Journal of Intellectual Disability Research最新文献

{"title":"Psychometric Properties of the Nine-Item Personal Health Questionnaire (PHQ-9) Seven-Item Generalised Anxiety Disorder Scale (GAD-7), and the Work and Social Adjustment Scale (WSAS) With People With Intellectual Disabilities","authors":"Dave Dagnan,&nbsp;Rob Saunders,&nbsp;Joshua Stott,&nbsp;Richard Thwaites,&nbsp;Chris Hatton","doi":"10.1111/jir.13231","DOIUrl":"10.1111/jir.13231","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The nine-item Physical Health Questionnaire (PHQ-9), the seven-item Generalised Anxiety Disorder scale (GAD-7) and the Work and Social Adjustment Scale (WSAS) are, respectively, self-report measures of depression, generalised anxiety, and the impact of mental health on the person's personal functioning that are widely used in mainstream mental health services in England. The psychometric properties of these scales when used with people with intellectual disabilities have not been established.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Item level data for the PHQ-9 (<i>n</i> = 128), GAD-7 (<i>n</i> = 124) and WSAS (<i>n</i> = 133) for people with intellectual disabilities in an English NHS Talking Therapies for anxiety and depression (NHSTT) service in the north of England were analysed using internal reliability statistics and confirmatory factor analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In this study, the full PHQ-9, GAD-7 and WSAS have Cronbach's <i>α</i> of 0.81, 0.84 and 0.81, respectively, and have acceptable ranges of corrected item-total correlations. The two-factor structures for the PHQ-9 and the GAD-7 were a better fit than single-factor structures, although the single-factor fit and the correlation between the two factors within each scale suggest that their use as a single scale is justified. The single-factor structure for the WSAS was a good fit.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>In this study, the widely used PHQ-9, GAD-7 and WSAS demonstrate internal consistency values and factor analysis structure similar to those for individuals without intellectual disabilities. The data support the use of these measures for people with intellectual disabilities attending routine primary care mental health services.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"502-509"},"PeriodicalIF":2.1,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13231","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143648794","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Views and Experiences of Dementia in People With Intellectual Disabilities: A Systematic Review of Qualitative Research.","authors":"Joanna Carter, Aimee Spector, Afia Ali, Amelia McFeeters, Sarah Butt, Georgina Charlesworth","doi":"10.1111/jir.13227","DOIUrl":"https://doi.org/10.1111/jir.13227","url":null,"abstract":"<p><strong>Background: </strong>It is important to hear the perspectives of people with intellectual disabilities on dementia. This review aimed to explore views and experiences of dementia from the perspective of people with intellectual disabilities and methodologies enabling people with intellectual disabilities and dementia to participate in qualitative research.</p><p><strong>Methods: </strong>Studies were identified in database searches, along with reference and citation searches. Qualitative data were reviewed using thematic synthesis and risk of bias assessed using the Critical Appraisal Skills Programme (2018). Methodologies used to include participants with intellectual disabilities and dementia were reviewed.</p><p><strong>Results: </strong>Findings from 11 studies, with a total of 47 participants, highlighted loss of ability, relationships and connection associated with dementia, counteracted by support from others, and maintenance of a sense of self through choice, relational connection and competence. A range of methodologies were identified to enable participants with intellectual disabilities and dementia to participate in research.</p><p><strong>Conclusions: </strong>This review highlights emerging, albeit demographically limited, qualitative research in this field. It suggests ways to build on this including methodologies to facilitate inclusion of people with intellectual disabilities and dementia in further research.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143639448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘Mind the Gap’—A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability","authors":"Mirthe J. Klein Haneveld,&nbsp;Klea Vyshka,&nbsp;Charlotte M. W. Gaasterland,&nbsp;Tomasz Grybek,&nbsp;Katarzyna Świeczkowska,&nbsp;ERN-ITHACA Transition of Care guideline consortium,&nbsp;AnneLoes Van Staa,&nbsp;Agnies M. Van Eeghen","doi":"10.1111/jir.13229","DOIUrl":"10.1111/jir.13229","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>For young people with rare conditions associated with intellectual disability, the transfer from paediatric to adult healthcare providers is often complicated. European Reference Network ERN-ITHACA (Intellectual disability, TeleHealth, Autism and Congenital Anomalies) on Rare Congenital Malformations and Rare Intellectual Disability aims to develop a clinical practice guideline to improve this transition. The aim of this study was to identify which aspects of the transition to adult care matter most and to describe the current care gap as experienced by European caregivers to inform the guideline scope.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>An international web-based survey was conducted by ERN-ITHACA in January–February 2023. Priorities for a good transition process and current care gaps in Europe were identified using the ‘Mind the Gap’ scale. The surveys were created in plain and easy-to-read language and available in nine European languages.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One hundred fifty-seven caregivers from 15 European countries completed the survey, representing over 40 conditions, including the Phelan–McDermid, Rubinstein–Taybi, 22q11.2 deletion and Kleefstra syndromes. Care gaps were identified, particularly related to process issues such as the preparation for and adaptation to adult healthcare, supporting independence and planning for the future. Items considered essential for optimal healthcare were related to individualised approaches, information provision and coordination of care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Coordinated, specialised, individualised and multidisciplinary care is required to support youth with rare conditions and intellectual disability in the transitional age. Supporting young people's independence, orchestrating multidisciplinary care and ensuring effective communication are particularly challenging in the transition to adult healthcare for this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"480-488"},"PeriodicalIF":2.1,"publicationDate":"2025-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13229","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143624774","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Factors Associated With Alzheimer's Dementia Diagnosis and Survival in Down Syndrome","authors":"Olivia Pounds,&nbsp;Kate Theodore,&nbsp;Karen Dodd","doi":"10.1111/jir.13230","DOIUrl":"10.1111/jir.13230","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with Down syndrome (DS) have an increased risk for Alzheimer's disease (<span>AD</span>). Identifying factors associated with dementia onset and subsequent survival will support in understanding the disease profile, improving timely diagnosis, management, and care planning.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Variables associated with age at dementia onset and survival times were assessed in 279 adults with DS who accessed a community learning disability service. After outliers were removed, regression and hazard regression models were used for disease onset (<i>n</i> = 265) and survival times (<i>n</i> = 180), respectively.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Earlier age at first assessment and living with family predicted earlier age at diagnosis, which led to longer survival, post-diagnosis. Epilepsy and living in a long-stay hospital were associated with earlier mortality.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Implications for clinical practice include reflections on the importance of early baseline assessments and caregiver awareness. Suggestions for future research include investigating intersectionality of social factors with genetics to better understand <span>AD</span> trajectories.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"489-501"},"PeriodicalIF":2.1,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13230","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143615593","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Using National Survey Data to Estimate Healthcare Communication Disparities for Adults With Intellectual and Developmental Disabilities.","authors":"Jamie Koenig, Lauren Bishop","doi":"10.1111/jir.13224","DOIUrl":"https://doi.org/10.1111/jir.13224","url":null,"abstract":"<p><strong>Background: </strong>Previous studies have identified considerable health outcome disparities for adults with intellectual and developmental disabilities (IDD) as well as poor or ineffective communication between adults with IDD and their medical providers.</p><p><strong>Methods: </strong>Using National Health Interview Survey (NHIS) data, this paper uses logistic regression to estimate disparities in healthcare communication and satisfaction between adults with IDD, adults with non-IDD disabilities, and adults with no reported disabilities, controlling for sociodemographic characteristics. Communication quality is measured with survey questions about whether medical providers are respectful, ask for patients' opinions, and offer understandable medical information.</p><p><strong>Results: </strong>We identified sizeable disparities in communication quality and satisfaction between adults with non-IDD disabilities and no reported disabilities. Adults with IDD experienced significantly lower odds of receiving understandable information compared to adults with no reported disabilities. There are suggestive evidence that adults with IDD have lower odds of being satisfied with healthcare, having their opinion asked, and feeling respected.</p><p><strong>Conclusions: </strong>There are healthcare communication and satisfaction disparities between adults with and without IDD or other disabilities. Future research should characterise the size and exact nature of these disparities in communication quality and satisfaction for those with IDD. These findings can inform interventions and trainings to improve communication quality and satisfaction for those with all forms of disability.</p>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":" ","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143605184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding Music Participation for Adults With Down Syndrome","authors":"Jennie L. Dorris,&nbsp;Juleen Rodakowski,&nbsp;Angela Caldwell","doi":"10.1111/jir.13226","DOIUrl":"10.1111/jir.13226","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with Down syndrome are living longer and have high risk of experiencing Alzheimer's disease as they age. With few services available, music is a promising modality that has been shown to support cognitive functioning. This study reported on the frequency of music participation for adults with Down syndrome and explored associations of age, race and level of intellectual disability with music participation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The research team administered a survey to care partners of adults with Down syndrome (<i>n</i> = 27) that measured music participation in terms of ‘listening’ and ‘playing’ using the Guernsey Community Participation and Leisure Assessment.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>44.4% of care partners reported providing over 50 h of care a week. 92.6% of adults with Down syndrome listened to music, and 33.3% played music either weekly or daily. 74.1% of care partners reported that adults with Down syndrome could listen to music unaccompanied, and 48.2% of care partners reported that adults with Down syndrome could play music unaccompanied. A statistically significant association was found between race and playing music.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Knowing that multiracial adults with Down syndrome had a higher frequency in playing music, a potent future research direction is better understanding the musical needs and preferences of these diverse adults. Broadly, those developing services and supports could consider utilizing music as a meaningful activity that does not add care partner burden.</p>\u0000 \u0000 <p><b>Trial Registration:</b> University of Pittsburgh's Institutional Review Board: 22080146</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"527-532"},"PeriodicalIF":2.1,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13226","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143597020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mortality in Tuberous Sclerosis Complex in the United Kingdom, 2016–2022","authors":"Callum Richard Thomas Kidson,&nbsp;Ne-Ron Loh,&nbsp;Yasir Ahmed Syed","doi":"10.1111/jir.13225","DOIUrl":"10.1111/jir.13225","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Tuberous sclerosis complex (TSC) is a genetic condition caused by mutations in either <i>TSC1</i> or <i>TSC2</i> genes, affecting around two million people globally. This study aims to examine causes of death in TSC and explore factors contributing to mortality in people with TSC in the United Kingdom in recent years following updated management and surveillance guidelines for the condition.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Comprehensive analysis of the available medical records of the people seen at the largest lifespan TSC clinic in the United Kingdom who passed away between 2016 and 2022 was conducted. Disease-related factors were identified, and the cause of death was determined. Where mortality cause was unobtainable, information was sought from the person's general practitioner, or their death certificate was obtained from the General Registry Office. Subsequently, the cohort was divided into subgroups to investigate potential risk factors for premature mortality. Our results were compared to that of previous TSC mortality studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The study consisted of 19 deaths. Nine deaths were unequivocally attributed to TSC. These fatalities were due to epilepsy (<i>n</i> = 3/19), aspiration pneumonia (<i>n</i> = 3/19), SEGA (<i>n</i> = 1/19), hepatic AML (<i>n</i> = 1/19) and pNET (<i>n</i> = 1/19). Other causes included malignant cancer (<i>n</i> = 6/19), sepsis (<i>n</i> = 2/19), COVID-19 (<i>n</i> = 1/19) and stroke (<i>n</i> = 1/19). Renal failure was a secondary cause in two deaths.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>Compared to limited previous mortality studies, this cohort appears to be less affected by SUDEP. This group is also more greatly affected by cancer and presents a potential link between early mortality and renal AML size. Moreover, a clearer role of intellectual disability in mortality of people with TSC may have been identified. Most causes of mortality in this TSC cohort are potentially prevented with suitable interventions earlier.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 6","pages":"457-464"},"PeriodicalIF":2.1,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13225","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143596951","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Access to Oral Healthcare in Individuals With Rett Syndrome: A Qualitative Study of Parent Perspectives","authors":"Yvonne Yee Lok Lai,&nbsp;Sobia Zafar,&nbsp;Helen Margaret Leonard,&nbsp;Laurence James Walsh,&nbsp;Jenny Anne Downs","doi":"10.1111/jir.13222","DOIUrl":"10.1111/jir.13222","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Intellectual and developmental disabilities (IDD) are varied in their nature and presentation. Barriers to oral healthcare are reported in studies of general populations with IDD but these may not reflect the barriers experienced by individuals with rare disorders such as Rett syndrome (RTT). There are also few peer-reviewed studies in the Australian context exploring barriers to dental care access for patients living with a disability. This qualitative study explored caregivers' perceptions and experiences regarding oral health and access to dental care for those with RTT in Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Parents of 31 individuals with a confirmed <i>MECP2</i> mutation were sampled purposively from the <i>Australian Rett Syndrome Database</i>. Interview questions were based on earlier studies used in other disability populations and queried identification and management of dental pain and influence of other comorbidities in their child's oral care. Interviews were audio-recorded, transcribed and analysed using NVivo (Version 12 Plus). Directed content analysis was used to code data to a framework constructed from a literature review of factors affecting access to professional oral healthcare systems and factors affecting access to optimal at-home oral care in disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The most frequently cited barriers to professional dental care were dentist-related, while caregiver related financial barriers were cited by a minority of families. Dentist-related financial barriers were not present in these data. Most factors affecting access to optimal at-home oral care coded to the existing framework, with further enablers identified under training for the caregiver or parent.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings of this study provide a point of reference to understand factors affecting provision of at-home dental care and professional services to enable optimal oral health in RTT. Future research could explore the provision of targeted oral health information on RTT to carers and clinicians.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"403-416"},"PeriodicalIF":2.1,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143542287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sexual Health Literacy Among Adults With Intellectual Disabilities: A Scoping Review","authors":"Margaret McGrath,&nbsp;Lok Yan Cheryl Chong,&nbsp;Susan Collings,&nbsp;Roxanna Pebdani","doi":"10.1111/jir.13217","DOIUrl":"10.1111/jir.13217","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Although sexual health literacy is recognised as critical to sexual health and well-being, little is known about how people with intellectual disabilities acquire or use sexual health literacy skills. This scoping review examined research to explore what is known about sexual health literacy among adults with intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We used Arksey and O′Malley's scoping framework to guide our review. We searched five electronic databases and reference lists of full-text articles. Inclusion criteria included (i) original research in peer reviewed journals; (ii) published in English; (iii) addressed perspectives or experiences of people with intellectual disabilities regarding sexual health literacy or related topics. Findings were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (PRISMA-Scr). All text labelled ‘results’, ‘findings’ or ‘discussion’ was subjected to interpretive content analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The search strategy identified 5447 records, 102 met all eligibility criteria and were included for review. A conceptual framework to understand factors shaping sexual health literacy was developed. In this framework, sexual health literacy is underpinned by two fundamental pillars: sexual knowledge and sexual autonomy. The availability of sexual knowledge and sexual autonomy is threatened by several factors in the social environment: presumed sexual vulnerability and sexual incompetence, and expectations of heteronormativity and asexuality. Combined these factors reduce opportunities for acquisition of sexual knowledge and enactment of sexual autonomy and ultimately appear to limit sexual literacy among people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Sexual health literacy is critical for people with intellectual disabilities to enjoy full sexual citizenship. Despite this limited attention has been paid to supporting people with intellectual disabilities to acquire and use sexual health literacy skills. Comprehensive education programs are needed to address this gap and ensure the rights of people with intellectual disabilities to engage in safe, pleasurable sexual experiences and enjoy good sexual health are upheld.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"345-369"},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13217","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143458276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"‘Smiling and Talking Slowly’: A Qualitative Study on the Ideal Ophthalmologist From the Perspective of Adults With Intellectual Disabilities","authors":"Yueh-Ching Chou,&nbsp;Bo-Wei Chen,&nbsp;Christy Pu,&nbsp;Chiun-Ho Hou","doi":"10.1111/jir.13220","DOIUrl":"10.1111/jir.13220","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Health care accessibility and inequality for people with intellectual disabilities have long been subjects of discussion. Issues related to eye examinations and visits to ophthalmologists are particularly challenging for these people. However, disability studies and healthcare from the perspectives of people with intellectual disabilities remain scarce. The current study aims to explore the experiences and expectations of adults with intellectual disabilities during ophthalmologist visits, with a focus on their subjective viewpoints.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative study was conducted between 2021 and 2022 that involved semistructured interviews with 22 adults with intellectual disabilities who were users of day programs or residential services in Taiwan. The interviews, supplemented with pictures, were conducted using purposive sampling. Thematic analysis was used to analyse the data.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Four themes emerged regarding their experiences with ophthalmologists: ‘Because my eyes itched, I went to the doctor;’ the need for clear and slow explanations during vision screening; anxiety and discomfort during equipment use and focused examination; and ‘The doctor is good. She smiles and is gentle with me.’ In addition, two themes related to their expectations were identified:equipment use and pre-examination instructions and ideal characteristics of ophthalmologists: smiling and talking slowly.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>For people with intellectual disabilities, an ideal ophthalmologist is patient-centred and provides individualised care—‘<i>Smiling and Talking Slowly’</i>; otherwise, fear of visiting eye doctors worsens their health inequalities. Integrating these considerations into ophthalmology training and practice is essential to enhance the quality of care for and the well-being and dignity of people with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"393-402"},"PeriodicalIF":2.1,"publicationDate":"2025-02-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13220","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143458279","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}