Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Attitudes Towards Medical Research Participation Among Those With Down Syndrome and Their Caregivers","authors":"Katherine A. Koenig,&nbsp;Lynn M. Bekris,&nbsp;Martha Sajatovic,&nbsp;James B. Leverenz","doi":"10.1111/jppi.70035","DOIUrl":"https://doi.org/10.1111/jppi.70035","url":null,"abstract":"<div>\u0000 \u0000 <p>In the United States, recent increases in funding and support for research related to Down syndrome have led to increased opportunities for research participation. It is critical to understand how individuals with Down syndrome and their carers view participation in research, as these individuals are major stakeholders in the research process. The goal of this study was to collect feedback regarding attitudes towards research directly from individuals with Down syndrome, as well as their caregivers. A cross-sectional online survey of individuals with Down syndrome and caregivers assessed attitudes toward research participation, including feedback regarding facilitators and barriers to participation, willingness to participate in specific procedures, and how the research process might best serve participants. Respondents included 46 persons with Down syndrome (age 16–61 years; 48% male, 52% female) and 216 caregivers (age 29–88 years; 9% male, 91% female). The potential to improve the lives of people with Down syndrome emerged as a strong incentive for research participation among both caregivers (96%) and respondents with Down syndrome (82%). Compared to caregivers, respondents with Down syndrome were more open to participating in research that included the risk of pain or the need to do something difficult. Compared to respondents with Down syndrome, caregivers responded more positively to being able to stay with the focus person during research procedures. Response patterns showed few relationships to age, sex, or previous research participation. The responses of people with Down syndrome and caregivers showed some similarities, with notable differences highlighting the importance of respecting the autonomy of the participant. Specific recommendations related to the research process include the need to give participants understandable, thorough information related to research procedures and the importance of consistent communication.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145845950","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":"Diagnostic Paper-Pencil Instruments for Dementia in People With Intellectual Disability: Scoping Literature Review","authors":"Sanja Zgonec,&nbsp;Bruno Giordani,&nbsp;Voyko Kavcic","doi":"10.1111/jppi.70033","DOIUrl":"https://doi.org/10.1111/jppi.70033","url":null,"abstract":"<div>\u0000 \u0000 <p>Life expectancy is increasing both in the general population and the population of people with intellectual disabilities. As they age, they also face age-related problems, including dementia. In this population, the diagnosis of dementia can be difficult, and therefore it's necessary to adapt existing or develop new instruments. Our identified research question was: “Which instruments for diagnosing dementia in people with intellectual disabilities have been described and what are their usefulness and interoperability?” We used three databases for searching the literature (Web of Science, Pubmed, and Scopus), identified and selected relevant studies, and analyzed the chosen articles in detail. We provided a review of existing instruments for diagnosing dementia in people with intellectual disabilities. We defined 24 various instruments for diagnosing dementia among people with intellectual disabilities. The most common are CAMDEX-DS, CLD, and DSQIID; the newest of all analyzed instruments is WDTIM. There are several existing diagnostic instruments for dementia in people with intellectual disabilities, but established research suggests that not all resulting evaluations necessarily agree with each other.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145845941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The International Association for the Scientific Study of Intellectual and Developmental Disabilities Opposes the Human Cost From Military Conflict: A Position Statement","authors":"Dana Roth,&nbsp;David Treanor,&nbsp;Tamar Heller,&nbsp;Ivan Brown,&nbsp;Peter E. Langdon","doi":"10.1111/jppi.70027","DOIUrl":"https://doi.org/10.1111/jppi.70027","url":null,"abstract":"<p>The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, carers, and self-advocates that actively promotes worldwide research and information exchange about intellectual and developmental disabilities. IASSIDD does not speak to the legitimacy or legality of any ongoing war or armed conflict. The purpose of this article is to promote respect for the human dignity of all persons with intellectual and other developmental disabilities, and their families, who find themselves in such situations. Therefore, the aim of this article is to outline the impact that military conflict has upon people with developmental disabilities, and their families, and to introduce the IASSIDD position statement that opposes the human cost from military conflict. During military conflict, many children and adults with intellectual and other developmental disabilities, and their families, experience marked suffering and maltreatment. This occurs due to an inability to access healthcare, education, and rehabilitation, and is also due to serious physical injuries, starvation, psychological trauma, and of course death, caused directly by conflict. This group is disproportionately affected due to preexisting vulnerabilities, and they are likely to experience human rights violations. Challenging behaviour is likely to increase, and quality of life decrease, during conflict. Addressing need during conflict requires a multifaceted approach that includes humanitarian aid, psychological support, social support, rehabilitation services, caregiver support, and coordinated international efforts and advocacy. There has been too little research about the experiences of people with intellectual and other developmental disabilities, and their families, during military conflict. We know little about the number of refugees with intellectual and other developmental disabilities fleeing, nor do we have robust data about the number of people with intellectual and developmental disabilities who die, during military conflict. The basic human rights of people with intellectual and other developmental disabilities, and their families, are violated during military conflict; this is contrary to the United Nations Security Council Resolution 2475 as these rights are enshrined in the United Nations <i>Convention on the Rights of Persons with Disabilities</i> and the United Nations Millennium Goals.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145686428","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":"Receiving Positive Behaviour Support: The Experiences of People With Intellectual Disability, Their Family, and Staff Members","authors":"Olivia Hewitt,&nbsp;Jon Codd,&nbsp;Peter E. Langdon","doi":"10.1111/jppi.70032","DOIUrl":"https://doi.org/10.1111/jppi.70032","url":null,"abstract":"<p>Positive behaviour support is an evidence-based framework for people displaying behaviours that challenge, which is widely used within the United Kingdom. Few studies have investigated the experiences of people with intellectual disability, their family members, and paid staff members who receive positive behaviour support-based interventions from intensive support teams. Individual, semi-structured interviews were conducted with 10 adults with intellectual disability, 10 family members and 10 paid staff members who received an intervention based on a Positive Behaviour Support framework from an intensive support team in England. Participants were aged 18–74 years. Semi-structured interviews took place within 4 months of discharge from the service. They were recorded and transcribed. Data was analysed using an Inductive/Deductive Hybrid approach. Initially inductive data analysis was conducted using Thematic Analysis. Subsequent deductive analysis mapped themes onto an existing framework of Positive Behaviour Support. Four overarching themes were created from the data, ‘Developing a therapeutic working relationship’, ‘Access to resources’, ‘Building knowledge, skills and confidence in the present’, and ‘Instilling hope and resilience for the future’. Results were compared with the Positive Behaviour Support framework and areas of convergence and discrepancy were identified. Gathering multi-perspectival data was a strength of this study. Results from interviews largely mapped onto key components of a Positive Behaviour Support framework. Some additional relational factors were identified around developing therapeutic relationships across the system and the importance of instilling hope for change and the future. These factors may have implications for theoretical mechanisms of change and be helpful for clinicians to consider in their practise.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70032","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145626107","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":"Barriers to Overcome When Including Participants With Intellectual Developmental Disorders in Judo Classes","authors":"Gaston Descamps,&nbsp;Alain Guy Marie Massart,&nbsp;Terry Rizzo,&nbsp;Maria João Campos","doi":"10.1111/jppi.70029","DOIUrl":"https://doi.org/10.1111/jppi.70029","url":null,"abstract":"<p>This study explores the positive and negative control beliefs of judo teachers toward the inclusion of participants with Intellectual Developmental Disorders (IDDs) in judo classes, employing a qualitative approach to examine the factors influencing these beliefs. Given the global push for inclusivity in sports and physical education as vehicles for inclusion and personal development, understanding these control beliefs is crucial for developing effective inclusive practices. This study engaged 21 judo teachers from Slovenia, Portugal, and France/French Polynesia through structured qualitative interviews focusing on behavioral, control and normative beliefs, based on the Theory of Planned Behavior. The results reveal that positive factors facilitating inclusion comprise additional human assistance, smaller group sizes, specific education and experience in handling disabilities, informed awareness about the participant's condition, and supportive group dynamics. The study also highlights the impact of these factors on teachers' perceived ability to effectively include participants with IDD. The findings suggest that successful inclusion in judo for participants with IDD requires not only physical adjustments and support but also significant attitudinal shifts and educational enhancements among instructors. These insights can contribute to the broader field of inclusive education within physical education and sports, encouraging more targeted training and policy frameworks to promote inclusivity.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70029","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145619068","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 Across Continents: Insights Into the Physical Health of Older Adults With Intellectual Disability From Ireland and Australia","authors":"Darren J. Fitzpatrick,&nbsp;Eilish Burke,&nbsp;Rafat Hussain,&nbsp;Stuart Wark,&nbsp;Martin McMahon","doi":"10.1111/jppi.70028","DOIUrl":"https://doi.org/10.1111/jppi.70028","url":null,"abstract":"<p>Chronic conditions and multimorbidity are prevalent in older people with intellectual disability. International comparisons of disease prevalence may reflect the heterogeneity of healthcare policy internationally and the distinct social histories of different countries. This study sought to determine if differences in patterns of disease prevalence in Ireland and Australia could elucidate effective and deficient aspects of policy and practice in each country. Data from existing and independent national studies in Ireland and Australia were matched on demography and diagnoses. The prevalences of 9 chronic conditions and multimorbidity across and within both jurisdictions were compared. <i>p</i> values were corrected for multiple hypothesis testing. Thyroid disorder, epilepsy and hypertension were more prevalent in Ireland. Arthritis was more prevalent in Australia. In Australia, arthritis, asthma, and thyroid disorder were more common in females. In Ireland, diabetes prevalence was more prevalent in females (11.9 times more likely than in males). The Irish population was 2.7 times more likely to be multimorbid compared to their Australian counterparts. In both countries, females were 2.6 times more likely to be multimorbid than males. The findings of this study offer unique insights into identifying and tracking multimorbidity and serve as a foundation for developing strategies to improve healthcare outcomes for this population. Differences such as increased prevalence rates of hypertension, epilepsy, and thyroid conditions were observed in the Irish cohort. Differences in multimorbidity trends and sex-stratified disease burden, emphasize the need for further investigation into the environmental, diagnostic, and systemic factors that influence outcomes. These findings highlight the differences in disease prevalence and multimorbidity between Ireland and Australia. There is a critical need for improved data harmonization and targeted interventions to address inequalities particularly sex-stratified diseases which disproportionately affect women with intellectual disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70028","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145619067","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 Experience of Paid Carers of People With Intellectual Disability in Long Term Residential Institutions: A Qualitative Study","authors":"Paulina S. Arango,&nbsp;Jacinta Vélez,&nbsp;Johanna Sagner-Tapia,&nbsp;Angela Hassiotis","doi":"10.1111/jppi.70030","DOIUrl":"https://doi.org/10.1111/jppi.70030","url":null,"abstract":"<div>\u0000 \u0000 <p>A global movement towards deinstitutionalization has driven changes in housing opportunities for individuals with intellectual disability around the world. Research about these changes has highlighted the significant role of paid caregivers and the importance of community-based care. We present a qualitative study aimed at describing the experiences of paid caregivers for individuals with intellectual disabilities in long-term residential institutions in Santiago, Chile. Through interviews with 15 caregivers from various institutions, we examined their motivations, challenges, and impacts of caregiving on their personal lives. Thematic Analysis was used to analyze the interviews. Four key themes were identified: (1) knowledge about intellectual disability and the persons cared for, (2) nature of the relationship with the people they assist, (3) professional caregiving roles, and (4) the personal impact of caregiving. Findings highlight the limited training of caregivers in intellectual disability, the physical and emotional burdens they face, and their crucial role in promoting residents' autonomy and community inclusion. The study highlights the need for professional recognition and support to improve the quality of care and ensure the social inclusion of individuals with intellectual disability aligned with the global deinstitutionalization movement.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145626467","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":"Long-Stay Dementia Care: Dutch Inventory and Comparison of Psychosocial Support Methods for People With Intellectual Disabilities and Dementia","authors":"Aurora M. Ulgiati,&nbsp;Irene IJpma,&nbsp;Alain D. Dekker","doi":"10.1111/jppi.70031","DOIUrl":"https://doi.org/10.1111/jppi.70031","url":null,"abstract":"<p>Psychosocial support methods (PSMs) address social, health and psychological challenges faced by people with intellectual disabilities and their caregivers in long-term dementia care. However, care organisations struggle with choosing appropriate PSMs due to insufficient evidence, inconsistent findings, and a lack of a comprehensive overview of PSMs for people with intellectual disabilities and dementia. This study aimed to provide a detailed inventory of available PSMs in Dutch and compare their effectiveness in daily practice. The study explored two key questions: (1) Which PSMs are available for specialised residential facilities? and (2) What are the core elements and characteristics of these PSMs, particularly in terms of effectiveness and feasibility? A standardised definition of PSM was developed to ensure consistency in terminology and meaningful comparisons. Through a systematic search of academic databases (EBSCO, Scopus and PubMed) and Dutch grey literature, 28 PSMs were identified. For each PSM, a comprehensive literature study was conducted to gather all available references describing its content, feasibility, and scientific foundations. Three PSMs, that is dementia care mapping (DCM), integrated emotion-oriented care (IEOC) and Urlings–Van der Linden, specifically address people with intellectual disabilities and dementia. While all PSMs emphasise personalised care, long-term evidence for their effectiveness remains limited. So far, effectiveness has only been studied for DCM. This study provides a first and preliminary synthesis of the available knowledge on PSMs for individuals with intellectual disabilities and dementia. Among the three PSMs found, the most indications for effectiveness are currently reported for DCM. These results may aid care organisations in their choice for a promising PSM to enhance quality of care and, indirectly, quality of life of people with intellectual disabilities and dementia.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70031","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145626084","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":"Using Expert Voices to Determine the Key Components of Positive Behaviour Support for the Development of a National Professional Development and Training Curriculum","authors":"Keith McVilly,&nbsp;Julia R. Hall,&nbsp;Brent Hayward,&nbsp;Mirko Uljarevic,&nbsp;Lisa McKay-Brown,&nbsp;Jeffrey Chan","doi":"10.1111/jppi.70025","DOIUrl":"https://doi.org/10.1111/jppi.70025","url":null,"abstract":"<p>Positive behaviour support (PBS) is a widely adopted model in education and disability services for improving service provision and service user outcomes. However, there is a paucity of guidance to support the formulation and delivery of professional development in PBS across different contexts, including accredited programmes and in-service training. Thus, this study aimed to address this important gap by developing consensus for the core components of effective professional development and training in PBS, who it is that should receive what training, and how such training might be delivered. A modified Delphi methodology was employed, with an exploration phase (i.e., a narrative review of published literature and an audit of various training courses) and an evaluation phase (i.e., a two-round online Delphi). Delphi panellists identified core areas of capability with corresponding key competencies for PBS professional development and training. Specific areas in which various stakeholders would benefit most in training were identified. Panellists described a tiered approach to delivering training, from foundation knowledge to more complex skills. Combined, existing literature and course audits, established PBS practice frameworks and expert consensus provide evidence to inform curriculum to deliver professional development and training in PBS for governments and training providers as a step towards formal accreditation of PBS training.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70025","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145581145","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":"Inclusive Research: Reflections on Co-Producing Autism Educational Research","authors":"Beth Saggers,&nbsp;Gilly McKeown,&nbsp;Suzanne Carrington,&nbsp;Sofia Mavropoulou","doi":"10.1111/jppi.70026","DOIUrl":"https://doi.org/10.1111/jppi.70026","url":null,"abstract":"<div>\u0000 \u0000 <p>Critical to strengthening educational policy, research, and practice is meaningful engagement through co-produced research that seeks autistic and autism community perspectives. Co-production ensures autistic voices are engaged as experts, valuing their depth of experiential knowledge, relevance, practicality and experience to the research team that maximises research success, relevance and knowledge translation. Co-produced educational research with and for the autistic community increases the likelihood of success in schools for autistic learners. This paper reflects on the experiences of one research team in developing a co-produced research project commissioned by Autism CRC that investigated barriers and enablers to autistic learners' success in Australian schools. This project involved conceptualisation, consultation, collaboration and co-production of educational research with the autistic and autism community. The project involved co-production with seven autistic consultants, five autism community partners and two autistic research assistants across the life of the project. Central to the project was ensuring that all research elements were informed by the autistic and autism communities with their contributions not just being acknowledged but deeply valued and appreciated, as they participated from conception to research outputs. Co-produced reflections will consider key themes related to co-production, collaboration, communication, and authenticity, discussing lessons learned and providing recommendations for ensuring the quality and authenticity of future co-produced autism educational research.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 4","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145581146","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}