Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Physicians’ Readiness to Treat Children With Autism Spectrum Disorders: A Focus on Orthopedics and Ophthalmology","authors":"Dina Mostovoy,&nbsp;Merav Ben Natan,&nbsp;Rawan Masarwa,&nbsp;Yaniv Yonai,&nbsp;Yaron Berkovich","doi":"10.1111/jppi.70023","DOIUrl":"https://doi.org/10.1111/jppi.70023","url":null,"abstract":"<p>Little is known about knowledge and confidence to treat children with autism spectrum disorder (ASD) among physicians working in specific medical fields, such as orthopedics and ophthalmology. Understanding the perspectives and preparedness of professionals in these specialties is crucial for improving the quality of care provided to this population. The objective of this study was to compare the ASD knowledge level, perception of difficulties, and readiness to treat children with ASD between physicians in orthopedics and ophthalmology. A quantitative correlational survey methodology was employed. Participants included 202 physicians, with 94 from orthopedics and 108 from ophthalmology. Participants completed a questionnaire based on the “Knowledge about Childhood Autism among Health Workers” survey. Statistical analyses, including correlation and linear regression, were conducted to examine the relationships between variables. Orthopedic physicians exhibited lower ASD knowledge, reported more difficulties, and displayed lower readiness compared to their ophthalmologic counterparts. Handling aggression/destructive behaviors posed a greater challenge for orthopedic professionals, who also treated fewer children with ASD over the past year. Working in ophthalmology emerged as a strong predictor of readiness to treat ASD. Notably, a minority in both groups reported having received ASD-specific training. The study underscores the importance of ASD-specific training for physicians in orthopedics and ophthalmology, emphasizing the need for tailored training programs in distinct medical fields to optimize knowledge and skills for providing effective care to children with ASD.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70023","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145197160","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":"Impact of the COVID-19 Pandemic on Service Experiences of Individuals With Intellectual Disability in Sweden: Differences Between Men and Women","authors":"Lisa Palmqvist,&nbsp;Henrik Danielsson,&nbsp;Pia Käcker,&nbsp;Kristin Alfredsson Ågren","doi":"10.1111/jppi.70020","DOIUrl":"https://doi.org/10.1111/jppi.70020","url":null,"abstract":"<p>This study explores the impact of the COVID-19 pandemic on service experiences of individuals with intellectual disability in Sweden, with a focus on differences between men and women. Using large-scale self-reported survey data from the National User Survey (2017–2022), changes in satisfaction with social services, including daily activity services, group homes and service homes, were analysed. Overall, satisfaction levels remained high, with notable variations between service types and differences between men and women. Satisfaction with daily activity services was reported with a higher score during the pandemic for both men and women, whereas no significant changes were observed for group homes, and satisfaction with service homes was reported with slightly lower scores. Across all service types and questions, men consistently reported a higher satisfaction than women. Women did not report a higher satisfaction than men in any instance, and disparities were particularly evident in aspects related to decision-making and feelings of safety. The findings highlight the pandemic's differential impact on service experiences for men and women with intellectual disability, underlining the importance of addressing sex disparities in service provision. These results have implications for policy and practice, particularly in designing more inclusive and equitable support systems that involve individuals with intellectual disability in decision-making processes and respond to their unique needs during health crises.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70020","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144998907","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":"Direct Staff's Experiences in Recognizing and Managing Psychiatric Symptoms in People With Intellectual Disabilities and Behaviour of Concern in Supported Accommodations","authors":"Catrin Johansson,&nbsp;Helena Antonsson","doi":"10.1111/jppi.70021","DOIUrl":"https://doi.org/10.1111/jppi.70021","url":null,"abstract":"<p>The aim of this study is to explore the experiences of direct staff in managing psychiatric symptoms in people with intellectual disabilities and behaviors of concern in supported accommodation. The study has a quantitative, cross-sectional design using a questionnaire. Data were collected from 197 direct staff members working in supported community-based accommodation using an adapted version of the Checklist of Challenging Behaviour (CCB). The results show that staff experienced slight or moderate difficulty in managing psychiatric symptoms. The ratings were 38% for anxiety, 37% for compulsive behavior, 31% for manic behavior, and 49% for depressive symptoms. Direct staff members in supported accommodation face challenges in managing psychiatric symptoms and require educational training to improve their knowledge and skills. One viable option would be to implement web-based training programs. Further research and evaluation are imperative to improve access to mental health care for individuals with intellectual disabilities.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-09-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70021","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144935260","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 Shared Citizenship Paradigm and Its Measurement","authors":"Claudia Claes,&nbsp;Robert L. Schalock,&nbsp;Geert Van Hove","doi":"10.1111/jppi.70017","DOIUrl":"https://doi.org/10.1111/jppi.70017","url":null,"abstract":"<div>\u0000 \u0000 <p>This article focuses on the Shared Citizenship Paradigm that incorporates a contemporary set of values and beliefs about people with intellectual and developmental disabilities and their right to participate fully in all aspects of life and society. The article provides an overview of the paradigm, describes the parameters of a shared citizenship measurement model, and discusses potential uses of shared citizenship measurement data. These uses involve guiding services and supports, providing formative feedback to individuals, organizations, and systems, and framing research opportunities and practices.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144767513","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":"Providers' Perspectives on Resources Needed for Disseminating and Implementing Evidence-Based Practices for Autism: A Qualitative Study","authors":"Jennica Li,&nbsp;Yue Yu,&nbsp;Melina Melgarejo,&nbsp;Patricia L. Schetter,&nbsp;Jessica Suhrheinrich,&nbsp;Aubyn Stahmer","doi":"10.1111/jppi.70019","DOIUrl":"https://doi.org/10.1111/jppi.70019","url":null,"abstract":"<p>Effective dissemination and implementation of evidence-based practices (EBPs) for autism have proven challenging. The California Autism Professional Training and Information Network (CAPTAIN) is a statewide initiative designed to build capacity for autism EBPs within community service agencies. The present study aimed to examine resources requested by CAPTAIN members to support their dissemination and implementation efforts in order to inform future implementation research and practice. In an annual survey, CAPTAIN members identified resources needed for their dissemination and implementation work. Using the template analysis method, we analyzed written responses. Overarching themes included members wanting more: ready-made resources for training and coaching, inclusive resources, effective methods of obtaining and sharing resources, opportunities to connect and learn from other members, empirical information about EBPs, and opportunities for professional development and support. Providers with direct experience offer useful perspectives as members of the EBP dissemination and implementation delivery system that can be valuable to both the translation and support systems and can inform implementation science more broadly.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70019","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144716940","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":"Celebrating Plurality: How to Embed Inclusive Research Structurally and Meaningfully in Research Practice Related to People With Profound Intellectual and Multiple Disabilities","authors":"Wietske Verhagen,&nbsp;Annet ten Brug,&nbsp;Aly Waninge,&nbsp;Annette van der Putten","doi":"10.1111/jppi.70018","DOIUrl":"https://doi.org/10.1111/jppi.70018","url":null,"abstract":"<div>\u0000 \u0000 <p>In the last decades, developments concerning “inclusive research” gave rise to a growing valuation of and need for the participation of people with experiential expertise in research practices. Knowledge related to inclusive research on people with profound intellectual and multiple disabilities (PIMD) is scarce. The aim of this study is to (1) explore how inclusive research can be structurally and meaningfully embedded in the research practice related to people with PIMD by including the experiential expertise of different stakeholders and (2) start an ongoing dialogue on this topic. Responsive evaluation, a qualitative, participatory research approach, served as the methodological frame for this study. Insight into practical and ethical questions concerning the inclusion of people with experiential expertise in research practices related to people with PIMD was obtained by a brief literature review and exploratory interviews with seven stakeholders. Additionally, six in-depth interviews with various stakeholders explored the possible answers to these questions. Finally, a focus group consisting of seven stakeholders discussed insights that lacked consensus and sparked discussion. The results were arranged in four topics: “what”: defining the used concepts; “why”: the utility and aim of the involvement of stakeholders; “who”: competences needed to participate in research; and “how”: the way participation could be organized within the research practices related to people with PIMD. There is no “one size fits all” solution of embedding inclusive research in research practices related to people with PIMD. In order to be fruitful and meaningful for everyone involved, the context and the various perspectives of all stakeholders within a research project should be taken into account. Making room for plurality, changeability, and an ongoing dialogue between all involved is hereby essential.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144681099","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":"“Navigating Social Security Employment Supports: The Experiences of Young Adults With Intellectual Disabilities Who Want to Work”","authors":"Cristina C. Parsons,&nbsp;Andrew C. Persch","doi":"10.1111/jppi.70015","DOIUrl":"https://doi.org/10.1111/jppi.70015","url":null,"abstract":"<p>The number of youth and young adults with intellectual disabilities requiring social security assistance is growing rapidly, but utilization of available employment support programming (i.e., work incentives) is not. There is a paucity of research examining why young adult beneficiaries are not accessing available employment supports. This study seeks to answer the research questions: (1) “How do young adults with intellectual disabilities become aware of, and receive accurate information about employment support programs for which they are potentially eligible?”; (2) “What barriers have young adults with intellectual disabilities encountered to accessing appropriate employment support programs?”; and (3) “How does the complexity of employment support programs affect the willingness of young adults with intellectual disabilities to work?” We explore these questions with phenomenological research methods to understand the lived experience of young adults with intellectual disabilities and their families in the United States, while drawing parallels to similar systems in other countries. We found the most common way families became aware of employment support programming was informally through other parents. Young adults relied heavily on their parents to coordinate employment support program requirements, but parents were confused by program complexity and frustrated with available communication processes. Young adults were undeterred in their work trajectories but reported backtracking in other important areas of independent living skills like budgeting and paying rent.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70015","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144635444","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":"Ageing With Intellectual Disabilities and Complex Age-Related Conditions in Ireland: In Search of a Model of Care","authors":"Fintan Sheerin,&nbsp;Maureen D'Eath,&nbsp;Sandra Fleming,&nbsp;Amara Naseer,&nbsp;Mary McCarron,&nbsp;Philip McCallion","doi":"10.1111/jppi.70016","DOIUrl":"https://doi.org/10.1111/jppi.70016","url":null,"abstract":"<p>Improvements in health care and supports for people with intellectual disabilities have resulted in greater longevity, with more people living into older age. This is a positive development, but it has seen the occurrence of age-related issues that were theretofore quite rare in this population. It has become clear that some of these issues present a level of complexity, requiring a coordinated, timely, and individualized response. That response has been challenging for intellectual disability services in Ireland, where there has been no clear model of care for older people with intellectual disabilities with complex age-related health needs. The authors, having undertaken a review of the literature to identify extant models and finding none, seek in this paper to bring together key concepts and aspects to propose a model of care to support older people with intellectual disabilities as their needs become more complex.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70016","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144582235","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":"Meaning-Making Experiences of Family Caregivers Caring for a Member With Intellectual Disability and Challenging Behaviour","authors":"Alice Nga Lai Kwong,&nbsp;Lisa Pau Le Low","doi":"10.1111/jppi.70014","DOIUrl":"https://doi.org/10.1111/jppi.70014","url":null,"abstract":"<p>With the substantial burden faced by family members of adults with intellectual disability (ID) and challenging behaviour (CB), literature has shown that caregivers who have successfully found meaning in their caregiver role are more likely to cope well with the difficulties they face. This study aimed to examine how family caregivers described and made meaning of caring for an adult family member with ID and CB at home. This study included 37 caregivers (parents and siblings) who were living and caring for their adult family member with ID and CB. Individual in-depth interviews were conducted, and deductive thematic analysis was employed. Three themes emerged: (1) the reality of caregiving, (2) the importance of support networks, and (3) reappraisals of the caregiving role. In the process of meaning making, family caregivers appraised the reality of their caregiving situation as a life of feeling restricted and losing control, resulting in negative psychological consequences. They were aware of the demands of caregiving but were able to describe a range of support from families, peers, and professionals and services to maintain their caregiving roles. Reappraising caregiving enabled them to identify positive aspects of caregiving by reviewing their personal life philosophies and assigning new meanings to the caregiving situations. Family caregivers of adults with ID and CB spoke about the ways in which they coped and managed CB and provided ‘tips’ for other families that highlighted a strength-based caregiving research model and focused on ways to negotiate and adapt to the incessant challenges of caregiving. Meaning-focused interventions for family caregivers of people with ID which aim at promoting positive appraisal will enable them to not only focus on downplaying the negative aspects of caregiving but optimising the positive caregiving experiences.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 3","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70014","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144482217","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":"Quality of Life as a Paradigm With Multiple Applications in the Field of Intellectual and Developmental Disabilities","authors":"Ivan Brown,&nbsp;Roy I. Brown,&nbsp;Meaghan Edwards,&nbsp;Alice Schippers","doi":"10.1111/jppi.70013","DOIUrl":"https://doi.org/10.1111/jppi.70013","url":null,"abstract":"<div>\u0000 \u0000 <p>This paper sets out an argument for conceptualizing quality of life as a useful paradigm in the field of intellectual and developmental disabilities. In doing so, it addresses the core elements of a paradigm as it is generally understood in scientific circles. The ideological and theoretical roots of quality of life are centered around core values, are closely connected to social constructs that have developed over time, are currently widely accepted in our field, and are supported by numerous laws, policies, and conventions. The meaning of quality of life as a paradigm is explained. One core premise of a paradigm is that its ideological and theoretical base should be usefully applied in current social contexts. This paper argues that the overall objective of improving quality of life for people living in their own contexts may be pursued through numerous application frameworks, each of which may have numerous specific application strategies that are best suited to the specific “quality” objectives being sought within specific contexts. For this reason, exemplary application frameworks and more specific application strategies are presented, and a case is made for ensuring that their outcomes are both achievable and positive. This, then, constitutes a new and broader understanding of quality of life as more than a useful social construct or a system of measurement, but rather as the overall thrust behind everything we do in our field and that may be realized in multiple ways. A summary figure is provided.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144482096","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}