Journal of Intellectual Disability Research最新文献

{"title":"Examining the Relation Between Sleep Problems and Behavioural Challenges in Youth With Down Syndrome","authors":"Amanallah Soltani,&nbsp;Susan Wiley,&nbsp;Pamela Williams-Arya,&nbsp;Emily K. Hoffman,&nbsp;Anna J. Esbensen","doi":"10.1111/jir.13213","DOIUrl":"10.1111/jir.13213","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The connection between sleep problems and behavioural challenges in individuals with Down syndrome (DS) has been a central focus of research across different age groups. However, uncertainty remains regarding this association, particularly when relying solely on daily-based assessments. This study aimed to examine the relationship between sleep problems and behavioural challenges at both overall (macro) and daily (micro) levels among youth with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Sleep disturbances were measured in a sample of 65 youth with DS aged 6–17 years using the Children's Sleep Habits Questionnaire (CSHQ) and actigraph watches assessing sleep efficiency, sleep duration and wake after sleep onset. Behavioural challenges were evaluated through externalising and internalising subscales of the Child Behavior Checklist (CBCL) and of the Scales of Independent Behavior, Revised (SIB-R).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The findings demonstrated that over a period of time, sleep problems are significantly associated with both externalising and internalising behaviours as measured by CSHQ and CBCL, even after accounting for the effects of IQ and SIB-R Broad Independence. No significant correlations were observed on a daily basis over seven consecutive days, as measured by actigraphy and both externalising and internalising indices of SIB-R.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results highlight the complexity of the sleep–behaviour relationship in DS, indicating that while chronic sleep issues impact long-term behaviours, nightly variations do not predict immediate behavioural changes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"310-317"},"PeriodicalIF":2.1,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13213","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391065","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":"Eye Tracking as a Tool for Detecting Alzheimer's Disease in People With Down Syndrome","authors":"Brianna Piro-Gambetti,&nbsp;Sharon Krinsky-McHale,&nbsp;Cynthia Kovacs,&nbsp;Benjamin Handen,&nbsp;Bradley Christian,&nbsp;Charles M. Laymon,&nbsp;Davneet Minhas,&nbsp;Weiquan Luo,&nbsp;Dasoo Milton Yoon,&nbsp;Victoria L. Fleming,&nbsp;Emily Schworer,&nbsp;Heather Kirkorian,&nbsp;Sigan L. Hartley,&nbsp;Alzheimer Biomarkers Consortium-Down Syndrome","doi":"10.1111/jir.13214","DOIUrl":"10.1111/jir.13214","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with Down syndrome (DS) experience an increased risk of Alzheimer's disease (<span>AD</span>). Valid cognitive assessments for adults with DS with severe/profound intellectual disability (ID) are needed. It is unclear whether eye tracking is feasible for detecting <span>AD</span> in DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Fifty-three adults with DS completed a visual paired comparison (VPC) task, a battery of cognitive measures, and underwent PET scanning. Study partners reported on the participant's dementia symptoms. Bivariate correlations assessed associations between eye-tracking metrics and <span>AD</span>-related pathology and symptomatology. Analyses included the full sample (<i>n</i> = 53) and a subgroup with an IQ ≤ 45 (<i>n</i> = 33).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Greater fixation duration during the habituation phase was associated with better cognitive performance on the Modified Cued Recall Test (mCRT) (intrusions: <i>r</i> = −0.39, <i>p</i> = 0.011) and less PET tau (<i>r</i> = −0.47, <i>p</i> = 0.014). Larger saccadic amplitudes during the test phase were associated with younger age (<i>r</i> = −0.45, <i>p</i> &lt; 0.001), better cognitive performance on the mCRT (total: <i>r</i> = 0.31, <i>p</i> = 0.041; intrusions: <i>r</i> = −0.33, <i>p</i> = 0.032) and less PET Aβ (<i>r</i> = −0.40, <i>p</i> = 0.025). Greater preference to fixate on the novel image was associated with fewer dementia symptoms (count: <i>r</i> = −0.44, <i>p</i> = 0.002; duration: <i>r</i> = −0.38, <i>p</i> = 0.009). This pattern of significance remained for the subgroup with lower IQ scores.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The VPC task is a potentially useful method for assessing <span>AD</span>-related cognitive impairments in adults with DS across varying ID levels.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"370-382"},"PeriodicalIF":2.1,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13214","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391020","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":"A Comparison of Commonly Used Prediction Equations for Estimating Resting Metabolic Rate in Adults With Down Syndrome","authors":"Brian C. Helsel,&nbsp;Joseph R. Sherman,&nbsp;Amy E. Bodde,&nbsp;Richard A. Washburn,&nbsp;Lauren T. Ptomey","doi":"10.1111/jir.13215","DOIUrl":"10.1111/jir.13215","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Resting metabolic rate (RMR), the energy required by the body at rest, is the largest part of total daily energy expenditure. Commonly used prediction equations may overestimate RMR in adults with Down syndrome (DS). The purpose of this study was to assess the equivalency of prediction equations for estimating RMR in adults with DS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twenty-five adults with DS (24 ± 5 years of age, 64% female) completed RMR assessments at an academic medical centre in the United States between November 2021 and July 2023. Measured RMR (kilocalories per day) was compared to estimated RMR from eight prediction equations using a null hypothesis significance (i.e., a paired <i>t</i>-test) and equivalence (i.e., a two one-sided test) tests. Bland–Altman plots, Pearson correlations and linear regressions were used to evaluate the bias between the measured and predicted RMR values.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Measured RMR in adults with DS was 1090 ± 136 kcal/day. Prediction equations overestimated RMR by 8 ± 16% (76 ± 165 kcal/day) to 45 ± 16% (488 ± 165 kcal/day) except for the Bernstein fat-free mass equation which underestimated RMR by 0.2 ± 11.5% (8 ± 123 kcal/day) and was statistically equivalent to measured RMR in our sample (<i>p</i> = 0.027).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The Bernstein fat-free mass equation offers better accuracy in adults with DS than other RMR prediction equations, but the equation needs to be evaluated in larger, more diverse samples of adults with DS.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 5","pages":"428-436"},"PeriodicalIF":2.1,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374204","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":"Proprioceptive Training Induced Adaptations of Static Balance Control: An RCT Study in Adults With Intellectual Disability","authors":"Konstantinos Rallis,&nbsp;Elisavet Konstantinidou,&nbsp;Vassilia Hatzitaki,&nbsp;Georgios Mavrommatis,&nbsp;Eleni Fotiadou","doi":"10.1111/jir.13212","DOIUrl":"10.1111/jir.13212","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Adults with intellectual disability (ID) experience injurious falls that may affect their quality of life. The present randomised control trial (RCT) study examined the efficacy of a 10-week proprioceptive training programme, on static balance performance, in adults with mild to moderate ID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Participants were voluntarily recruited from a day care centre and randomly assigned into the intervention (IG; <i>n</i> = 14; 36.4 ± 3.8 years; males/females = 8/6) and the control group (CG; <i>n</i> = 13; 37.6 ± 4.8 years; males/females = 7/6). The IG trained three times per week with the proprioceptive training programme, whereas both groups followed the regular adapted physical activity programme of the day care centre. Static balance was assessed before and after the intervention with three static balance tests [bipedal stance (60″), Tandem Romberg stance (30″) and single leg stance (15″)] performed on a force platform, whereas the Mini-BESTest was also used to assess aspects of static and dynamic balance in the field.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The IG significantly improved (<i>p</i> &lt; 0.05) test scores of the Mini-BESTest and decreased the range and the root mean square of the centre of pressure displacement during the bipedal, Tandem Romberg and single leg stance, in contrast to the CG who showed no improvement.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The specific proprioceptive training programme improved the static balance of adults with ID and this could have a positive, significant impact in their daily life, as it may reduce the incidence of falls and relative injuries.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"298-309"},"PeriodicalIF":2.1,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13212","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374215","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":"Community and Hospital Healthcare Use by Adults With and Without Intellectual and Developmental Disabilities in Ontario, Canada, During the First 2 Years of the COVID-19 Pandemic","authors":"A. Durbin,&nbsp;R. Balogh,&nbsp;E. Lin,&nbsp;L. Palma,&nbsp;L. Plumptre,&nbsp;Y. Lunsky","doi":"10.1111/jir.13209","DOIUrl":"10.1111/jir.13209","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study describes the proportion of Ontario adults with and without intellectual and developmental disabilities (IDD) who used community- and hospital-based healthcare in the first 2 years of the pandemic compared with the year pre–COVID-19.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Linked health administrative databases identified 87 341 adults with IDD and also adults without IDD living in Ontario, Canada. For each cohort, counts and proportions of adults who used different types of healthcare services were reported for the pre–COVID-19 year (16 March 2019 to 14 March 2020) and the first two COVID-19 years (15 March 2020 to 14 March 2021 and 15 March 2021 to 14 March 2022).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Compared with the year prior to COVID-19, the proportion of adults with and without IDD who used health services was lower during the first COVID-19 year, but the likelihood of all types of visits increased during the second year. The likelihood of using homecare and of being hospitalized nearly returned to pre-pandemic levels. Virtual physician visits increased in each COVID-19 year from 5.2% prior to the pandemic to 13.0% in year 1 and 58.7% in year 2. For all years, the proportion of adults who used each service type was higher for those with IDD than without IDD.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>For adults with and without IDD in Ontario, Canada, during the first two COVID-19 years healthcare use decreased for all service types, except for virtual physician visits. In the second year, healthcare use increased but did not reach pre–COVID-19 levels. In all years, adults with IDD were more likely to use services than other adults.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"318-327"},"PeriodicalIF":2.1,"publicationDate":"2025-01-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13209","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143059170","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":"Social Internet Use by People With Intellectual Disabilities: A Systematic Review and Thematic Synthesis of Qualitative Studies","authors":"Johanna L. L. van Alem,&nbsp;Hannah,&nbsp;Noud Frielink,&nbsp;Petri J. C. M. Embregts","doi":"10.1111/jir.13211","DOIUrl":"10.1111/jir.13211","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Introduction&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Although existing research has explored both the benefits and risks associated with social internet use amongst people with intellectual disabilities (ID), a comprehensive understanding of the underlying reasons for this engagement is still lacking. This systematic review synthesizes literature investigating the reasons for social internet use amongst people with ID.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Eight electronic databases (Cinahl, Cochrane, Embase, ERIC, Google Scholar, Medline, PsycINFO and Web of Science) were systematically searched in June 2023 and November 2024 and screened using active machine learning techniques. Studies were considered for inclusion if they qualitatively described the reasons, motivations and personal opinions of people with ID regarding their social internet use in English and were published in peer-reviewed journals. Caregivers' insights were included if individuals could not verbally communicate directly. Only voluntary social internet use was considered; interventions were excluded unless preintervention views on social internet use were reported. Risk of bias was assessed using the Mixed Methods Appraisal Tool (MMAT; Hong et al. 2018). Data were extracted using the SPIDER tool and analysed using thematic synthesis.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;In total, 21 relevant articles were identified. Most studies described social internet use in Western contexts (&lt;i&gt;n&lt;/i&gt; = 19), primarily amongst adults (&lt;i&gt;n&lt;/i&gt; = 16). Four articles specifically addressed social internet use during COVID-19. Only seven studies explicitly reported participants' level of ID, with six focusing on mild-to-moderate ID and one on profound and multiple ID. Four themes emerged: a feeling of fitting in (&lt;i&gt;n&lt;/i&gt; = 12), maintaining connections (&lt;i&gt;n&lt;/i&gt; = 16), making new connections (&lt;i&gt;n&lt;/i&gt; = 14) and enhancing autonomy and empowerment (&lt;i&gt;n&lt;/i&gt; = 10).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Discussion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The findings underscore the importance of social internet use in fostering feelings of inclusion, connectedness and autonomy amongst people with ID. These insights can guide researchers and caregivers in developing tailored support strategies that both maximize the benefits and mitigate the risks of online social engagement for this population. By understanding the specific reasons behind social internet use, caregivers can offer more personalized guidance that aligns with the individual needs and preferences of people with ID. The review also highlights a need for future research t","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"243-264"},"PeriodicalIF":2.1,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13211","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143023829","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":"Unlocking Vision Care Accessibility: Evaluating Caregivers' Willingness to Pay in Specialised Eye Clinics for Family Members With Intellectual Disabilities","authors":"Chiun-Ho Hou,&nbsp;Yueh-Ching Chou,&nbsp;Christy Pu","doi":"10.1111/jir.13210","DOIUrl":"10.1111/jir.13210","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities (IDs) require more vision care but encounter considerable challenges during eye examinations. Specialised clinics established specifically for people with IDs are generally limited. This study aims to evaluate primary family caregivers' willingness to pay (WTP) for specialised ophthalmology services designed for people with IDs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Between 15 August and 5 October 2023, we conducted a face-to-face survey targeting primary family caregivers of people with IDs in two local authorities in Taiwan. We obtained a probability sample through stratified random sampling. A total of 657 family caregivers completed this survey, with a response rate of 82.6%. WTP was evaluated using a contingent valuation method in a hypothetical ophthalmology clinic conceptualised through a qualitative study. Two-part models were estimated.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The WTP for specialised ophthalmology services designed for people with IDs varied from NT$96.9 (US$3.2) to NT$217.7 (US$7.3) for the lowest-income group (<i>p</i> &lt; 0.001) and from NT$513.0 (US$17.1) to NT$648.6 (US$21.6) for the highest-income group (<i>p</i> &lt; 0.001). Factors such as family income, self-reported financial satisfaction and concern for the ocular health of family members with IDs significantly influenced WTP.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Caregivers' WTP is low relative to the minimum operational costs of specialised ophthalmology clinics within the Taiwanese National Health Insurance scheme. This finding highlights the need for public funding to support such clinics and ensure that they can address the vision health disparity observed between people with and without IDs.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"283-297"},"PeriodicalIF":2.1,"publicationDate":"2025-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13210","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142964579","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":"Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID-19 Pandemic in the UK: Longitudinal Study","authors":"Paul A. Thompson,&nbsp;Eleanor Summers,&nbsp;Sue Caton,&nbsp;Nikita Hayden,&nbsp;Stuart Todd,&nbsp;Edward Oloidi,&nbsp;Laurence Taggart,&nbsp;Rosemary Kelly,&nbsp;Jill Bradshaw,&nbsp;Roseann Maguire,&nbsp;Andrew Jahoda,&nbsp;Chris Hatton,&nbsp;Richard P. Hastings,&nbsp;The Coronavirus and People with Learning Disabilities Study Team","doi":"10.1111/jir.13206","DOIUrl":"10.1111/jir.13206","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Longitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Family carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020–2022). Growth models were used to determine the change in family-carer wellbeing (<i>n</i> = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Overall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"265-273"},"PeriodicalIF":2.1,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13206","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882453","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 Depression in Caregivers of Adults With Down Syndrome","authors":"Amy E. Bodde,&nbsp;Brian C. Helsel,&nbsp;Jessica Danon,&nbsp;Joseph Sherman,&nbsp;Anna Rice,&nbsp;Kristine Williams,&nbsp;Bethany Forseth,&nbsp;Joseph E. Donnelly,&nbsp;Lauren T. Ptomey","doi":"10.1111/jir.13208","DOIUrl":"10.1111/jir.13208","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Family caregivers of those with developmental disabilities have higher rates of depression and anxiety compared with caregivers of those without development disability. Few studies have examined factors that contribute to caregiver depression, including the appraisal of caregiving responsibilities and the physical fitness and daily function of the care recipient. The purpose of this study was to identify intrapersonal (caregiver) and interpersonal (care recipient) factors associated with depressive symptoms in caregivers of adults with Down syndrome (DS).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Twenty-four adults with DS participating in a 12-month physical activity trial completed physical fitness and function tests (VO_2peak, hand grip strength, timed up and go, five times sit to stand) and activities of daily living (ADL) surveys at their baseline visit. Caregivers (<i>n</i> = 24) of the adults with DS completed surveys on caregiving distress, quality of life (QoL) and depressive symptoms. We evaluated the associations of these assessments on caregiver depressive symptoms using Mann–Whitney <i>U</i> tests and Spearman correlations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Adults with DS were 23 ± 7.5 years, 58% female; caregivers were 54 ± 10 years, 100% female, 96% family members. Caregiver depressive symptoms were significantly associated with caregiving distress (<i>p</i> = 0.024) and caregiving QoL (<i>r</i> = −0.58, <i>p</i> = 0.003). Hand grip strength of care recipients was inversely correlated with caregiver depressive symptoms (<i>r</i> = −0.45, <i>p</i> = 0.03), but other assessments of physical function and ADL were not associated with caregiver depressive symptoms.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Caregiver depressive symptoms were related to modifiable factors related to the caregiver and care recipient. Intervening to improve caregiving appraisal and functional strength of the care recipient may positively impact caregiver mental health.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"234-242"},"PeriodicalIF":2.1,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882446","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":"Contraceptive and Pregnancy Decision-Making Autonomy and Health Care Experiences Among Women With Intellectual Disabilities","authors":"Kari Dee Vallury,&nbsp;Victoria Tucker,&nbsp;Nicola Sheeran","doi":"10.1111/jir.13207","DOIUrl":"10.1111/jir.13207","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is currently limited research exploring the extent to which women with an intellectual disability experience autonomy over contraception, pregnancy timing and pregnancy outcome decisions. Previous studies have highlighted inequities in sexual and reproductive health outcomes. However, barriers and facilitators of reproductive autonomy for women with an intellectual disability across the reproductive journey, including health care experiences, are poorly described; this is the focus of the current study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Ten women with intellectual disabilities participated in focus groups or individual interviews where they discussed their experiences of accessing sexual and reproductive health services and making reproductive health decisions. Data were analysed using reflexive thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three themes elucidate how a lack of sexual and reproductive health information and violence impacted many participants' ability to control timing of conception and make informed pregnancy outcome decisions. The first theme describes contraceptive literacy as a barrier to reproductive autonomy. Most participants received no contraception or reproductive health education prior to their first pregnancy. While most women were aware of common forms of contraception and pregnancy options, their contraceptive knowledge was incomplete or incorrect. The second theme explores how most participants experienced agency over pregnancy outcome decisions, though informed decision-making was hampered by reproductive coercion and abuse, delayed pregnancy detection and insufficient information about all pregnancy options. The third theme identifies health professionals as pivotal in empowering reproductive agency and facilitating informed decision-making.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Women with intellectual disabilities demonstrate the willingness and the ability to make informed and autonomous reproductive health decisions when appropriately supported with care and information. However, they face reproductive coercion and abuse and are often required to overcome numerous systemic challenges to assert their reproductive rights. Significant efforts are needed to better understand and address barriers to informed reproductive decision-making.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 4","pages":"274-282"},"PeriodicalIF":2.1,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142882403","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}