Johanna L. L. van Alem, Hannah, Noud Frielink, Petri J. C. M. Embregts
{"title":"Social Internet Use by People With Intellectual Disabilities: A Systematic Review and Thematic Synthesis of Qualitative Studies","authors":"Johanna L. L. van Alem, Hannah, Noud Frielink, Petri J. C. M. Embregts","doi":"10.1111/jir.13211","DOIUrl":"10.1111/jir.13211","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>In total, 21 relevant articles were identified. Most studies described social internet use in Western contexts (<i>n</i> = 19), primarily amongst adults (<i>n</i> = 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 (<i>n</i> = 12), maintaining connections (<i>n</i> = 16), making new connections (<i>n</i> = 14) and enhancing autonomy and empowerment (<i>n</i> = 10).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion</h3>\u0000 \u0000 <p>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, Yueh-Ching Chou, 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> < 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> < 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}
Paul A. Thompson, Eleanor Summers, Sue Caton, Nikita Hayden, Stuart Todd, Edward Oloidi, Laurence Taggart, Rosemary Kelly, Jill Bradshaw, Roseann Maguire, Andrew Jahoda, Chris Hatton, Richard P. Hastings, The Coronavirus and People with Learning Disabilities Study Team
{"title":"Wellbeing of Family Carers of Adults With Intellectual Disabilities During the COVID-19 Pandemic in the UK: Longitudinal Study","authors":"Paul A. Thompson, Eleanor Summers, Sue Caton, Nikita Hayden, Stuart Todd, Edward Oloidi, Laurence Taggart, Rosemary Kelly, Jill Bradshaw, Roseann Maguire, Andrew Jahoda, Chris Hatton, Richard P. Hastings, 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}
Amy E. Bodde, Brian C. Helsel, Jessica Danon, Joseph Sherman, Anna Rice, Kristine Williams, Bethany Forseth, Joseph E. Donnelly, Lauren T. Ptomey
{"title":"Factors Associated With Depression in Caregivers of Adults With Down Syndrome","authors":"Amy E. Bodde, Brian C. Helsel, Jessica Danon, Joseph Sherman, Anna Rice, Kristine Williams, Bethany Forseth, Joseph E. Donnelly, 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<sub>2peak</sub>, 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, Victoria Tucker, 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}
{"title":"Evaluating the Clinical Applicability of Multifrequency Bioelectrical Impedance Analysis for Nutritional Status Prediction in Hospitalized Persons With Severe Motor and Intellectual Disabilities","authors":"Nozomu Yano, Akihiko Ohwatashi, Daishi Iwashita","doi":"10.1111/jir.13203","DOIUrl":"10.1111/jir.13203","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Persons with severe motor and intellectual disabilities (SMID) have difficulty using general nutritional assessments in the elderly and other populations because of their physical characteristics. The purpose of this study was to investigate the clinical utility of body composition, which has been suggested to be related to biochemical tests in persons with SMID.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We calculated cutoff values of body composition predicting malnutrition and compared the usage of peripheral parenteral nutrition for the two groups divided by each body composition cutoff value. We also compared body composition at the baseline between nonsurvivors and survivors.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Only group comparisons based on skeletal muscle ratio and extracellular water to total body water (ECW/TBW) cutoffs showed significant differences in the usage of peripheral parenteral nutrition. Nonsurvivors had significantly higher ECW/TBW than survivors at the baseline.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>In persons with SMID, skeletal muscle ratio and ECW/TBW measured using multifrequency bioelectrical impedance were associated with biochemical indices and ill health. Furthermore, ECW/TBW was also associated with mortality, suggesting that ECW/TBW is a significant measure for nutritional assessment in clinical practice.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"204-213"},"PeriodicalIF":2.1,"publicationDate":"2024-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142794818","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}
Ana Karen Fernández, Andrés Aparicio, Marcela Tenorio
{"title":"Comparative Analysis of Early Caregiver–Child Interaction Patterns in Infants and Toddlers: Evaluating Down Syndrome vs. Typical Development","authors":"Ana Karen Fernández, Andrés Aparicio, Marcela Tenorio","doi":"10.1111/jir.13201","DOIUrl":"10.1111/jir.13201","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The dynamic, reciprocal, and bidirectional relationships in encounters between infants and their caregivers are called early interactions. Evidence shows that these interactions influence cognitive, emotional, and social development beyond the early years. While some studies have examined these interactions in dyads with infants with Down syndrome, they have mostly focused on parents in small samples. This study explores these interactions by considering parental, infant, and interaction variables.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A total of 128 dyads participated, with 64 infants with Down syndrome and 64 typically developing infants, matched one-by-one by developmental age. During home visits, socio-demographic and developmental information was collected, development and dyadic interactions were assessed using standardised instruments. Descriptive analyses, MANOVAs, and ANOVAs were conducted comparing the group of dyads that included infants and toddler with Down syndrome and those with typical development. Infant and toddler gender showed significant differences and was included as a relevant factor in the analyses.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Key findings include lower scores in parental sensitivity and non-directiveness in dyads with children with Down syndrome. Children with Down syndrome also showed lower scores in attention to the caregiver. Interactions with children with Down syndrome exhibited less mutuality and engagement. Significant gender-based interactions were found, showing that parents are more sensitive and less directive with girls with Down syndrome, who also show greater expression of negative affect and better attention to the caregiver.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study suggests different qualities in early interactions when a child with Down syndrome is involved. These interactions are characterised by lower sensitivity and greater directiveness, possibly in response to the lower attention towards the caregiver observed in these children. This results in less mutual interaction. The findings' alignment with previous research and implications for clinical work are discussed. Given the observed effect of the child's gender, future research should further explore this aspect.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"193-203"},"PeriodicalIF":2.1,"publicationDate":"2024-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142780305","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":"Digit-in-Noise Test as a Hearing Screening Test for Individuals With Intellectual Disability","authors":"Noa Shmerler, Leah Fostick, Ronit Saban-Bezalel","doi":"10.1111/jir.13205","DOIUrl":"10.1111/jir.13205","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Diagnosis of intellectual disability (ID) may overshadow, or co-occur with, hearing impairment, but screening is frequently inaccessible due to various factors that prevent successful test execution. There is a pressing need for easily, locally administered hearing tests. This study aimed to assess the efficacy of the digit-in-noise (DIN) test, as well as three variations of it, as a hearing screening for individuals with mild to moderate ID. Additionally, we explored correlations between participant characteristics and cognitive-linguistic abilities, with DIN test performance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Forty participants with ID aged 21–40 were recruited from two supported employment centres, 31 of whom met full inclusion criteria. Controls were 20 typically developed (TD) participants, aged 21–40. The original DIN test (DIN(3)) was administered, and those unable to recall the three digits were administered a version with two digits (DIN(2)). Participants unable to successfully complete DIN(3) or DIN(2) were administered versions with added visual and verbal performance feedback.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>A significant difference in speech receptive threshold in noise (SRTn) between DIN(2) and DIN(3) was only present for the ID group. A moderate negative relationship between DIN(2) SRTn and vocabulary and a positive relationship with age was found for the ID group; no correlation was found with digit span or matrices. The DIN(2) SRTn was correlated with the average hearing level of pure tones measured by audiometry.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings highlight the DIN(2) as the most effective version, as its signal-to-noise ratio (SRTn) threshold was closest to the typically developed (TD) control group. This study is the first step towards developing a hearing screening test for individuals with ID who are at elevated risk of impairment and who have insufficient evaluation access. Our findings suggest that adults with mild to moderate ID can sufficiently perform the adapted DIN(2) as a hearing screening test.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"224-233"},"PeriodicalIF":2.1,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142769524","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}
Tommaso Accinni, Marianna Frascarelli, Pierluigi Cordellieri, Georgios D. Kotzalidis, Martina Fanella, Carlo Di Bonaventura, Carolina Putotto, Bruno Marino, Paola Bucci, Luigi Giuliani, Annalisa Maraone, Massimo Pasquini, Fabio Di Fabio, Antonino Buzzanca, the Italian Network for Research on Psychoses
{"title":"Real-Life Functioning in 22q11.2 Deletion Syndrome in Relation to Neurocognitive Abilities and Psychotic Symptoms: A Comparison With Idiopathic Schizophrenia","authors":"Tommaso Accinni, Marianna Frascarelli, Pierluigi Cordellieri, Georgios D. Kotzalidis, Martina Fanella, Carlo Di Bonaventura, Carolina Putotto, Bruno Marino, Paola Bucci, Luigi Giuliani, Annalisa Maraone, Massimo Pasquini, Fabio Di Fabio, Antonino Buzzanca, the Italian Network for Research on Psychoses","doi":"10.1111/jir.13200","DOIUrl":"10.1111/jir.13200","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The 22q11.2 deletion syndrome (22q11.2DS) entails intellectual disabilities and higher risk of psychotic disorders. Neurocognitive deficits predict real-life functioning of schizophrenic patients. We investigated real-life functioning in 22q11.2DS, aiming at defining how neurocognitive profile and psychopathological variables impact on psychotic patients' social functioning.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We recruited 63 patients with schizophrenia (SCZ, <i>N</i> = 63), 44 with 22q11.2DS (DEL, <i>N</i> = 44) and 19 with 22q11.2DS and psychosis (DEL–SCZ, <i>N</i> = 19), all matched for age, sex and neurocognitive profile; we administered the Positive and Negative Syndrome Scale (PANSS), the Brief Negative Symptom Scale (BNSS), the Specific Levels of Functioning (SLoF) scale and the Measurement and Treatment Research to Improve Cognition in Schizophrenia Consensus Cognitive Battery (MCCB). We implemented descriptive analyses, MANCOVA and linear regression statistics.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The DEL–SCZ and the SCZ groups showed similar levels in <i>Interpersonal Relationships</i> (<i>p</i> = 0.093) and <i>Social Acceptability</i> subscales (<i>p</i> = 0.283). The DEL group scored higher on the <i>Interpersonal Relationships</i> subscale compared with the SCZ group (<i>p</i> = 0.001). The groups scored similarly on the other SLoF subscales. Both BNSS total score (beta = −0.343; <i>p</i> = 0.004) and BNSS asociality (beta = −0.487; <i>p</i> = 0.038) significantly predicted the <i>Interpersonal Relationships</i> variable in the groups with psychosis (SCZ and DEL–SCZ).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion and Conclusions</h3>\u0000 \u0000 <p>Individuals with 22q11.2DS display a similar real-life functioning to patients with chronic schizophrenia. <i>Social functioning</i> impairments are typical of psychosis regardless of the genetic condition and highly predicted by negative symptoms like asociality. The 22q11.2DS represents a reliable biological model to study vulnerability to psychosis and its consequences on patients' real-life and social functioning.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"177-192"},"PeriodicalIF":2.1,"publicationDate":"2024-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jir.13200","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142755122","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}
Karen Y. Sánchez-Luquez, Simone de Menezes Karam, Aluisio J. D. Barros, Andrea Gonzalez, Joseph Murray, Isabel O. de Oliveira, Alicia Matijasevich, Iná S. Santos, Luciana Tovo-Rodrigues
{"title":"Association Between Intellectual Disability and Hair Cortisol Concentration in Adolescents in a Brazilian Population-Based Birth Cohort","authors":"Karen Y. Sánchez-Luquez, Simone de Menezes Karam, Aluisio J. D. Barros, Andrea Gonzalez, Joseph Murray, Isabel O. de Oliveira, Alicia Matijasevich, Iná S. Santos, Luciana Tovo-Rodrigues","doi":"10.1111/jir.13204","DOIUrl":"10.1111/jir.13204","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>Children with intellectual disability (ID) usually exhibit neuroendocrine functioning impairment, such as alterations in the hypothalamic–pituitary–adrenal (HPA) neuroendocrine axis, which can result in glucocorticoid cortisol release alterations. Indeed, many studies showed a positive association between ID and cortisol concentration. However, evidence is lacking on the relationship between child neurodevelopment and cortisol levels during adolescence in population-based studies. We aimed to test the association between ID and hair cortisol concentration (HCC) during adolescence in a prospective population-based cohort.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Data from 1770 individuals in the 2004 Pelotas Birth Cohort were used. ID was diagnosed at age 6 through clinical examination. Hair cortisol was measured at age 15. Association was assessed using linear regression models adjusted for sex, socio-economic factors, hair-related variables and corticosteroid use.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Higher HCC were observed in individuals with ID (<i>β</i>: 1.120; 95% CI: 1.012, 1.241) in the analysis adjusted for sex, hair-related variables and corticosteroid use. Compared to the other aetiological groups, this was more evident in idiopathic ID. But this did not remain significant when demographics/socio-economic variables were controlled for.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Children with ID, particularly those with idiopathic ID, might exhibit dysfunction in the HPA axis or experience heightened stress levels during adolescence.</p>\u0000 </section>\u0000 </div>","PeriodicalId":16163,"journal":{"name":"Journal of Intellectual Disability Research","volume":"69 3","pages":"214-223"},"PeriodicalIF":2.1,"publicationDate":"2024-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142729671","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}