Pub Date : 2024-11-19DOI: 10.1177/17446295241301851
Fatma Dinç, Aylin Kurt, Emine Güneş Şan
This qualitative study was conducted to identify how being a sibling of a child with intellectual disabilities is defined for the child, its implications from the perspective of mothers. Data were collected through in-depth individual interviews using a "Semi-structured interview form" between November 2023 and January 2024 with 14 mothers of children aged 12-18 who were studying in seven special education and rehabilitation centres in Türkiye. The semi-structured interview form included questions such as "Can you tell us about the relationship between your child with intellectual disability and his/her sibling?" Main themes and sub-themes were developed using thematic analysis. Four main themes were identified from the data through thematic analysis: (1) A special relationship (2) The need to be perfect (3) Guilt and shame (4) Restriction. The findings revealed both positive and negative aspects of being a sibling of children with intellectual disabilities from the mothers' perspective.
{"title":"Being a sibling of a child with intellectual disability from the perspective of mothers: A qualitative study.","authors":"Fatma Dinç, Aylin Kurt, Emine Güneş Şan","doi":"10.1177/17446295241301851","DOIUrl":"https://doi.org/10.1177/17446295241301851","url":null,"abstract":"<p><p>This qualitative study was conducted to identify how being a sibling of a child with intellectual disabilities is defined for the child, its implications from the perspective of mothers. Data were collected through in-depth individual interviews using a \"Semi-structured interview form\" between November 2023 and January 2024 with 14 mothers of children aged 12-18 who were studying in seven special education and rehabilitation centres in Türkiye. The semi-structured interview form included questions such as \"Can you tell us about the relationship between your child with intellectual disability and his/her sibling?\" Main themes and sub-themes were developed using thematic analysis. Four main themes were identified from the data through thematic analysis: (1) A special relationship (2) The need to be perfect (3) Guilt and shame (4) Restriction. The findings revealed both positive and negative aspects of being a sibling of children with intellectual disabilities from the mothers' perspective.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241301851"},"PeriodicalIF":1.5,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142677292","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}
Pub Date : 2024-11-13DOI: 10.1177/17446295241298333
{"title":"Corrigendum to \"Validity and reliability of the persian version of the world health organization quality of life disabilities module\".","authors":"","doi":"10.1177/17446295241298333","DOIUrl":"https://doi.org/10.1177/17446295241298333","url":null,"abstract":"","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241298333"},"PeriodicalIF":1.5,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142630402","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}
Down syndrome (DS), characterised by compromised brain development and intellectual challenges, often manifests Alzheimer's disease (AD) -like symptoms. Utilising the Web of Science Core Collection (WOSCC) database from January 1, 2000, to July 31, 2023, we conducted a comprehensive bibliometric analysis using VOSviewer, CiteSpace, and the R package "bibliometrix." Analyses included co-authorship, co-citation, co-occurrence, cooperative network, reference, and keyword burst citation. Analysing 5,082 papers, the U.S. demonstrated prominence with the highest number of research organisations and citations. Keyword analysis revealed promising research areas, including "Alzheimer's disease," "development," "inflammation," and "neurogenesis". This 22-year survey of the brain with trisomy 21 research unveils key trends, contributors, and focal areas in DS neuropathogenesis. Notably, Alzheimer 's-related genes and proteins play a pervasive role in DS neuropathological processes across patients' lifespans. The study contributes foundational knowledge for advancing research and care in the DS neuropathogenesis domain.
{"title":"Understanding perspectives and research trends in Down syndrome neuropathogenesis: A bibliometric analysis.","authors":"Tan Huang, Xin-Jieh Lam, Chong-Teik Lim, Norhazlin Jusoh, Sharida Fakurazi, Pike-See Cheah, King-Hwa Ling","doi":"10.1177/17446295241299160","DOIUrl":"https://doi.org/10.1177/17446295241299160","url":null,"abstract":"<p><p>Down syndrome (DS), characterised by compromised brain development and intellectual challenges, often manifests Alzheimer's disease (AD) -like symptoms. Utilising the Web of Science Core Collection (WOSCC) database from January 1, 2000, to July 31, 2023, we conducted a comprehensive bibliometric analysis using VOSviewer, CiteSpace, and the R package \"bibliometrix.\" Analyses included co-authorship, co-citation, co-occurrence, cooperative network, reference, and keyword burst citation. Analysing 5,082 papers, the U.S. demonstrated prominence with the highest number of research organisations and citations. Keyword analysis revealed promising research areas, including \"Alzheimer's disease,\" \"development,\" \"inflammation,\" and \"neurogenesis\". This 22-year survey of the brain with trisomy 21 research unveils key trends, contributors, and focal areas in DS neuropathogenesis. Notably, Alzheimer 's-related genes and proteins play a pervasive role in DS neuropathological processes across patients' lifespans. The study contributes foundational knowledge for advancing research and care in the DS neuropathogenesis domain.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241299160"},"PeriodicalIF":1.5,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142630404","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}
Pub Date : 2024-11-08DOI: 10.1177/17446295241299153
Baukje Schippers, Sien Vandesande, Maroesjka van Nieuwenhuijzen, Brenda Frederiks, Marleen de Moor, Danielle Immers, Carlo Schuengel
Background: Minimizing restrictive measures is an important lever to promote self-determination for people with intellectual disabilities. Aims: This study assesses the efficacy of the Multidisciplinary Expertise Team (MDET) program in reducing such measures within Dutch sheltered care homes for people with intellectual disabilities. Methods and Procedures: A clustered randomized trial encompassed 30 residential units, reporting 428 measures on 107 residents through an organization-wide registration system. Units were randomly assigned to the MDET program or care-as-usual. Outcomes and Results: Units assigned to the MDET-program reported a significant stronger reduction in restrictive measures compared to the care-as-usual units (40% versus 20%). Conclusions and Implications: The MDET program shows promise in decreasing restrictive measures by enhancing awareness and sharing expertise across disciplines at staff and resident levels.
{"title":"Effectiveness of a Multidisciplinary Expertise Team in the reduction of restrictive measures in sheltered care homes for people with an intellectual disability.","authors":"Baukje Schippers, Sien Vandesande, Maroesjka van Nieuwenhuijzen, Brenda Frederiks, Marleen de Moor, Danielle Immers, Carlo Schuengel","doi":"10.1177/17446295241299153","DOIUrl":"https://doi.org/10.1177/17446295241299153","url":null,"abstract":"<p><p><b>Background:</b> Minimizing restrictive measures is an important lever to promote self-determination for people with intellectual disabilities. <b>Aims:</b> This study assesses the efficacy of the Multidisciplinary Expertise Team (MDET) program in reducing such measures within Dutch sheltered care homes for people with intellectual disabilities. <b>Methods and Procedures:</b> A clustered randomized trial encompassed 30 residential units, reporting 428 measures on 107 residents through an organization-wide registration system. Units were randomly assigned to the MDET program or care-as-usual. <b>Outcomes and Results:</b> Units assigned to the MDET-program reported a significant stronger reduction in restrictive measures compared to the care-as-usual units (40% versus 20%). <b>Conclusions and Implications:</b> The MDET program shows promise in decreasing restrictive measures by enhancing awareness and sharing expertise across disciplines at staff and resident levels.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241299153"},"PeriodicalIF":1.5,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142606969","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}
Pub Date : 2024-10-30DOI: 10.1177/17446295241297184
Sadeta Demic, Rosemarie van den Breemer, Halvor Hanisch, Inger Marie Lid
The UN Convention on the Rights of Persons with Disabilities (CRPD) describes supported decision making as a fundamental human right. This study explores relatives' experiences, dilemmas, as well as key factors in supported decision-making processes with adults with intellectual disabilities living in municipal housing. The study draws on qualitative, in-depth interviews with relatives. Findings suggest that we can learn about supported decision making by using choice architecture and care theories, demonstrating that: (a) care sometimes requires facilitating for making decisions, what we here understands in light of choice architecture, (b) choice architecture in the context of intellectual disability requires an intentionality of care and a focus on the person's preferences/perspective, (c) relatives are concerned, not only with support in the moment, but also the effect of the decision in the long term, and (d) relatives' care is a significant factor in meeting choice architecture in systemic conditions.
{"title":"Care and choice architecture: Relatives' support for adults with intellectual disabilities in supported decision-making processes.","authors":"Sadeta Demic, Rosemarie van den Breemer, Halvor Hanisch, Inger Marie Lid","doi":"10.1177/17446295241297184","DOIUrl":"https://doi.org/10.1177/17446295241297184","url":null,"abstract":"<p><p>The UN Convention on the Rights of Persons with Disabilities (CRPD) describes supported decision making as a fundamental human right. This study explores relatives' experiences, dilemmas, as well as key factors in supported decision-making processes with adults with intellectual disabilities living in municipal housing. The study draws on qualitative, in-depth interviews with relatives. Findings suggest that we can learn about supported decision making by using choice architecture and care theories, demonstrating that: (a) care sometimes requires facilitating for making decisions, what we here understands in light of choice architecture, (b) choice architecture in the context of intellectual disability requires an intentionality of care and a focus on the person's preferences/perspective, (c) relatives are concerned, not only with support in the moment, but also the effect of the decision in the long term, and (d) relatives' care is a significant factor in meeting choice architecture in systemic conditions.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241297184"},"PeriodicalIF":1.5,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548260","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}
Pub Date : 2024-10-25DOI: 10.1177/17446295241296215
Munazza Tahir, Virginie Cobigo
Research on the lived experience of Canadian parents with intellectual disabilities involved in child protection is limited, particularly inclusive research with parents with intellectual disabilities involved in Canada's changing child protection system. This inclusive study was done in collaboration with a co-researcher with intellectual disabilities who had lived experience as a parent. 13 parents from three Canadian regions participated in semistructured interviews about their involvement in child protection. Four major themes emerged in the findings: 1) key supports that contributed to positive outcomes; 2) parents' attitudes toward child protection agencies and perceived attitudes about themselves; 3) systemic barriers impacting accessibility and the child protection experience; and 4) parents' advice to other parents and professionals in child protection. This study provides a promising picture of child protection agencies as a key support despite existing barriers. Implications for social service providers are offered and areas for further exploration are discussed.
{"title":"\"They helped me stand on my own two feet\": Canadian parents with intellectual disabilities in child protection.","authors":"Munazza Tahir, Virginie Cobigo","doi":"10.1177/17446295241296215","DOIUrl":"https://doi.org/10.1177/17446295241296215","url":null,"abstract":"<p><p>Research on the lived experience of Canadian parents with intellectual disabilities involved in child protection is limited, particularly inclusive research with parents with intellectual disabilities involved in Canada's changing child protection system. This inclusive study was done in collaboration with a co-researcher with intellectual disabilities who had lived experience as a parent. 13 parents from three Canadian regions participated in semistructured interviews about their involvement in child protection. Four major themes emerged in the findings: 1) key supports that contributed to positive outcomes; 2) parents' attitudes toward child protection agencies and perceived attitudes about themselves; 3) systemic barriers impacting accessibility and the child protection experience; and 4) parents' advice to other parents and professionals in child protection. This study provides a promising picture of child protection agencies as a key support despite existing barriers. Implications for social service providers are offered and areas for further exploration are discussed.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241296215"},"PeriodicalIF":1.5,"publicationDate":"2024-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142510268","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}
Pub Date : 2024-10-21DOI: 10.1177/17446295241292238
Kelly Fraser, Mark Clayden, Ben Piggott, Duncan Picknoll
In recent years, there is an increasing number of individuals accessing integrated community sport clubs in Australia. The objective of this study was to explore the benefits and barriers of participating in community sport directly from the perspectives of the individuals with the intellectual disability. This qualitative study provided an appreciation of the lived experienced of participating in community sport for individuals with intellectual disabilities. A total of 29 participants shared their personal lived experiences in a series of focus groups. Data from the focus groups was transcribed and coded using a thematic analysis. Results highlight that participation in community sport increased exposure to social capital, ameliorated interpersonal skills, confidence, leadership, and respect, in addition to enhancing ability to develop and achieve personal goals. Findings illustrate the need for increased awareness about community integrated sport in schools and communities to increase participation in the programs.
{"title":"Benefits and barriers of participating in community sport for individuals with an intellectual disability.","authors":"Kelly Fraser, Mark Clayden, Ben Piggott, Duncan Picknoll","doi":"10.1177/17446295241292238","DOIUrl":"https://doi.org/10.1177/17446295241292238","url":null,"abstract":"<p><p>In recent years, there is an increasing number of individuals accessing integrated community sport clubs in Australia. The objective of this study was to explore the benefits and barriers of participating in community sport directly from the perspectives of the individuals with the intellectual disability. This qualitative study provided an appreciation of the lived experienced of participating in community sport for individuals with intellectual disabilities. A total of 29 participants shared their personal lived experiences in a series of focus groups. Data from the focus groups was transcribed and coded using a thematic analysis. Results highlight that participation in community sport increased exposure to social capital, ameliorated interpersonal skills, confidence, leadership, and respect, in addition to enhancing ability to develop and achieve personal goals. Findings illustrate the need for increased awareness about community integrated sport in schools and communities to increase participation in the programs.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241292238"},"PeriodicalIF":1.5,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477507","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}
Pub Date : 2024-10-14DOI: 10.1177/17446295241292483
Mahmoud Gharaibeh, Ziyad Kamel Ellala
This study investigates UAE teachers' beliefs and practices regarding vocational rehabilitation (VR) services for individuals with intellectual disabilities. The study used a descriptive survey methodology with a 30-item Likert scale questionnaire. The sample size consisted of 121 VR teachers in the Emirate of Abu Dhabi. The data was analyzed using Fisher's exact test and the Chi-square test. Male teachers (P<0.0063) and diploma in special education holders (P<0.0272) were significantly good at career counseling, while female teachers and bachelor's in education degree holders were good at vocational training (P<0.0039 and P<0.0001, respectively) and placement (P<0.0006 and P<0.001). Educators with 1-5 and 6-10 years of experience had more positive beliefs and practices than their more experienced counterparts in terms of VR services. VR instructors have an important role in improving the results and opportunities for people with intellectual disabilities, and their empowerment and professional development should be endorsed.
{"title":"Assessing teachers' beliefs and practices regarding vocational rehabilitation services for individuals with intellectual disabilities.","authors":"Mahmoud Gharaibeh, Ziyad Kamel Ellala","doi":"10.1177/17446295241292483","DOIUrl":"https://doi.org/10.1177/17446295241292483","url":null,"abstract":"<p><p>This study investigates UAE teachers' beliefs and practices regarding vocational rehabilitation (VR) services for individuals with intellectual disabilities. The study used a descriptive survey methodology with a 30-item Likert scale questionnaire. The sample size consisted of 121 VR teachers in the Emirate of Abu Dhabi. The data was analyzed using Fisher's exact test and the Chi-square test. Male teachers (P<0.0063) and diploma in special education holders (P<0.0272) were significantly good at career counseling, while female teachers and bachelor's in education degree holders were good at vocational training (P<0.0039 and P<0.0001, respectively) and placement (P<0.0006 and P<0.001). Educators with 1-5 and 6-10 years of experience had more positive beliefs and practices than their more experienced counterparts in terms of VR services. VR instructors have an important role in improving the results and opportunities for people with intellectual disabilities, and their empowerment and professional development should be endorsed.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241292483"},"PeriodicalIF":1.5,"publicationDate":"2024-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142477506","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}
Pub Date : 2024-10-08DOI: 10.1177/17446295241276245
Anna Hart, Charlotta Löfgren, Charlotta Carlström, Eva Elmerstig
Research shows that young adults with intellectual disabilities struggle to understand the social codes embedded in sexual situations. This may lead to an incomprehension of sexual consent, or when consenting to sex may lead to abuse. This qualitative study aimed to gain an in-depth understanding of sexual experiences and perceptions about sexual consent among Swedish young adults with intellectual disabilities. The data comprise 22 semi-structured interviews with young adults aged 18-35 with intellectual disabilities, thematically analyzed using sexual script theory as a theoretical framework. Four themes emerged from the analysis: Setting the sexual scene, Sexual self-awareness, Sexual communication and the necessity of clarification and Striving for a balance. The results show that the participants had a variety of sexual experiences and challenges associated with sexual consent, but also an agency that favors sexual situations. Further research is necessary to understand the complexities of sexual consent in this population.
{"title":"A thin line between consent and abuse - Reflections on sexual experiences among Swedish young adults with intellectual disabilities.","authors":"Anna Hart, Charlotta Löfgren, Charlotta Carlström, Eva Elmerstig","doi":"10.1177/17446295241276245","DOIUrl":"10.1177/17446295241276245","url":null,"abstract":"<p><p>Research shows that young adults with intellectual disabilities struggle to understand the social codes embedded in sexual situations. This may lead to an incomprehension of sexual consent, or when consenting to sex may lead to abuse. This qualitative study aimed to gain an in-depth understanding of sexual experiences and perceptions about sexual consent among Swedish young adults with intellectual disabilities. The data comprise 22 semi-structured interviews with young adults aged 18-35 with intellectual disabilities, thematically analyzed using sexual script theory as a theoretical framework. Four themes emerged from the analysis: Setting the sexual scene, Sexual self-awareness, Sexual communication and the necessity of clarification and Striving for a balance. The results show that the participants had a variety of sexual experiences and challenges associated with sexual consent, but also an agency that favors sexual situations. Further research is necessary to understand the complexities of sexual consent in this population.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"17446295241276245"},"PeriodicalIF":16.4,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394186","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}