Journal of Policy and Practice in Intellectual Disabilities最新文献

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Providers' Perspectives on Resources Needed for Disseminating and Implementing Evidence-Based Practices for Autism: A Qualitative Study 提供者对传播和实施自闭症循证实践所需资源的看法:一项定性研究
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-07-29 DOI: 10.1111/jppi.70019
Jennica Li, Yue Yu, Melina Melgarejo, Patricia L. Schetter, Jessica Suhrheinrich, Aubyn Stahmer
{"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}
引用次数: 0
Celebrating Plurality: How to Embed Inclusive Research Structurally and Meaningfully in Research Practice Related to People With Profound Intellectual and Multiple Disabilities 庆祝多元性:如何将包容性研究结构性和有意义地嵌入与深度智力和多重残疾人士相关的研究实践中
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-07-23 DOI: 10.1111/jppi.70018
Wietske Verhagen, Annet ten Brug, Aly Waninge, Annette van der Putten
{"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}
引用次数: 0
“Navigating Social Security Employment Supports: The Experiences of Young Adults With Intellectual Disabilities Who Want to Work” “社会保障就业支持:想要工作的智障青年的经历”
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-07-16 DOI: 10.1111/jppi.70015
Cristina C. Parsons, Andrew C. Persch
{"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}
引用次数: 0
Ageing With Intellectual Disabilities and Complex Age-Related Conditions in Ireland: In Search of a Model of Care 老龄化与智力残疾和复杂的年龄相关条件在爱尔兰:在寻找一种模式的护理
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-07-09 DOI: 10.1111/jppi.70016
Fintan Sheerin, Maureen D'Eath, Sandra Fleming, Amara Naseer, Mary McCarron, Philip McCallion
{"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}
引用次数: 0
Meaning-Making Experiences of Family Caregivers Caring for a Member With Intellectual Disability and Challenging Behaviour 家庭照顾者照顾智障成员及挑战性行为的意义建构经验
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-06-25 DOI: 10.1111/jppi.70014
Alice Nga Lai Kwong, Lisa Pau Le Low
{"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}
引用次数: 0
Quality of Life as a Paradigm With Multiple Applications in the Field of Intellectual and Developmental Disabilities 生活质量作为一种范式在智力和发育障碍领域的多重应用
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-06-25 DOI: 10.1111/jppi.70013
Ivan Brown, Roy I. Brown, Meaghan Edwards, Alice Schippers
{"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}
引用次数: 0
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 以澳大利亚孤独症和/或智力残疾者为例的注册护士护理合理调整的横断面调查
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-06-01 DOI: 10.1111/jppi.70012
A. Cashin, A. Pracilio, T. Buckley, K. Griffin, J. N. Trollor, N. J. Wilson
{"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}
引用次数: 0
Implementation of Annual Health Assessments for Adults With Intellectual Disabilities: An Integrative Review 智力残疾成人年度健康评估的实施:一项综合综述
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-05-20 DOI: 10.1111/jppi.70010
Genevieve Breau, Ritika Tiwari, Shaiyini Ravindran, Esther Bakker-van Gijssel
{"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}
引用次数: 0
Sharing Information About Infectious Diseases With Disability Group Home Communities 与残疾团体之家社区分享传染病资讯
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-05-14 DOI: 10.1111/jppi.70009
Kate L. M. Anderson, Olumuyiwa Omonaiye, Catherine M. Bennett, Melissa J. Bloomer, Jennifer L. David, Angela Dew, Patsie Frawley, Amie O'Shea, Meredith Prain, Susan Taylor, Dion Williams, Nathan J. Wilson, Joanne Watson
{"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}
引用次数: 0
Formal and Natural Supports: Perspectives From Adults With Intellectual and Developmental Disabilities, Family Members, and Support Workers 正式和自然支持:来自智力和发育障碍成人、家庭成员和支持工作者的观点
IF 2.5 4区 医学
Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2025-05-10 DOI: 10.1111/jppi.70011
Heather Michelle Aldersey, Xiaolin Xu, Caitlin Piccone, Monique Nelson, Donna Thomson, Rebecca Pauls, Linda Perry
{"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}
引用次数: 0
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