Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Cancer Diagnosis and Cancer-Related Mortality in Adults With Intellectual Disability: Evidence From Two Irish Cohort Studies","authors":"Martin McMahon,&nbsp;Mark Ward,&nbsp;Alyson Mahar,&nbsp;Shauna Walsh,&nbsp;Maeve Lowry,&nbsp;Caitriona Ryan,&nbsp;Andrew Wormald,&nbsp;Roman Romero-Ortuno,&nbsp;Audrey O'Halloran,&nbsp;Mary McCarron,&nbsp;Philip McCallion,&nbsp;Eilish Burke,&nbsp;Louise Lynch","doi":"10.1111/jppi.70079","DOIUrl":"https://doi.org/10.1111/jppi.70079","url":null,"abstract":"<p>Cancer is a major public health concern and is now the leading cause of death in many countries. Despite this, little is known about cancer in underserved groups, particularly adults with intellectual disability. The aim of this study was to explore cancer diagnosis and mortality from cancer in adults with intellectual disability and those who are ageing in the general population, and adults with a physical disability. We analysed five waves of longitudinal data from IDS-TILDA and TILDA, two Irish longitudinal studies. Two TILDA cohorts (adults aged ≥ 65 years and adults with physical disability) were used as contextual reference points to aid the interpretation of findings. Cancer deaths for those with intellectual disability were identified from death certificates across the study period. Self-reported cancer prevalence in IDS-TILDA was 4%–8% across Waves 1–3. This was 15.5%–17.5% in the two TILDA cohorts. Among 241 deaths in IDS-TILDA, 38 people with intellectual disability had cancer recorded on death certificates although 26 (68%) had never self-reported cancer. Overall, adults with intellectual disability reported low cancer prevalence and incidence across five waves of longitudinal data. A gap exists in terms of the proportion of cancer deaths among people in this group who never reported having a cancer diagnosis at any point across the wave. While data limitations mean this cannot be interpreted as direct evidence of under-diagnosis, the finding raises important questions about cancer recognition, reporting and diagnostic pathways for adults with intellectual disability. Overall, the findings suggest that there appears to be systemic gaps in cancer detection, and there is a need for improved policy and diagnostic pathways for this population.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 4","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70079","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149099383","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":"Concordance and Discrepancy: Family Member Perspectives on Caregiving and Future Planning for Individuals With Intellectual and Developmental Disabilities in Taiwan","authors":"Chun-Yu Chiu,&nbsp;Chun Eun Lee,&nbsp;Meghan Burke","doi":"10.1111/jppi.70075","DOIUrl":"https://doi.org/10.1111/jppi.70075","url":null,"abstract":"<div>\u0000 \u0000 <p>Sibling involvement in caregiving for adults with intellectual and developmental disabilities (IDD) is increasingly important, yet research often overlooks their role, especially in Asian families. This study explores the perspectives of siblings, parents, and adults with IDD in Taiwan regarding caregiving tasks and future planning. In this paper, the research team focused on the first phase of a sequential explanatory mixed-methods design study, in which we surveyed 334 participants to examine differences in perspectives toward sibling involvement in caregiving and future planning. Results indicated that family members perceived siblings engaged in various caregiving tasks sporadically. While family duty is acknowledged across groups, siblings, parents, and adults with IDD showed different views on the reasons for siblings to engage in caregiving responsibilities. Future planning activities were generally lacking, with insufficient information being a significant barrier. This study highlights the importance of considering diverse family perspectives in caregiving and future planning for adults with IDD, which has important implications for developing family-centered interventions and policies within cultural contexts to promote effective caregiving and ensure family quality of life.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 4","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-10-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149099380","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":"Parental Perspectives on the Transition to Employment for Children With Intellectual Disabilities: A Systematic Review","authors":"Sardohan Yildirim A. Emel,&nbsp;Çankaya Muhammed Ali","doi":"10.1111/jppi.70080","DOIUrl":"https://doi.org/10.1111/jppi.70080","url":null,"abstract":"<div>\u0000 \u0000 <p>Studies examining parental perceptions during the post-school transition to life and employment for individuals with intellectual disabilities suggest that parents substantially influence transition planning and employment outcomes. In this study, a systematic literature review was conducted according to the PRISMA guidelines. The search terms (a) child, (b) adolescent, (c) student, (d) intellectual disability, (e) developmental disability, (f) cognitive impairment, (g) special needs, (h) vocational education, (i) vocational training, (j) employment, (k) transition, (l) parent, (m) caregiver, and (n) family were used and combined with Boolean operators in the ProQuest, Web of Science, and EBSCO databases. A total of 972 records were identified; after removing duplicates and studies not in English, 937 articles were screened by title and abstract, and 18 studies were evaluated for their eligibility. Ultimately, eight studies met all the inclusion criteria and were included in the review. The findings reveal that parents' expectations, concerns, and experiences substantially influence their children's transition to employment, and that current transition planning and employment systems are inadequate in meeting these expectations. In addition, structured programs positively affect parental perceptions, and social networks play a critical role in employment opportunities. The results underline the importance of more active family involvement in transition processes, consideration of the cultural context, and development of sustainable support mechanisms.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 4","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149099868","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":"An Audit of Research Funding for Intellectual Disability Health in Australia","authors":"Andrea Kargodorian,&nbsp;Rebecca Christidis,&nbsp;Jenny Downs,&nbsp;Mary-Ann O’Donovan,&nbsp;Preeyaporn Srasuebkul,&nbsp;Helen Leonard,&nbsp;Julian N. Trollor","doi":"10.1111/jppi.70076","DOIUrl":"https://doi.org/10.1111/jppi.70076","url":null,"abstract":"<p>People with intellectual disability in Australia experience significant and partly preventable health inequities and premature mortality. Health and medical research is a key mechanism for identifying, addressing and preventing health inequities through evidence-informed clinical care, services and policy. However, it is not known if Australia's research investment aligns with these needs. We conducted a national audit of Australian health research grants that primarily focused on intellectual disability and commenced between 2019 and 2024. Grant abstracts were identified through the Dimensions database and supplementary searches of funder websites. Each grant abstract was coded to the Health Research Classification System (HRCS) health categories and research activity types. Thirty-three grant abstracts, totalling AU$20.3 million, met the inclusion criteria, with mean funding of approximately AU$615 000 per grant. Most funding was provided by government sources, with the National Health and Medical Research Council contributing 69.5% of total funding, and the Medical Research Future Fund 26.5%. By health category, most funding was awarded to grants coded to general health (58.5%) and congenital disorders research (25.8%). By research activity type, most funding was awarded to grants coded to research on health and support services (32%) and finding and diagnosing illnesses (25%). Australian investment in intellectual disability health research remains limited. Greater strategic alignment between research funding and population health needs is required to support equitable health outcomes for people with intellectual disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70076","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149047969","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":"How Can I Tell if a Behaviour Support Plan Is Good? The Perspectives, Opinions and Experiences of Australian Disability Support Workers","authors":"Karen Nankervis,&nbsp;Maria Vassos,&nbsp;Michelle King,&nbsp;Jo Kelly,&nbsp;Trent Carberry","doi":"10.1111/jppi.70078","DOIUrl":"https://doi.org/10.1111/jppi.70078","url":null,"abstract":"<p>Positive behaviour support, which includes the development of a positive behaviour support plan (PBSP), is an effective intervention approach for people with intellectual and developmental disabilities who exhibit challenging behaviour. This study sought the perspectives of frontline disability support workers (DSWs) about what constitutes quality PBSPs. Thirty-nine DSWs participated in six focus groups, where they ranked and discussed the important characteristics of good quality PBSPs. The need for PBSPs to be easy to read was ranked as the most important PBSP quality indicator. The DSWs emphasised the relationship between PBSP implementation and the accessibility and practicality of the PBSP and wanting greater involvement in PBSP development and implementation processes. Given that DSWs are one of the stakeholders most likely to be implementing PBSPs to facilitate positive behaviour change, contemporary understanding of PBSP quality needs to include aspects such as accessibility and practicality as quality markers.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70078","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148994494","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":"Organisational Contexts to Prevent and Address Everyday Harm Between People With Cognitive Disability and Support Workers","authors":"Raffaella Cresciani,&nbsp;Karen R. Fisher,&nbsp;Sally Robinson,&nbsp;Heikki Ikäheimo,&nbsp;Ciara Smyth,&nbsp;Anna Jones,&nbsp;Eleanor Watson,&nbsp;Jan Idle","doi":"10.1111/jppi.70077","DOIUrl":"https://doi.org/10.1111/jppi.70077","url":null,"abstract":"<p>Everyday harm is the negative impact on a person when someone else does or does not do something. Examples include ignoring another person, not giving them opportunities to build their skills, or not acting on their choices. Everyday harm occurs in all relationships, including between young people with cognitive disability and paid support workers. The organisational context in which young people and support workers interact influences the likelihood of everyday harm occurring. This article examines how organisational contexts affect how young people with disability and support workers prevent and address everyday harm in their relationship. Interviews were conducted with 36 pairs of young people with cognitive disability and their support workers. The research investigated how four aspects of organisational contexts influenced whether harm occurred. These were: how organisations use places of support; how policies are applied; the ways staff are managed; and how organisations arrange support for young people. Within each aspect, interactions between formal rules and informal culture prevented, addressed, and sometimes caused everyday harm. Organisational policies that address how contexts influence the occurrence of everyday harm would help reduce it.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-09-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70077","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148942613","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":"Preparing to Implement or Preparing to Fail? Why the Pre-Implementation Phase Is Decisive in the Intellectual Disability Context","authors":"Madeleine Winberg,&nbsp;Per Nilsen,&nbsp;Ulrika Mussener","doi":"10.1111/jppi.70073","DOIUrl":"https://doi.org/10.1111/jppi.70073","url":null,"abstract":"<p>Implementation failures in the intellectual disability context are often attributed to poor delivery, yet their roots frequently lie in the pre-implementation phase. Although highlighted in implementation frameworks, pre-implementation is commonly treated as administrative preparation rather than a decisive determinant of success. In the intellectual disability context, inadequate preparation is particularly consequential: fragmented governance, limited evidence bases and heterogeneous service-user needs heighten vulnerability to early-stage weaknesses. This conceptual debate paper argues that many implementation failures, both within research studies (e.g., randomised controlled trials, RCTs) and in implementing interventions into routine practice, originate in underdeveloped pre-implementation processes and that structural features of the intellectual disability context further amplify these risks. We propose repositioning pre-implementation as strategic core work through a pragmatic, co-designed and multi-level approach. The perceived tension between urgency and preparation is better understood as a false dichotomy; structured pragmatism allows services to act while learning. We outline a coordinated strategy comprising clarified governance, systematic readiness assessment, concurrent evidence generation, visible leadership engagement and institutionalised co-design to strengthen conditions for equitable, sustainable and durable implementation.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70073","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148942192","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":"More of the Same: A Document Analysis of the Government's Response to Ageing with Intellectual Disabilities in Hong Kong","authors":"Kangwei Xun,&nbsp;Christine Bigby,&nbsp;Tal Araten-Bergman","doi":"10.1111/jppi.70072","DOIUrl":"https://doi.org/10.1111/jppi.70072","url":null,"abstract":"<p>As the population of people ageing with intellectual disabilities grew in the 1980s, the Hong Kong government supported research exploring their needs and recommended a range of initiatives, including the promotion of community inclusion. This study aimed to identify how the government has understood and responded to the ‘problem’ of people ageing with intellectual disabilities since that time. A total of 53 documents published by the Hong Kong government between 2004 and 2024 related to ageing with intellectual disabilities, including reports, funding agreements, financial budgets, and policy recommendations, were identified. They were thematically analysed to identify how ageing with intellectual disabilities was represented as a problem and how the government responded to the problem. The findings show that people ageing with intellectual disabilities are portrayed as declining physically and ageing prematurely, their needs as no longer being met by vocational adult services, and their families as having limited capacity to meet their increasing care needs. With a few exceptions, government policies have not pursued specialist programs targeting ageing people or their families. Rather, policies have enhanced the capacity of general services for adults with intellectual disabilities to address health care needs, the capacity of parental caregivers through education and allowances, and have alleviated parental anxiety about future care through the establishment of Special Needs Trust. While recognising the changing needs of the growing number of people ageing with intellectual disabilities, the Hong Kong government has nonetheless continued the policy trajectory established in the 1980s that emphasises lifelong care and protection of people with intellectual disabilities rather than promoting community inclusion and independent living.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-08-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70072","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148784213","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":"Correction to “Chronicity of Challenging Behaviors in Persons With Severe/Profound Intellectual Disabilities Who Received Active Treatment During a 20-Year Period”","authors":"","doi":"10.1111/jppi.70071","DOIUrl":"https://doi.org/10.1111/jppi.70071","url":null,"abstract":"<p>\u0000 <span>Thompson, T. J.</span>, <span>M. W. Walker</span>, <span>J. B. LeBoeuf</span>, <span>R. J. Simeonsson</span>, and <span>E. Karakul</span>. <span>2022</span>. “ <span>Chronicity of Challenging Behaviors in Persons With Severe/Profound Intellectual Disabilities Who Received Active Treatment During a 20-Year Period</span>.” <i>Journal of Policy and Practice in Intellectual Disabilities</i> <span>19</span>, no. <span>2</span>: <span>162</span>–<span>170</span>. https://doi.org/10.1111/jppi.12395.\u0000 </p><p>In the author byline, the surname of the author Karacul, E. was incorrectly published as “Karakul.” The correct spelling should be “Karacul.”</p><p>We apologize for this error.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70071","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148615499","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":"Appropriate Care and Support for People With Down Syndrome in the Netherlands","authors":"Francine A. van den Driessen Mareeuw,&nbsp;Antonia M. W. Coppus,&nbsp;Diana M. J. Delnoij,&nbsp;Esther de Vries","doi":"10.1111/jppi.70069","DOIUrl":"https://doi.org/10.1111/jppi.70069","url":null,"abstract":"<p>The (often complex) needs experienced by people with Down syndrome are not always sufficiently answered by available care and support. This paper aims to provide insight into what appropriate care and support for people with Down syndrome in the Netherlands entails and how it could be optimised. It is the concluding paper of a larger project, which comprised a literature review, a qualitative exploration involving (caregivers of) people with Down syndrome, and a Delphi-study among professionals and patient organisations. Thematic analysis, allowing for comparison and interpretation, was used to integrate the data from these studies. Four key topics relevant for care and support for people with Down syndrome were identified: Complexity of care and support requiring coordination; finding care and expertise; Holistic, person-centred approach; communication (between professional and person with Down syndrome). The main conclusion of the paper is that care and support for people with Down syndrome would benefit from a model that integrates services around the specific needs of this group and in which expertise is easily found and referred to. Such a network-like model offers directions to policy makers, health insurers, other professionals and all other stakeholders, to jointly bring the care and support system for people with Down syndrome to a higher level.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"23 3","pages":""},"PeriodicalIF":2.2,"publicationDate":"2026-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70069","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148467505","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}