestations and impact. Participants volunteered information about T1D-stigma management, despite not being explicitly asked about this, highlighting approaches that could inform future interventions.

BACKGROUND AND OBJECTIVES:Given the stigma of dementia, individuals with the condition may be wary to disclose their diagnosis to other people, both in face-to-face and digital settings. While sharing one's dementia diagnosis with others is essential for accessing valuable support for social, cognitive, and physical well-being, this area of research has largely been neglected. In this meta-synthesis, we aimed to systematically review qualitative research on the factors associated with online and offline self-disclosure in people with dementia. RESEARCH DESIGN AND METHODS:We conducted a systematic search in 6 electronic databases. Inclusion criteria comprised qualitative and mixed-methods studies describing experiences with self-disclosure in people with any type of dementia. Quality of the included studies was assessed using the Mixed Methods Appraisal Tool. The meta-synthesis was conducted in NVivo using a thematic synthesis approach. RESULTS:28 studies were included. 3 analytical themes were generated: "Concealment," "Stigma and fear," and "Taking control," the latter 2 with subthemes. Findings from this review were corroborated with people with dementia and family carers as part of Patient and Public Involvement meetings. Our findings reveal that while stigma plays a pivotal role, people with dementia can take control of the meaning of their diagnosis through self-disclosure. DISCUSSION AND IMPLICATIONS:Self-disclosure is complex and multifaceted. People with dementia, particularly those experiencing stigma, can benefit from post-diagnostic support that encompasses resources and interventions for self-disclosure. Further research is required to investigate people with dementia's disclosure decision-making process.

OBJECTIVE:A robust psychometric instrument is imperative to measure the devastating impact of self-stigma in dementia to adequately inform policy and practice. Our objective was to evaluate the psychometric properties of the Stigma Impact Scale in a global sample of people with dementia. METHOD:Data were analysed from the World Alzheimer Report including 710 participants in 42 countries who completed the SIS. Detailed psychometric analyses of the SIS included estimating reliability, convergent validity with the Warwick-Edinburgh mental Well-being Scale (WEMWBS) and the Dementia Quality of Life instrument (DQoL), the factor structure of the measure (through both exploratory and confirmatory factor analysis). RESULTS:The SIS and its subscales had 'good' to 'excellent' internal consistency (Cronbach's Alpha: 0.883-0.943). However, convergent validity correlations were not in the predicted direction; no significant correlations were noted between the SIS and the WEMWBS and DQoL. Factor analysis suggested marginal improvements in global fit indices for the observed model compared to the theoretical model, though none met the thresholds for acceptable fit. The final proposed model had three factors: rejection and secrecy, loneliness and belonging and perceived social isolation. Most SIS items were strongly endorsed by participants. CONCLUSION:The SIS is the most robustly tested instrument measuring self-stigma in dementia. The SIS has good to excellent reliability and relevance to the target population, however future work is required to improve the factor structure of the scale. Further the results of the validity testing pose a number of theoretical and empirical questions for future research.

BACKGROUND:Treatment guidelines recommend evidence-based psychological therapies for adults with intellectual disabilities with co-occurring anxiety or depression. No previous research has explored the effectiveness of these therapies in mainstream psychological therapy settings or outside specialist settings. AIMS:To evaluate the effectiveness of psychological therapies delivered in routine primary care settings for people with intellectual disability who are experiencing co-occurring depression or anxiety. METHOD:This study used linked electronic healthcare records of 2 048 542 adults who received a course of NHS Talking Therapies for anxiety and depression in England between 2012 and 2019 to build a retrospective, observational cohort of individuals with intellectual disability, matched 1:2 with individuals without intellectual disability. Logistic regressions were used to compare metrics of symptom improvement and deterioration used in the national programme, on the basis of depression and anxiety measures collected before and at the last attended therapy session. RESULTS:The study included 6870 adults with intellectual disability and 2 041 672 adults without intellectual disability. In unadjusted analyses, symptoms improved on average for people with intellectual disability after a course of therapy, but these individuals experienced poorer outcomes compared with those without intellectual disability (reliable improvement 60.2% for people with intellectual disability v. 69.2% for people without intellectual disability, odds ratio 0.66, 95% CI 0.63-0.70; reliable deterioration 10.3% for people with intellectual disability v. 5.7% for those without intellectual disability, odds ratio 1.89, 95% CI 1.75-2.04). After propensity score matching, some differences were attenuated (reliable improvement, adjusted odds ratio 0.97, 95% CI 1.91-1.04), but some outcomes remained poorer for people with intellectual disability (reliable deterioration, adjusted odds ratio 1.28, 95% CI 1.16-1.42). CONCLUSIONS:Evidence-based psychological therapies may be effective for adults with intellectual disability, but their outcomes may be similar to (for improvement and recovery) or poorer than (for deterioration) those for adults without intellectual disability. Future work should investigate the impact of adaptations of therapies for those with intellectual disability to make such interventions more effective and accessible for this population.

Type 1 diabetes stigma (T1D-stigma), the negative social judgements towards people living with type 1 diabetes (T1D), is linked to poor psychological well-being and suboptimal diabetes self-management. This qualitative study explored the T1D-stigma experiences of adults living with T1D in the UK. UK-based adults (aged ≥18 years) with T1D completed an online survey as part of a wider T1D-stigma study. Respondents who endorsed at least one item on the Type 1 diabetes stigma assessment scale (DSAS-1) were then invited to provide more information about their stigma experiences. Responses were analysed using framework analysis. The majority of respondents (96%) endorsed experiencing at least one instance of perceived or experienced stigma. A framework analysis of N  = 337 participants' responses developed five themes and 19 sub-themes. The first and second themes explored the ‘ Sources ’ and ‘ Drivers and facilitators ’ of T1D-stigma. The third theme encapsulated the ‘ Experiences ’ of T1D-stigma, where participants described ‘unsolicited comments and advice’, ‘discrimination and rejection’ and ‘lack of understanding’. The fourth theme encompassed the ‘ Impact ’ of T1D-stigma, where participants described its social, emotional, and behavioural impact. The final theme explored Stigma management ’ and described ‘dealing with T1D-stigma’, ‘changes over time in self, society and diabetes technology’ and ‘protective factors in T1D-stigma encounters’. This study has provided the first systematic qualitative analysis of T1D-stigma in the UK. In line with other diabetes-related stigma research, T1D-stigma was broad in its manifestations and impact. Participants volunteered information about T1D-stigma management, despite not being explicitly asked about this, highlighting approaches that could inform future interventions.

Clinical significance of a broad autism phenotype (BAP) seems to be increasingly supported by growing reports of high prevalence of subthreshold autism spectrum disorder (sASD) or autistic traits (AT) in various demographic samples, particularly in individuals with psychiatric conditions. We question this increasing extension of the autism spectrum and its potential negative consequences for clinical services, research, cultural attitudes, and resource allocation, as well as alternative explanations of what is currently attributed to sASD and AT. In modern psychiatry the diagnostic threshold is paramount and associated with a significant impairment of functioning, implying that symptom specificity is more relevant than sensitivity. Within a syndrome, symptoms have to be present together, with the parts related to and interconnected with the whole. Single autism symptomatic dimensions have low syndromic specificity and can be observed in many different mental disorders. For instance, communication problems may present in communication disorders, social-cognitive difficulties can be found in schizophrenia, and rigid and/or repetitive behaviors can be found in obsessive compulsive disorder. One alternative interpretation of AT and/or sASD relates to personality traits. For example, within the Big 5 Model, low openness is associated with a dislike of change and a narrow range of interests, low extraversion with social withdrawal and coldness, and low agreeableness with disinterest in others and disregard for their feelings. These risks of overreliance on non-specific aspects of autism are particularly likely to occur with screening checklists, self-assessment, or assessment by a lay interviewer with only limited expertise in clinical assessment.

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.

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.

Background Sharing a dementia diagnosis with others is a prerequisite to accessing important support for social, cognitive, and physical activity. However, due to the stigma associated with dementia, individuals may be hesitant to disclose their diagnosis. Despite the importance of this issue, there is limited research on personal experiences with sharing one’s diagnosis. This study explored how people with young-onset dementia disclose their diagnosis to other people, also known as self-disclosure, and how time affects self-disclosure. Methods We conducted an exploratory qualitative study, using semi-structured interviews with nine people with young-onset dementia living in the United Kingdom (UK). A narrative approach to analysis was applied, focusing on understanding the core narratives, themes, tone, and imagery of each participant’s narratives as well as providing a cross-case analysis to identify patterns across narratives. Results Participants openly disclosed their diagnosis, accepting it as an illness that did not define their identity. Several were met with stigmatizing reactions, which affected their levels of openness, and a lack of understanding, which caused shrinking social networks for some. Peer support groups, advocacy activities, and strategic concealment were used to support self-disclosure. Conclusion This study provides a holistic understanding of people with young-onset dementia’s experiences with self-disclosure and how these evolved. Policies should prioritize the creation of dementia-friendly communities, while recommendations for practice include integrating empowerment interventions and peer support into post-diagnostic support. These efforts will support individuals in their self-disclosure journey, promote social engagement and reduce stigma.