Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Assessing Self-Determination: International Efforts to Translate the Self-Determination Inventory","authors":"Karrie A. Shogren,&nbsp;Mayumi Hagiwara,&nbsp;Abdulaziz H. Alsaeed,&nbsp;Yves Lachapelle,&nbsp;Vassilis Argyropoulos,&nbsp;Anna Theodori,&nbsp;Sara Santilli,&nbsp;Yunfeng Wang,&nbsp;Clarissa Moreira,&nbsp;Sofia Santos,&nbsp;André Oliveira,&nbsp;Armanda Pereira,&nbsp;Pedro Rosário,&nbsp;Clara Andrés-Gárriz,&nbsp;Cristina Mumbardó-Adam","doi":"10.1111/jppi.70070","DOIUrl":"https://doi.org/10.1111/jppi.70070","url":null,"abstract":"<p>Promoting self-determination has become an area of focus across the globe because of advocacy, policy, and research highlighting its role in improving the quality of life of people with disabilities. There have also been advancements in theories and research focused on how self-determination is defined and supported across cultures. In this article, we explore information shared by a group of international translation teams working to translate an assessment of self-determination, the Self-Determination Inventory (SDI), and the theory that underlies the assessment, Casual Agency Theory, from American English. Findings suggest universal and context-specific issues that impact translation and variation in the familiarity and contextual fit of self-determination and Casual Agency Theory constructs across cultures. Implications for research focused on developing and translating new theories and constructs across cultures to promote cross-cultural validity are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70070","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148467425","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}

{"title":"The Accessibility of Government Information for People With Intellectual and Developmental Disabilities: Findings From a National Survey","authors":"Yousef Safar,&nbsp;Tiziana Volpe,&nbsp;Sabrina Campanella,&nbsp;Rachel Mills,&nbsp;Donna Brown,&nbsp;Michael McLellan,&nbsp;Monica Schroeder,&nbsp;Yona Lunsky","doi":"10.1111/jppi.70068","DOIUrl":"https://doi.org/10.1111/jppi.70068","url":null,"abstract":"<p>Information plays an important role in people's daily lives, and government information is especially critical as it encompasses a wide range of services and topics. People with intellectual and developmental disabilities (IDD) can encounter challenges when finding and understanding information, resulting in barriers to accessing and using vital information and services. This study explores how adults with IDD, their family and friends, and support staff find and understand information, specifically information shared by the Canadian government. An anonymous, cross-sectional survey was co-developed with members of local and national IDD advisory groups, including people with IDD, and distributed across Canada between March and July 2022. The survey was available in digital and print versions, with the option to receive support for completion. In total, 399 respondents participated: 219 people with IDD, 110 family/friends, and 70 support staff. The majority of participants accessed government information using the Internet, with common search topics related to finances, photo identification, and health. Respondents generally preferred having both print and digital formats available. Findings also emphasized the significant and varied roles of information liaisons, such as family and staff, in assisting people with IDD in finding and understanding information. Effective strategies and formats included reviewing information multiple times and at a slow pace, having someone explain it, and using pictures. To meet the accessibility needs of people with IDD, government agencies in Canada and internationally should provide information in multiple formats and through various sources. Additionally, when developing communications, it is essential to consult not only with families and staff but also with people with IDD themselves, as their insights are crucial in creating effective, accessible information (see Easy Read Summary at the end of this article).</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70068","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148395149","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}

{"title":"Navigating Challenges and Refining Methods for Randomized Controlled Trials Including Young People With Intellectual Disabilities: Empirical and Literature-Informed Insights","authors":"Kristin Alfredsson Ågren,&nbsp;Pontus Henriksson,&nbsp;Stefan Johansson,&nbsp;Mårten J. Tyrberg,&nbsp;Jens Ineland,&nbsp;Darren Chadwick,&nbsp;Ulrika Müssener","doi":"10.1111/jppi.70066","DOIUrl":"https://doi.org/10.1111/jppi.70066","url":null,"abstract":"<p>People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324598","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}

{"title":"Navigating Challenges and Refining Methods for Randomized Controlled Trials Including Young People With Intellectual Disabilities: Empirical and Literature-Informed Insights","authors":"Kristin Alfredsson Ågren,&nbsp;Pontus Henriksson,&nbsp;Stefan Johansson,&nbsp;Mårten J. Tyrberg,&nbsp;Jens Ineland,&nbsp;Darren Chadwick,&nbsp;Ulrika Müssener","doi":"10.1111/jppi.70066","DOIUrl":"https://doi.org/10.1111/jppi.70066","url":null,"abstract":"<p>People with intellectual disabilities experience poorer health than the general population, largely due to preventable non-communicable diseases. Although randomized controlled trials (RCTs) are the gold standard for evaluating health promotion interventions, they are rarely conducted with young people with intellectual disabilities because of inadequate research procedures. This methodological paper draws empirical insights from a research program and relevant literature involving co-design and an upcoming RCT of a digital health promotion intervention. Using the core RCT components, randomization, control, and trial procedures as an analytical framework, the paper integrates empirical experience and literature to examine challenges in conducting inclusive RCTs. Participation and accessibility emerged as overarching methodological considerations influencing recruitment, retention, engagement, statistical power, generalizability, and overall trial validity. Empirical experiences illustrated how relational, organizational, and methodological adaptations can address these challenges in practice. By combining evidence from the literature with empirically grounded strategies developed across the research program, this paper advances more inclusive and feasible RCT methodology for research involving young people with intellectual disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70066","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324597","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}

{"title":"Pain Assessment in Adults and Children With Complex Disabilities and Unexplained Behavioral Changes: An Observational Study","authors":"Ciccone Ornella,&nbsp;Lepri Alessandro,&nbsp;Zaffini Olga,&nbsp;Camanni Guido,&nbsp;Brunozzi Giulia,&nbsp;Vallasciani Massimo,&nbsp;Baglioni Antonella,&nbsp;Tinarelli Chiara,&nbsp;Jenkner Alessandro,&nbsp;Salata Michele,&nbsp;Elisei Sandro","doi":"10.1111/jppi.70067","DOIUrl":"https://doi.org/10.1111/jppi.70067","url":null,"abstract":"<p>Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self-report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R-FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain-related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain-related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain-related events that might otherwise have been overlooked. The fact that the R-FLACC was found to be very useful for signaling a state of “discomfort,” while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324441","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}

{"title":"Pain Assessment in Adults and Children With Complex Disabilities and Unexplained Behavioral Changes: An Observational Study","authors":"Ciccone Ornella,&nbsp;Lepri Alessandro,&nbsp;Zaffini Olga,&nbsp;Camanni Guido,&nbsp;Brunozzi Giulia,&nbsp;Vallasciani Massimo,&nbsp;Baglioni Antonella,&nbsp;Tinarelli Chiara,&nbsp;Jenkner Alessandro,&nbsp;Salata Michele,&nbsp;Elisei Sandro","doi":"10.1111/jppi.70067","DOIUrl":"https://doi.org/10.1111/jppi.70067","url":null,"abstract":"<p>Pain assessment of people with intellectual disabilities (PWID) represents a complex clinical task that often results in underestimation and inadequate treatment. The Serafico Institute has undertaken research in children and young adults with intellectual disabilities (ID) associated with multiple sensory, physical, and psychobehavioral impairments to improve the ability to detect pain in this vulnerable population. Participants unable to pain self-report, presenting with unexplained behavioral changes, were assessed with the revised Face, Legs, Activity, Cry, Consolability (R-FLACC) scale by trained educational and health staff from February to July 2023. Data was compared to retrospective information collected from February to July 2022, before the training of educational and health personnel had been undertaken. Five hundred fifty events of unexplained behavioral changes were evaluated in 87 participants with ID. Among those, 202 were assessed as pain-related events, 345 were judged as distress events and three events were not clearly identified. The cause of pain was identified in 55% of events. Compared to the retrospective data, we could observe an increase in the detection of pain-related episodes and a reduction in events that, while not clearly rated, were still treated with analgesics or analgesics plus sedatives. The results of the study highlight that formal training of educational and health personnel, along with the use of a validated tool for pain assessment in PWID can lead to identifying pain-related events that might otherwise have been overlooked. The fact that the R-FLACC was found to be very useful for signaling a state of “discomfort,” while not being discriminatory regarding its nature and the cause of pain in this complex population, calls for new studies to identify a tool capable of more accurately discriminating the cause of the pain.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148324442","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}

{"title":"Economic Situation of Adults With Intellectual Disability Living in the Community: Evidence From the United Kingdom","authors":"Filip Sosenko","doi":"10.1111/jppi.70064","DOIUrl":"https://doi.org/10.1111/jppi.70064","url":null,"abstract":"<p>This study investigates the economic situation of adults with intellectual disabilities (ID) living in the community in the United Kingdom, utilizing data from the Family Resources Survey. The analysis covers 8 years of data (2012/13–2019/20) to provide a comprehensive overview of income, material hardship, and employment status among this population. Adults with ID are shown to experience heightened levels of poverty and material hardship compared to the general population and other groups with disabilities. The findings reveal that nearly a third of households with an adult with ID live below the official poverty line, and many struggle with essential needs, such as heating and food security. The study highlights the unique challenges faced by adults with ID, including low levels of paid employment and high costs associated with their condition, which are not adequately covered by disability benefits. The findings underscore the need for policy interventions to address the economic and social vulnerabilities of adults with ID. Suggestions include increasing the Personal Independence Payment for those with ID and considering economic support through a household-based lens to accommodate the needs of family members involved in caregiving.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148282127","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}

{"title":"Economic Situation of Adults With Intellectual Disability Living in the Community: Evidence From the United Kingdom","authors":"Filip Sosenko","doi":"10.1111/jppi.70064","DOIUrl":"https://doi.org/10.1111/jppi.70064","url":null,"abstract":"<p>This study investigates the economic situation of adults with intellectual disabilities (ID) living in the community in the United Kingdom, utilizing data from the Family Resources Survey. The analysis covers 8 years of data (2012/13–2019/20) to provide a comprehensive overview of income, material hardship, and employment status among this population. Adults with ID are shown to experience heightened levels of poverty and material hardship compared to the general population and other groups with disabilities. The findings reveal that nearly a third of households with an adult with ID live below the official poverty line, and many struggle with essential needs, such as heating and food security. The study highlights the unique challenges faced by adults with ID, including low levels of paid employment and high costs associated with their condition, which are not adequately covered by disability benefits. The findings underscore the need for policy interventions to address the economic and social vulnerabilities of adults with ID. Suggestions include increasing the Personal Independence Payment for those with ID and considering economic support through a household-based lens to accommodate the needs of family members involved in caregiving.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148282356","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}

{"title":"Exploring the Roles of Optimism and Social Support in the Emotions of Siblings of Individuals With Down Syndrome or Autism","authors":"Raaya Alon","doi":"10.1111/jppi.70065","DOIUrl":"https://doi.org/10.1111/jppi.70065","url":null,"abstract":"<div>\u0000 \u0000 <p>Siblings play a vital role in each other's lives. When one sibling has an intellectual or neurodevelopmental disability, this may influence the typically developing sibling's emotional responses and the quality of the siblings' current and future relationships. This study examined a predictive model of emotional responses, which were categorized as active negative, passive negative, and positive, among emerging adult siblings of individuals with Down syndrome or autism. The model assessed the influence of optimism, with perceived social support evaluated as a mediating variable. The data indicated that siblings who have a brother or sister with autism experienced significantly greater active and passive negative emotions than those with a brother or sister with Down syndrome, whereas the latter reported higher levels of positive emotions, optimism, and perceived social support. Gender differences emerged, with sisters of individuals with DS/autism expressing more positive emotions than brothers. Mediation analyzes revealed that perceived social support significantly mediated the relationship between optimism and both passive negative and positive emotions, but not between optimism and active negative emotions. These findings highlight the sometimes-challenging emotional responses by typically developing siblings, particularly those of individuals with autism, and highlight the protective role of perceived social support. The study emphasizes the importance of developing targeted interventions to support sibling well-being, especially among male siblings of individuals with autism.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148238044","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":"Exploring the Roles of Optimism and Social Support in the Emotions of Siblings of Individuals With Down Syndrome or Autism","authors":"Raaya Alon","doi":"10.1111/jppi.70065","DOIUrl":"https://doi.org/10.1111/jppi.70065","url":null,"abstract":"<div>\u0000 \u0000 <p>Siblings play a vital role in each other's lives. When one sibling has an intellectual or neurodevelopmental disability, this may influence the typically developing sibling's emotional responses and the quality of the siblings' current and future relationships. This study examined a predictive model of emotional responses, which were categorized as active negative, passive negative, and positive, among emerging adult siblings of individuals with Down syndrome or autism. The model assessed the influence of optimism, with perceived social support evaluated as a mediating variable. The data indicated that siblings who have a brother or sister with autism experienced significantly greater active and passive negative emotions than those with a brother or sister with Down syndrome, whereas the latter reported higher levels of positive emotions, optimism, and perceived social support. Gender differences emerged, with sisters of individuals with DS/autism expressing more positive emotions than brothers. Mediation analyzes revealed that perceived social support significantly mediated the relationship between optimism and both passive negative and positive emotions, but not between optimism and active negative emotions. These findings highlight the sometimes-challenging emotional responses by typically developing siblings, particularly those of individuals with autism, and highlight the protective role of perceived social support. The study emphasizes the importance of developing targeted interventions to support sibling well-being, especially among male siblings of individuals with autism.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2026-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148238046","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}