Journal of Policy and Practice in Intellectual Disabilities最新文献

{"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}

{"title":"A Cross-Sectional Survey of Reasonable Adjustments of Registered Nurse Care as an Example of Person-Centred Care for People With Autism and/or Intellectual Disability in Australia","authors":"A. Cashin,&nbsp;A. Pracilio,&nbsp;T. Buckley,&nbsp;K. Griffin,&nbsp;J. N. Trollor,&nbsp;N. J. Wilson","doi":"10.1111/jppi.70012","DOIUrl":"https://doi.org/10.1111/jppi.70012","url":null,"abstract":"<p>The concept of person-centred care is embraced internationally as a fundamental aspiration for nursing and health professions more broadly. For many, person-centred care is seen as a fundamental part of the art of nursing. The available research suggests that while an aspiration of the profession, person-centred care is not actual nursing practice. A limited body of research has identified positive impacts on patient outcomes attributable to person-centred care. In the context of care for people with autism and/or intellectual disability, reasonable adjustments are an example of person-centred care. This national cross-sectional survey aimed to determine the degree of awareness of the concept of reasonable adjustments, the types of self-reported adjustments made, and the relationship between making adjustments and the individual factors of self-efficacy, ambivalence, and role autonomy. From the 422 Australian registered nurse respondents, it was identified that 54% of respondents were aware of the concept of reasonable adjustments, and the majority did not report making person-centred adjustments to practice for this group. Further, it was found that people with autism and/or intellectual disability are least likely to experience person-centred care in acute hospitals and aged care contexts. It was identified that person-centred care, indicated by the example of reasonable adjustments, is not the predominant current model of care as self-reported by registered nurses in Australia. This is contrary to the current national standards for practice.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70012","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144191098","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":"Implementation of Annual Health Assessments for Adults With Intellectual Disabilities: An Integrative Review","authors":"Genevieve Breau,&nbsp;Ritika Tiwari,&nbsp;Shaiyini Ravindran,&nbsp;Esther Bakker-van Gijssel","doi":"10.1111/jppi.70010","DOIUrl":"https://doi.org/10.1111/jppi.70010","url":null,"abstract":"<p>People with intellectual disabilities (ID) face health inequalities, often arising from undiagnosed health conditions. An annual health assessment (or health check) administered by a primary care provider can be a systematic method of identifying these health conditions and initiating treatment and management, leading to better health outcomes. While these health checks are recommended in many countries, including the United Kingdom (UK), they have not been administered to all adults with ID. In light of this, the barriers and facilitators to systematic implementation have not been systematically studied. The aim of this Integrative review was to identify the barriers and facilitators to the systematic implementation of health checks, using the Consolidated Framework for Implementation Research (CFIR). This model has been used in implementation research and is useful in determining the levels of healthcare interaction that are involved in the delivery of this intervention. We identified 35 peer-reviewed primary research articles that met inclusion criteria. The barriers and facilitators to health check implementation were extracted and coded according to the individual involved, whether it was a barrier or facilitator, and the domains and constructs of the CFIR model. We concluded that most factors related to the physician's role, as well as many factors related to the intervention itself. Some of these facilitators included the perceived efficacy of the health check intervention and the belief that it provides more comprehensive care. Some of the barriers include additional time that is necessary to implement the intervention and a lack of resources. Future interventions could train physicians and target some structural health system barriers to implementing health checks, and further research with physicians, patients, and carers is needed. This research may confirm the barriers and facilitators to health check implementation and explore methods to promote health checks.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70010","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144100892","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":"Sharing Information About Infectious Diseases With Disability Group Home Communities","authors":"Kate L. M. Anderson,&nbsp;Olumuyiwa Omonaiye,&nbsp;Catherine M. Bennett,&nbsp;Melissa J. Bloomer,&nbsp;Jennifer L. David,&nbsp;Angela Dew,&nbsp;Patsie Frawley,&nbsp;Amie O'Shea,&nbsp;Meredith Prain,&nbsp;Susan Taylor,&nbsp;Dion Williams,&nbsp;Nathan J. Wilson,&nbsp;Joanne Watson","doi":"10.1111/jppi.70009","DOIUrl":"https://doi.org/10.1111/jppi.70009","url":null,"abstract":"<p>Infectious disease outbreaks pose significant health risks and can exacerbate social inequalities for people with intellectual disabilities who live in group homes. Providing accessible information to these communities is crucial for managing these risks. This study, conducted during the COVID-19 pandemic in Australia (2021–2022) aimed to: (1) identify communication priorities for group home residents with intellectual disabilities during an infectious disease outbreak, and (2) develop a comprehensive, scalable strategy for effective communication during future outbreaks. The study employed a mixed-methods approach, including a scoping review of policies and academic literature; interviews with 6 group home residents, 10 support workers, and 2 disability accommodation managers; and observations in 2 group homes. Data were analysed collaboratively with project advisors, including disability sector representatives and community advocates. Additionally, a small e-Delphi study (<i>n</i> = 8) produced consensus recommendations for future practice. The research resulted in 19 best-practice guidelines to ensure inclusive and effective communication about infectious diseases in group home settings. Key drivers of success included capacity for accessible communication and supported decision-making, relevant policies, workload and workforce considerations, effective collaboration, accountability, and quality assurance. People with intellectual disability who live in a group home have the right to be informed during infectious disease outbreaks and to exercise autonomy based on that information. Systemic changes and meaningful engagement with all stakeholders will be essential for more effective and inclusive health communication during future outbreak events.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70009","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143949749","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":"Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers","authors":"Heather Michelle Aldersey,&nbsp;Xiaolin Xu,&nbsp;Caitlin Piccone,&nbsp;Monique Nelson,&nbsp;Donna Thomson,&nbsp;Rebecca Pauls,&nbsp;Linda Perry","doi":"10.1111/jppi.70011","DOIUrl":"https://doi.org/10.1111/jppi.70011","url":null,"abstract":"<p>People with intellectual and developmental disabilities and their families often utilize disability-related supports to navigate their lives in the community. These supports can come from formal (paid) and natural (unpaid) sources. It is important to understand people's experiences navigating both types of supports within the support ecosystem. To that end, we conducted six focus groups (4-7 participants each) comprising 9 persons with disabilities, 10 family members, and 15 formal support providers to understand the following: (a) What are the experiences of adults with intellectual and developmental disabilities and their family members in engaging with both natural and formal support systems in British Columbia and Ontario, Canada? (b) How might current disability-related support systems in Canada be improved to better enable adults with intellectual and developmental disabilities and their families to live good lives? Findings indicated the importance of approaching supports from a human rights-based (rather than a deficit-based) approach and highlighted the critical importance of relationships and community connections. Findings affirmed that integration of both formal and natural supports is essential, with formal supports often facilitating and enabling natural support networks to flourish. Some participants reflected on how challenging it is to create and maintain natural support networks and believed that much of the work to do this still remains with parents, in spite of efforts to expand circles of support. Finally, findings highlighted systemic barriers and policy hurdles that individuals and families experienced when trying to secure the support they needed and wanted, particularly when transitioning from child to adult formal support systems. We argue that flexibility of government funding, enhancement of community connections, and focus on transition between service systems will be essential in enabling individuals with intellectual and developmental disabilities and their families to live their best lives.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 2","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70011","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143930390","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":"Smart Personalized Continence Care for People With Profound Intellectual and Multiple Disabilities: A Theory and Practice- Based Implementation Guideline for a Digital Innovation","authors":"Vivette van Cooten,&nbsp;Brigitte Boon,&nbsp;Marieke Gielissen,&nbsp;Inge Bongers,&nbsp;Ghislaine van Mastrigt,&nbsp;Odile Smeets","doi":"10.1111/jppi.70007","DOIUrl":"https://doi.org/10.1111/jppi.70007","url":null,"abstract":"<p>Introducing smart technologies can personalize and improve continence care for people with profound intellectual and multiple disabilities within residential care facilities. Currently, continence care is provided according to fixed schedules. This can lead to oversaturated incontinence materials, leading to leakages and an increased chance of incontinence-associated dermatitis or unnecessary changes. Both result in an unneeded burden for individuals with profound intellectual and multiple disabilities and their caregivers. Smart technologies that notify caregivers when incontinence materials need to be changed can improve the quality of life for individuals experiencing incontinence and lead to a more efficient care process for their caregivers. Yet, implementation is challenging. We present a Guideline for Smart Continence Care (SCC) Implementation in Residential Disability Care. The guideline is systematically and iteratively developed by combining implementation literature and daily practice. Lessons learned from applying a draft version at six residential care facilities are integrated. Eight steps are identified and detailed to guide the SCC implementation process: (1) analyze and determine goals for each target group, (2) analyze the innovation, (3) analyze the context, (4) arrange preconditions, (5) formulate implementation strategy, (6) carry out and monitor the implementation, (7) evaluate and adapt implementation strategy, and (8) continued use and upscaling. The guideline is illustrated by examples from actual SCC implementation practice. This guideline is not only useful for those who lead the implementation of SCC in residential care, but may offer guidance for other care technology implementations in various care settings as well.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-03-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70007","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143689104","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":"Advancing Trauma-Informed Care System-Change in Disability Organizations: A National Learning Collaborative","authors":"John M. Keesler,&nbsp;Jade Presnell,&nbsp;Steven Brown","doi":"10.1111/jppi.70008","DOIUrl":"https://doi.org/10.1111/jppi.70008","url":null,"abstract":"<p>Organizations supporting people with intellectual and developmental disabilities (IDD) are increasingly becoming aware of the impact of trauma, yet have often fallen short in their efforts to respond through trauma-informed care (TIC). This study describes and evaluates the first-of-its-kind learning collaborative (LC) to advance system-wide TIC among four IDD organizations, occurring during the COVID-19 pandemic. A multi-method approach, including a pre- and post-survey for staff, process notes, and a liaison survey, was used to monitor and assess organizational change and experience with the LC. Quantitative analyses demonstrated mixed results associated with staff-level change. The process notes revealed the complexity of organizational change and a positive learning experience that was further supported by the liaison survey. Limitations, implications, and future directions are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70008","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143602402","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":"Involving and Engaging People With Learning Disabilities in the DECODE* Research Project (*Data-Driven Machine-Learning Aided Stratification and Management of Multiple Long-Term Conditions in Adults With Intellectual Disabilities)","authors":"Amy Faull,&nbsp;Sarah Rabbitte,&nbsp;Reza Kiani,&nbsp;Gyuchan Thomas Jun,&nbsp;Sonal Kuchadia,&nbsp;Heidi Neville,&nbsp;Amar Jobanputra,&nbsp;Satheesh Gangadharan","doi":"10.1111/jppi.70004","DOIUrl":"https://doi.org/10.1111/jppi.70004","url":null,"abstract":"<div>\u0000 \u0000 <p>Some groups of people are underserved in research. This means that they do not take part in research as much as they should. People with learning disabilities do not often take part in research. There are lots of reasons for this, such as researchers not knowing how to (1) make research easy to understand for people with learning disabilities, (2) communicate well with them and (3) hold meetings in places that people can access easily. This paper talks about how the DECODE project included people with learning disabilities in Patient and Public Involvement (PPI) groups which meant that they were able to share their ideas as part of the research team. There were four PPI groups in DECODE: two groups for people with learning disabilities and two groups for family members and carers. Members from local learning disability networks joined the groups. Easy Read information leaflets and posters were used to support people to join the project. We were able to make adjustments so that people could keep coming to the groups. Regular meetings were held and taxis could be booked for people. PPI members had training about research and updates from the researchers about how their work was helping the project. PPI were involved from the start of the project's design. They supported us to make Easy Read information leaflets and told us what was difficult to understand. People with learning disabilities are able to take part in research when reasonable adjustments are made and when researchers take time to get to know people individually.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143571345","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":"Developing Self-Advocacy Skills in Japanese Special Needs High Schools: A Survey of Teachers Educating Students With Intellectual Disabilities","authors":"Shuhei Ogawa,&nbsp;Michio Kojima","doi":"10.1111/jppi.70006","DOIUrl":"https://doi.org/10.1111/jppi.70006","url":null,"abstract":"<p>This study investigated the awareness and frequency of self-advocacy skills development training for students with intellectual disabilities conducted by teachers in Japanese special needs high school sections. The study developed the Difficulty Scale for Self-Advocacy Skills Development (DS-SSD) and the Frequency Scale for Self-Advocacy Skills Development (FS-SSD). Using these tools, the study surveyed teachers in special needs schools for students with intellectual disabilities. Teachers' responses (<i>N</i> = 80) to the DS-SSD underwent exploratory factor analysis, which revealed two primary factors: “difficulty in developing self-understanding” and “difficulty in developing communication skills for rights.” The results indicated that teachers with more years of experience, especially in special needs education, reported less difficulty developing students' self-understanding. Teachers with more years of teaching in schools found developing students' communication skills for rights less challenging. However, the study found no relationship between the frequency of self-advocacy skills development and the teachers' gender, overall teaching experience, or experience in special needs education. These findings offer insights into the challenges and frequency of self-advocacy skills instruction provided in special needs schools. Factors influencing the efficacy of these educational practices are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.70006","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143530103","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":"Middle-Aged Adults' Perspectives on Caregiving for Their Siblings With Intellectual and Developmental Disabilities","authors":"Se Kwang Hwang,&nbsp;Kyung Mee Kim,&nbsp;Chung Eun Lee","doi":"10.1111/jppi.70005","DOIUrl":"https://doi.org/10.1111/jppi.70005","url":null,"abstract":"<div>\u0000 \u0000 <p>There is limited understanding of middle-aged siblings' experiences of assuming caregiving roles and responsibilities in non-Western cultures. This study explored middle-aged siblings' perceived caregiving obligation for their siblings with intellectual and developmental disabilities within the South Korean societal framework that emphasizes the cultural value of “filial piety.” Data from in-depth semi-structured interviews with 13 middle-aged siblings were thematically analyzed. The findings showed that middle-aged siblings exhibit a strong urge to fulfill their filial duties and willingly embrace the primary caregiver role. However, gender, birth order, and financial responsibilities significantly influence the fulfillment of filial obligations, with older, male, and financially secure siblings who co-reside with their siblings with disabilities being more likely to embrace caregiving roles. Despite advancements in South Korea's disability policies, the concept of caregiving as a familial duty rooted in filial piety remains unchanged. Future measures should consider individualized, culturally sensitive support for middle-aged siblings.</p>\u0000 </div>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"22 1","pages":""},"PeriodicalIF":2.5,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143475748","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}