Pub Date : 2025-09-01Epub Date: 2024-08-23DOI: 10.1177/17446295241276029
Ryan DeCarsky, Heather D Evans, Hannah Kaufman, Kurt Johnson, Mark Harniss
Adults with intellectual disabilities in community residential programs receive services from direct support professionals (DSPs) intended to facilitate community engagement. As part of a rate study for Washington State's Developmental Disabilities Administration on community residential services, adults in these programs were asked to provide their perspective on the quality and effectiveness of their care. Twenty-five adults with intellectual disabilities were interviewed focusing on daily activities, staffing, and living situations. Interview transcripts were coded and analyzed for dominant themes. Participants emphasized the desire for trustworthy, caring, and respectful DSPs; DSPs trained in behavioral management techniques made participants feel safe and supported. Nearly all participants called for greater staffing stability. People living in community residential programs are profoundly impacted by the stress and uncertainty of DSPs facing limited resources and high staff turnover. Stable, consistent support makes it easier for participants to engage in community integration.
{"title":"Trust, respect, and training: Principles of care for service professionals supporting adults with intellectual disabilities in community residential programs.","authors":"Ryan DeCarsky, Heather D Evans, Hannah Kaufman, Kurt Johnson, Mark Harniss","doi":"10.1177/17446295241276029","DOIUrl":"10.1177/17446295241276029","url":null,"abstract":"<p><p>Adults with intellectual disabilities in community residential programs receive services from direct support professionals (DSPs) intended to facilitate community engagement. As part of a rate study for Washington State's Developmental Disabilities Administration on community residential services, adults in these programs were asked to provide their perspective on the quality and effectiveness of their care. Twenty-five adults with intellectual disabilities were interviewed focusing on daily activities, staffing, and living situations. Interview transcripts were coded and analyzed for dominant themes. Participants emphasized the desire for trustworthy, caring, and respectful DSPs; DSPs trained in behavioral management techniques made participants feel safe and supported. Nearly all participants called for greater staffing stability. People living in community residential programs are profoundly impacted by the stress and uncertainty of DSPs facing limited resources and high staff turnover. Stable, consistent support makes it easier for participants to engage in community integration.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"667-682"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142044181","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 : 2025-09-01Epub 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":"629-650"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397527/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2024-03-26DOI: 10.1177/17446295241242573
Nancy Phyllis Makhosazane Mabaso
Parental involvement in providing learning support plays a crucial role in children's academic achievement. However, this support is often constrained when children are diagnosed with mild intellectual disabilities and require additional assistance. This study aimed to explore the experiences of parents in supporting children with such diagnoses. Adopting a phenomenological design within an interpretive paradigm and qualitative approach, data were collected from 23 purposefully selected parents of learners with mild intellectual disabilities attending three inclusive schools in disadvantaged areas of Gauteng, South Africa. Semi-structured interviews were used, and the data were analyzed through thematic content analysis, with Bronfenbrenner's bio-ecological systems theory serving as the framework. The results indicated that parents' misunderstanding of mild intellectual disability posed a significant barrier to effective learning support. The study concluded that empowering parents through psycho-education is essential, highlighting the need for adjustments in policy and practice.
{"title":"\"All I know is that a disabled person is someone who is crippled\": Using narratives of parents to unmask the misconceptions of mild intellectual disabilities concept as a learning support hindrance.","authors":"Nancy Phyllis Makhosazane Mabaso","doi":"10.1177/17446295241242573","DOIUrl":"10.1177/17446295241242573","url":null,"abstract":"<p><p>Parental involvement in providing learning support plays a crucial role in children's academic achievement. However, this support is often constrained when children are diagnosed with mild intellectual disabilities and require additional assistance. This study aimed to explore the experiences of parents in supporting children with such diagnoses. Adopting a phenomenological design within an interpretive paradigm and qualitative approach, data were collected from 23 purposefully selected parents of learners with mild intellectual disabilities attending three inclusive schools in disadvantaged areas of Gauteng, South Africa. Semi-structured interviews were used, and the data were analyzed through thematic content analysis, with Bronfenbrenner's bio-ecological systems theory serving as the framework. The results indicated that parents' misunderstanding of mild intellectual disability posed a significant barrier to effective learning support. The study concluded that empowering parents through psycho-education is essential, highlighting the need for adjustments in policy and practice.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"555-573"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397532/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140289257","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2023-07-12DOI: 10.1177/17446295231189020
Hannah Casey, Áine Trayer, Deirdre Desmond, Laura Coffey
Decisional support is important to people with intellectual disabilities. This review explores: i) how everyday decision-making is perceived and/or experienced by adults with intellectual disability, their care partners and direct care support workers (DCSWs); ii) techniques/ approaches used to support everyday decision-making; and iii) barriers/facilitators encountered. PRISMA systematic review methodology using PsycInfo, PubMED, Web of Science, CINAHL and Scopus. Eighty-one papers were included [qualitative (n = 69), quantitative (n = 7), mixed methods (n = 5)] was used. Adults with intellectual disability reported wanting to makedecisions and needing support. Care partner support was affected by concerns about safety and decisional capacity. DCSWs reported difficulty balancing client decisions and care partner concerns when providing support. Supported Decision-Making (SDM) was identified as a key method of support. Barriers and facilitators were interconnected and impacted by stressors. This topic is under-researched and ill-defined. Supported decision-making is an increasingly popular approach whose application requires further exploration.
背景:决策支持对智障人士很重要。本综述探讨:i)智力残疾成人、其护理伙伴和直接护理支持工作者(DCSWs)如何感知和/或体验日常决策;Ii)用于支持日常决策的技术/方法;iii)遇到的障碍/促成因素。方法:PRISMA系统评价方法,使用PsycInfo、PubMED、Web of Science、CINAHL和Scopus。结果:共纳入论文81篇[定性(n = 69)、定量(n = 7)、混合方法(n = 5)]。智力残疾的成年人报告说,他们想要做决定,需要支持。对安全和决策能力的担忧影响了护理伙伴的支持。DCSWs报告在提供支持时难以平衡客户决定和护理伙伴的关切。支持性决策(SDM)是一种关键的支持方法。障碍和促进者相互联系,并受到压力源的影响。结论:本课题研究不足,定义不清。辅助决策是一种日益流行的方法,其应用需要进一步探索。
{"title":"Experiences and perceptions of everyday decision-making in the lives of adults with intellectual disabilities, their care partners and direct care support workers.","authors":"Hannah Casey, Áine Trayer, Deirdre Desmond, Laura Coffey","doi":"10.1177/17446295231189020","DOIUrl":"10.1177/17446295231189020","url":null,"abstract":"<p><p>Decisional support is important to people with intellectual disabilities. This review explores: i) how everyday decision-making is perceived and/or experienced by adults with intellectual disability, their care partners and direct care support workers (DCSWs); ii) techniques/ approaches used to support everyday decision-making; and iii) barriers/facilitators encountered. PRISMA systematic review methodology using PsycInfo, PubMED, Web of Science, CINAHL and Scopus. Eighty-one papers were included [qualitative (<i>n</i> = 69), quantitative (<i>n</i> = 7), mixed methods (<i>n</i> = 5)] was used. Adults with intellectual disability reported wanting to makedecisions and needing support. Care partner support was affected by concerns about safety and decisional capacity. DCSWs reported difficulty balancing client decisions and care partner concerns when providing support. Supported Decision-Making (SDM) was identified as a key method of support. Barriers and facilitators were interconnected and impacted by stressors. This topic is under-researched and ill-defined. Supported decision-making is an increasingly popular approach whose application requires further exploration.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"683-705"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397535/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9767574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2024-09-03DOI: 10.1177/17446295241278477
Christine A McAllister, Meredith A Rausch, Victoria E Kress
Individuals with an intellectual developmental disorder are four times more likely to have a co-occurring mental health diagnosis, as compared to the general population, and 60%-80% of individuals with IDDs have experienced at least one form of abuse. However, counselors receive little training to adequately help this population. In this article, counseling considerations related to individuals who have intellectual development disorder are discussed, with a particular focus on the presence of trauma in this population. Trauma-focused treatment, potential mental health issues, counseling considerations, general issues related to counseling this population, and common associated mental health experiences among this population are addressed. Specific evidence-based counseling approaches, modifications to counseling, and best practices that can be helpful when counseling this population are presented. Due to the unique challenges that individuals with IDDs face, it is essential that counselors address the counseling and mental health needs of this population.
{"title":"Trauma-informed counseling for individuals who have an intellectual developmental disorder: Considerations for mental health counselors.","authors":"Christine A McAllister, Meredith A Rausch, Victoria E Kress","doi":"10.1177/17446295241278477","DOIUrl":"10.1177/17446295241278477","url":null,"abstract":"<p><p>Individuals with an intellectual developmental disorder are four times more likely to have a co-occurring mental health diagnosis, as compared to the general population, and 60%-80% of individuals with IDDs have experienced at least one form of abuse. However, counselors receive little training to adequately help this population. In this article, counseling considerations related to individuals who have intellectual development disorder are discussed, with a particular focus on the presence of trauma in this population. Trauma-focused treatment, potential mental health issues, counseling considerations, general issues related to counseling this population, and common associated mental health experiences among this population are addressed. Specific evidence-based counseling approaches, modifications to counseling, and best practices that can be helpful when counseling this population are presented. Due to the unique challenges that individuals with IDDs face, it is essential that counselors address the counseling and mental health needs of this population.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"798-813"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142126979","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 : 2025-09-01Epub Date: 2024-05-08DOI: 10.1177/17446295241252214
Fiona A Clements, Lisa J Orchard, Darren D Chadwick
This scoping review examines cyberbullying victimisation in people with mild to moderate intellectual disabilities, focusing on specific types of cyberbullying behaviours, such as flaming, harassment, and stalking. A five-stage review of empirical research was conducted using 15 electronic databases, covering publications from October 1969 to January 2024. Twelve studies were selected, reporting cyberbullying victimisation rates ranging from 5% to 64%. Harassment was the most common behaviour experienced. However, flaming, cyber-stalking, griefing, and shaming have not been thoroughly investigated. The impact and coping strategies, including support mechanisms, also lack research. Further investigation is needed to understand the various types of cyberbullying experienced by people with intellectual disabilities and to develop coping and resilience strategies. Recommendations for future research and practice are provided.
{"title":"A scoping review investigating the perspectives of people with mild to moderate intellectual disabilities on experiences of cyberbullying victimisation and its subtypes.","authors":"Fiona A Clements, Lisa J Orchard, Darren D Chadwick","doi":"10.1177/17446295241252214","DOIUrl":"10.1177/17446295241252214","url":null,"abstract":"<p><p>This scoping review examines cyberbullying victimisation in people with mild to moderate intellectual disabilities, focusing on specific types of cyberbullying behaviours, such as flaming, harassment, and stalking. A five-stage review of empirical research was conducted using 15 electronic databases, covering publications from October 1969 to January 2024. Twelve studies were selected, reporting cyberbullying victimisation rates ranging from 5% to 64%. Harassment was the most common behaviour experienced. However, flaming, cyber-stalking, griefing, and shaming have not been thoroughly investigated. The impact and coping strategies, including support mechanisms, also lack research. Further investigation is needed to understand the various types of cyberbullying experienced by people with intellectual disabilities and to develop coping and resilience strategies. Recommendations for future research and practice are provided.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"743-759"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397522/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140892836","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub 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) supported decision-making sometimes requires careful facilitation with a focus on the person's preferences/perspective; this careful facilitation can be understood in terms 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":"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) supported decision-making sometimes requires careful facilitation with a focus on the person's preferences/perspective; this careful facilitation can be understood in terms 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":"651-666"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397556/pdf/","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2024-06-18DOI: 10.1177/17446295241246569
Suzanne Lokman, Roland Bal, Robert Didden, Petri Jcm Embregts
This qualitative study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Feelings of safety were related to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Many of these factors were interconnected. Future research should explore what residential service organisations for people with intellectual disabilities and external actors (e.g. the police) can do to promote service users' feelings of safety.
{"title":"Factors affecting the feelings of safety among individuals with mild intellectual disabilities and severe challenging behaviour in residential care: A qualitative study of professional and service users' perspectives.","authors":"Suzanne Lokman, Roland Bal, Robert Didden, Petri Jcm Embregts","doi":"10.1177/17446295241246569","DOIUrl":"10.1177/17446295241246569","url":null,"abstract":"<p><p>This qualitative study focuses on what feeling safe means for people with mild intellectual disabilities and severe challenging behaviour, and which factors affect their sense of safety. Thematic analysis was used to analyse data collected during (1) ethnographic longitudinal research and (2) interviews and focus groups among professionals and service users. Feelings of safety were related to three main themes: (1) a physical environment that reduces risks and temptations; (2) a reliable, predictable, and supportive environment; and (3) an accepting environment that enables service users to establish a normal life. An analysis of which factors affect service users' sense of safety identified 20 themes (e.g. team climate) and 34 subthemes (e.g. interactions with other service users). Many of these factors were interconnected. Future research should explore what residential service organisations for people with intellectual disabilities and external actors (e.g. the police) can do to promote service users' feelings of safety.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"607-628"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397534/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421387","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2023-07-18DOI: 10.1177/17446295231189912
Golnaz Ghaderi, Peter Milley, Rosemary Lysaght, Virginie Cobigo
We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.
{"title":"Including people with intellectual and other cognitive disabilities in research and evaluation teams: A scoping review of the empirical knowledge base.","authors":"Golnaz Ghaderi, Peter Milley, Rosemary Lysaght, Virginie Cobigo","doi":"10.1177/17446295231189912","DOIUrl":"10.1177/17446295231189912","url":null,"abstract":"<p><p>We conducted a rapid scoping review of empirical studies to identify how persons with intellectual and other cognitive disabilities have been engaged as active members of research and evaluation teams. We conducted a literature search using a systematic method that accessed peer reviewed studies in relevant library databases and all major evaluation journals. The search resulted in 6,624 potential articles, of which 32 met the inclusion criteria for this study. The findings address three categories of interest: 1) methodological underpinnings and practical justifications for using inclusive approaches, 2) different inclusion processes, and 3) reflections by researchers with and without intellectual and other cognitive disabilities. Findings provide conceptual and practical insights for researchers and evaluators when designing inclusive methods involving persons with intellectual and other cognitive disabilities. Gaps in inclusive research and evaluation are discussed and suggestions for future research are proposed.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"706-726"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12397518/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9860800","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-09-01Epub Date: 2024-06-06DOI: 10.1177/17446295241259913
Laurie Lucassen, Romina Rinaldi, Elise Batsele
Disparities in healthcare are observed among people with intellectual disabilities. They generally face stigmatisation and negative attitudes from healthcare professionals. The aim of this study is to investigate the link of diagnostic label and social distance on inclusive health representations and practices towards people with intellectual disabilities among healthcare professionals. We conducted an online survey of 163 healthcare professionals living in French-speaking Belgium. The results highlighted that the diagnostic label and a lower social distance predict better representations and practices in inclusive health. In addition, an analysis of mediation showed the mediating effect of social distance on the link between being in contact with people with intellectual disabilities (through employment) and better representations and practices in inclusive health. This study enabled us to assess the interplay between stigma variables and healthcare professionals' representations and practices towards people with intellectual disabilities and to identify potential facilitators for promoting health equity.
{"title":"Interplay between representations, practices, and stigma variables towards people with intellectual disabilities among healthcare professionals: A cross-sectional study.","authors":"Laurie Lucassen, Romina Rinaldi, Elise Batsele","doi":"10.1177/17446295241259913","DOIUrl":"10.1177/17446295241259913","url":null,"abstract":"<p><p>Disparities in healthcare are observed among people with intellectual disabilities. They generally face stigmatisation and negative attitudes from healthcare professionals. The aim of this study is to investigate the link of diagnostic label and social distance on inclusive health representations and practices towards people with intellectual disabilities among healthcare professionals. We conducted an online survey of 163 healthcare professionals living in French-speaking Belgium. The results highlighted that the diagnostic label and a lower social distance predict better representations and practices in inclusive health. In addition, an analysis of mediation showed the mediating effect of social distance on the link between being in contact with people with intellectual disabilities (through employment) and better representations and practices in inclusive health. This study enabled us to assess the interplay between stigma variables and healthcare professionals' representations and practices towards people with intellectual disabilities and to identify potential facilitators for promoting health equity.</p>","PeriodicalId":46904,"journal":{"name":"Journal of Intellectual Disabilities","volume":" ","pages":"574-589"},"PeriodicalIF":1.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141262175","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}