Iraia Bidaurrazaga-Letona, José Carlos Diz, Jon Torres-Unda, Izaro Esain, Xabier Monasterio, Biotz Zulueta, Carlos Ayán
{"title":"Short Physical Performance Battery reliability and validity in adults with mild to moderate intellectual disability.","authors":"Iraia Bidaurrazaga-Letona, José Carlos Diz, Jon Torres-Unda, Izaro Esain, Xabier Monasterio, Biotz Zulueta, Carlos Ayán","doi":"10.3109/13668250.2023.2166198","DOIUrl":"10.3109/13668250.2023.2166198","url":null,"abstract":"<p><strong>Background: </strong>People with intellectual disability have poor balance skills and greater fall risk. The Short Physical Performance Battery (SPPB) provides comprehensive information on functional status and can predict fall risk. However, the reliability and validity of the SPPB have not been evaluated in people with intellectual disability.</p><p><strong>Methods: </strong>Seventy-eight adults with intellectual disability were assessed using the SPPB twice. Reliability was analysed with intraclass correlation coefficient and validity was assessed against the Timed Up & Go (TUG) test and the stabilometric test using Spearman's rho.</p><p><strong>Results: </strong>Reliability was moderate to high in all SPPB components except for the semi-tandem and full tandem positions. The SPPB summary score indicated moderate test-retest reliability and showed mostly significant moderate associations with the TUG and poor agreement with the stabilometric test.</p><p><strong>Conclusions: </strong>The SPPB summary score indicated high internal consistency, moderate reliability, and moderate validity when applied to adults with intellectual disability.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"238-246"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49294531","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nicole Megan Edwards, Rebecca Lieberman-Betz, Sarah Wiegand
{"title":"Parents with intellectual disability and mental health conditions: Early intervention providers' perceptions.","authors":"Nicole Megan Edwards, Rebecca Lieberman-Betz, Sarah Wiegand","doi":"10.3109/13668250.2022.2112530","DOIUrl":"10.3109/13668250.2022.2112530","url":null,"abstract":"<p><strong>Background: </strong>It is highly recommended that professionals promote caregivers' capacity-building to use intervention strategies to support children with developmental delays or disabilities in natural learning environments, particularly in the earliest years of life. There is a gap, however, in understanding the extent to which these professionals may feel supported in tailoring outreach to support parents with Intellectual Disability and/or mental health conditions (MHCs).</p><p><strong>Methods: </strong>We surveyed providers (n = 55) who work with families of infants and toddlers in Early Intervention programs across the United States.</p><p><strong>Results: </strong>Most had at least one family with intellectual disability (87%) or a MHC (92%). At least half felt parents with intellectual disability or MHCs warranted more time/resources (64% or 50%, respectively) and half were \"extremely interested\" in trainings to support parents with intellectual disability (48%) or MHCs (56%).</p><p><strong>Conclusions: </strong>Findings and implications are discussed.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"225-237"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45061246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sam Quinn, Sarah J Rhynas, Susan Gowland, Lois Cameron, Nicola Braid, Aisha Holloway, Siobhan O'Connor
{"title":"Evaluating a visual communications tool to explore risk and safety with nurses and patients within an intellectual disability forensic service: A pilot study.","authors":"Sam Quinn, Sarah J Rhynas, Susan Gowland, Lois Cameron, Nicola Braid, Aisha Holloway, Siobhan O'Connor","doi":"10.3109/13668250.2022.2106697","DOIUrl":"10.3109/13668250.2022.2106697","url":null,"abstract":"<p><strong>Background: </strong>Issues of risk and safety can be challenging to discuss with forensic patients with an intellectual disability. Talking Mats is a visual communication tool that facilitates therapeutic conversations.</p><p><strong>Method: </strong>A pilot study, adopting an ethnographic approach, was used to evaluate Talking Mats. Interviews and video observations were conducted with nurses and forensic patients with an intellectual disability from two forensic wards in Scotland.</p><p><strong>Results: </strong>Exploratory evidence suggests that Talking Mats offers a non-biased platform to discuss potentially emotive issues around risk, safety, and wellbeing. Pre-existing notions of Talking Mats, staff availability, and the context of COVID-19 acted as barriers to adopting the visual communications tool.</p><p><strong>Conclusion: </strong>There is value in further research regarding communication tools to facilitate input on care planning and risk management for patients with an intellectual disability.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"284-299"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46593881","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Giving guidance in the online lives of young people with intellectual disabilities: Challenges and guiding approaches in the daily practice of Dutch care staff.","authors":"Rogier de Groot, Hendrien L Kaal, Wouter Ph Stol","doi":"10.3109/13668250.2022.2149066","DOIUrl":"10.3109/13668250.2022.2149066","url":null,"abstract":"<p><strong>Background: </strong>This study reports the findings from a Dutch study, exploring care workers' challenges and approaches in guiding young people with intellectual disabilities in their online lives.</p><p><strong>Method: </strong>Using an inductive research design 33 semi-structured interviews were conducted with care workers.</p><p><strong>Results: </strong>Care workers report challenges that revolve around three themes: (1) the perceived intangibility of the online lives of clients and (2) Risk perception: feeling stuck between control and freedom. (3) Differences in guiding approach between care workers. Based on these results a conceptual model is presented that aims to show the connection between these challenges and guiding approaches.</p><p><strong>Conclusion: </strong>Perceptional processes may influence care workers' guiding approaches. This raises important questions about the implications of these guiding approaches on the level of support clients with intellectual disabilities receive and the effectuation of their rights and liberties under the 2006 United Nations (UN) Convention on the Rights of Persons with Disabilities.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"260-270"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42906570","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The adaptation experience of families with children with developmental disabilities in Mainland China.","authors":"Hui Su, Hailing Gong, Gwynnyth Llewellyn, Jinxia Liu, Yali Yi, Yaqian Gao","doi":"10.3109/13668250.2022.2098937","DOIUrl":"10.3109/13668250.2022.2098937","url":null,"abstract":"<p><strong>Background: </strong>Families of children with developmental disabilities face extraordinary changes in their life circumstances and needs that require adaptations to create sustainable and meaningful daily routines. The present study explored the adaptation of Chinese families of children with developmental disabilities from an ecocultural theoretical perspective.</p><p><strong>Method: </strong>A total of 34 families of children with developmental disabilities were interviewed using the adapted Family Life Interview, and the data were analysed thematically.</p><p><strong>Results: </strong>The Chinese families put the needs of their child with developmental disabilities as their highest priority, sought to maintain family harmony, faced an unpredictable future, and experienced limited services to support their endeavours.</p><p><strong>Conclusion: </strong>The findings stress the importance of having a deep understanding of the cultural and social contexts that impact the lives of families of children with developmental disabilities prior to developing family-centred interventions to assist families in their changed life circumstances.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"271-283"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46798771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The impact of inclusion: Improving medical student confidence in caring for adults with intellectual disabilities through an interactive, narrative-based session.","authors":"Lauren Clarke, Holly K Tabor","doi":"10.3109/13668250.2023.2198345","DOIUrl":"10.3109/13668250.2023.2198345","url":null,"abstract":"<p><strong>Background: </strong>There is often very little training during medical school focused on how to provide care to individuals with intellectual disabilities. This curriculum gap results in students reporting low levels of confidence in their ability to care for this population.</p><p><strong>Methods: </strong>Medical students attended an interactive, narrative-based session on caring for individuals with intellectual disabilities. Student confidence was assessed through pre- and post-session surveys.</p><p><strong>Results: </strong>Students reported low levels of confidence in their overall ability to provide care to people with intellectual disabilities, but this level significantly increased following the course session. Student confidence also increased significantly across all learning objectives.</p><p><strong>Conclusions: </strong>The success of this session provides additional support for the importance of including individuals with intellectual disabilities within the medical school curriculum; however, we must continue to advocate for more longitudinal educational opportunities in this field to ensure current and future physicians can provide care to this population.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"340-344"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47157584","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Operationalisation of self-determination of persons with profound intellectual and multiple disabilities: A Delphi study.","authors":"S Nijs, M Zijlmans, C Schuengel, P J C M Embregts","doi":"10.3109/13668250.2022.2147053","DOIUrl":"10.3109/13668250.2022.2147053","url":null,"abstract":"<p><strong>Background: </strong>The high support needs of persons with profound intellectual and multiple disabilities hamper their possibilities for self-determination. To support their self-determination understanding of what this means for this group is necessary.</p><p><strong>Method: </strong>A three-round Delphi procedure with international experts was undertaken to operationalise self-determination for persons with profound intellectual and multiple disabilities. The quantitative output of Likert scales guided us in finding consensus or differences in the qualitative data. First round qualitative data were analysed thematically.</p><p><strong>Results: </strong>The analysis revealed four topics: (1) statements regarding the characteristics of the person with profound intellectual and multiple disabilities, (2) statements regarding characteristics of the social environment, (3) statements regarding the concept of self-determination, and (4) statements regarding the definition and operationalisation of concepts.</p><p><strong>Conclusion: </strong>Consensus was found on the assumption that persons with profound intellectual and multiple disabilities can live a self-determined life and on the importance of the interplay between persons with profound intellectual and multiple disabilities and the environment in order to experience self-determination.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"300-312"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46020338","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rocio Izquierdo-Gómez, Irene Esteban-Cornejo, Verónica Cabanas-Sánchez, Ascensión Marcos, Sonia Gómez-Martínez, José Castro-Piñero, Óscar L Veiga
{"title":"Are obesity and physical fitness associated with cardiovascular disease risk in adolescents with Down syndrome? The longitudinal UP&DOWN study.","authors":"Rocio Izquierdo-Gómez, Irene Esteban-Cornejo, Verónica Cabanas-Sánchez, Ascensión Marcos, Sonia Gómez-Martínez, José Castro-Piñero, Óscar L Veiga","doi":"10.3109/13668250.2023.2188876","DOIUrl":"10.3109/13668250.2023.2188876","url":null,"abstract":"<p><strong>Introduction: </strong>The aims of this study were to examine cross-sectional, and longitudinal association of different measures of obesity and physical fitness with cardiovascular disease (CVD) risk factors in adolescents with Down syndrome.</p><p><strong>Methods: </strong>Longitudinal analysis included 90 adolescents with Down syndrome. Obesity and physical fitness were measured following the ALPHA battery. Blood pressure and blood samplings (glucose, total cholesterol, high-density lipoprotein cholesterol, and serum lipid triglycerides levels (mg/dl) were determinated.</p><p><strong>Results: </strong>In cross-sectional analyses, obesity was positively associated with single CVD risk factors and CVD risk factor index (all <i>p</i> < .05). In the prospective analyses, obesity was not associated with single CVD risk factors, but components of physical fitness at baseline impact in some single CVD risk factors (all <i>p</i> < .05).</p><p><strong>Conclusion: </strong>Obesity might be more strongly related to current cardiovascular-health, while components of physical fitness might be more related to future cardiovascular-health in adolescents with Down syndrome.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"247-259"},"PeriodicalIF":1.9,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48825802","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding parental physical activity behaviours in parents of children with disabilities: An expanded theory of planned behaviour approach.","authors":"Byungmo Ku, Justin A Haegele","doi":"10.3109/13668250.2022.2104448","DOIUrl":"10.3109/13668250.2022.2104448","url":null,"abstract":"<p><strong>Background: </strong>The purpose of the current study was to examine association between physical activity (PA) of parents of children with developmental disabilities and theory of planned behaviour-related variables.</p><p><strong>Methods: </strong>A total of 95 participants completed questionnaires that measured the following variables: PA behaviours, action planning, intention, affective attitude, instrumental attitude. A path analysis was used to examine the associations between the variables.</p><p><strong>Results: </strong>Among participants, 40% did not meet the PA guideline. PA affective attitude was positively associated with PA intention (<i>β</i> = 0.30, <i>p</i> = .009) and PA action planning (<i>β</i> = .22, <i>p</i> = .03). In turn, both PA intention and PA action planning were associated with moderate-to-vigorous PA in parents of children with developmental disabilities (<i>β</i> = 0.23, <i>p</i> = .008; <i>β</i> = 0.52, <i>p</i> < .001, respectively).</p><p><strong>Conclusion: </strong>Physical activity in parents of children with developmental disabilities were appropriately explained by theory of planned behaviour-related variables.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"117-126"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42730509","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Monica Isabel Olsen, Erik Søndenaa, Ellen Melbye Langballe, Marianne Berg Halvorsen, Per Wilhelmsen, Erik Bautz-Holter, Audny Anke
{"title":"Use of health and dental care services in adults with intellectual disability in relation to age and intellectual disability levels.","authors":"Monica Isabel Olsen, Erik Søndenaa, Ellen Melbye Langballe, Marianne Berg Halvorsen, Per Wilhelmsen, Erik Bautz-Holter, Audny Anke","doi":"10.3109/13668250.2022.2109823","DOIUrl":"10.3109/13668250.2022.2109823","url":null,"abstract":"<p><strong>Background: </strong>This study investigates the use of health and dental care services in adults with intellectual disability in the last 12 months according to Norwegian recommendations and in relation to age and intellectual disability levels.</p><p><strong>Method: </strong>A cross-sectional community-based survey including 214 participants (56% men). POMONA health indicators were used for data collection.</p><p><strong>Results: </strong>Health checks and contact with general practitioners in the last year increased with age but were less frequent in those with more severe intellectual disability. Hospital admissions were age independent. Less than one-fifth of women had undergone cancer screening, with small variations according to intellectual disability severity levels. Few had an individual plan. More than one-third experienced poor dental health despite frequent controls.</p><p><strong>Conclusions: </strong>The use of health checks was lower than recommended, especially in individuals with more severe intellectual disability. Service access and individual plan use need to be enhanced, and dental care services should be improved.<b>Trial registration:</b> ClinicalTrials.gov identifier: NCT03889002.</p>","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":"48 1","pages":"172-183"},"PeriodicalIF":1.9,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46886762","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}