Journal of Policy and Practice in Intellectual Disabilities最新文献_第4页

Health care for persons with intellectual and developmental disabilities in India 印度智力和发育障碍人士的医疗保健

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-01-16 DOI: 10.1111/jppi.12484

Amitav Mishra, Jayanthi Narayan

{"title":"Health care for persons with intellectual and developmental disabilities in India","authors":"Amitav Mishra, Jayanthi Narayan","doi":"10.1111/jppi.12484","DOIUrl":"10.1111/jppi.12484","url":null,"abstract":"Legislations for persons with disabilities emerged in the 1990s in India, providing them with rights and entitlements. Aligned with the UNCRPD, the Rights of Persons with Disabilities Act (2016) supports improved programmes and services. There are no exclusive policies for those with intellectual and developmental disabilities. Different government departments and non-government organisations provide services including centrally sponsored programmes to persons with disabilities and enable them to exercise their rights. For example, rehabilitation and provision of aids and appliances lie with the Ministry of Social Justice and Empowerment, right to education is with the Ministry of Education, and, early intervention and health services and related supports are with the Ministry of Health. In India, non-government organisations also play a vital role in health care services. In this paper, we discuss the existing health care systems including medical services in India for persons with disabilities with a specific focus on persons with intellectual and developmental disabilities. The discussion include how the system was evolved and what is in place today, the coverage, strengths, and limitations in the system. We have tried to provide a comprehensive description of existing policies, and practices of health care as well as the cultural influences with regard to health care for people with intellectual and developmental disabilities in India.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139618512","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

Norwegian perspectives on health care for people with intellectual and developmental disabilities 挪威对智力和发育障碍人士医疗保健的看法

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-01-15 DOI: 10.1111/jppi.12492

Stine Skorpen, Erik Søndenaa

引用次数: 0

Expanding the quality of life paradigm: Contributions from the field of disability studies 拓展生活质量范式：残疾研究领域的贡献

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-01-15 DOI: 10.1111/jppi.12483

Meaghan Edwards, Alice P. Schippers

{"title":"Expanding the quality of life paradigm: Contributions from the field of disability studies","authors":"Meaghan Edwards, Alice P. Schippers","doi":"10.1111/jppi.12483","DOIUrl":"10.1111/jppi.12483","url":null,"abstract":"This article considers the contributions from the field of Disability Studies to the conceptualization of Quality of Life (QOL) for people labelled with Intellectual Disability (ID). We suggest four elements from the field of Disability Studies that may be incorporated into an evolving QOL paradigm. The first element concerns the meaning of disability itself. Those working in contemporary Disability Studies identify societal obstacles and points of inaccessibility as sources of disablement while also recognizing the experience of difference. We suggest this understanding of disability as an interaction between a person and the social world/environment may be included more explicitly in QOL conceptualization. A responsive and adaptable definition of disability in the QOL paradigm is recommended. The second element is the recognition of relationality. The field of contemporary disability studies challenges the value of considering a person's disability as a solitary medical experience and questions the goals of independence, instead considering the value in interdependence and community. This could be included in the QOL paradigm by further emphasizing the importance of relationships and contributions of those labelled with ID. The third element is participatory design and epistemic justice, making space for people labelled with ID to contribute to research and direct the course of their own lives and supports. This element of self-determination is important to QOL but an increase in participatory research, service, and support design in the field is recommended. The final element is intersectionality, the idea that the experience of disability must be understood in the context of other points of identity or marginalization such as race, gender, and sexuality. We recommend that the QOL paradigm should allow for these additional elements to be included in further design and research in the field.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12483","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139621123","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

Healthcare provision for Swedish persons with intellectual and developmental disabilities 为瑞典智力和发育障碍人士提供医疗服务

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-01-10 DOI: 10.1111/jppi.12489

Petra Björne, Eva Flygare Wallén

{"title":"Healthcare provision for Swedish persons with intellectual and developmental disabilities","authors":"Petra Björne, Eva Flygare Wallén","doi":"10.1111/jppi.12489","DOIUrl":"10.1111/jppi.12489","url":null,"abstract":"This paper aims to give a short description of Swedish healthcare provision for persons with intellectual and developmental disabilities (IDD). Swedish persons with IDD should have access to the general healthcare system on the same terms as the general population, and thereby enjoy equal opportunities for healthcare of good quality. Reports from government agencies and interest groups, however, describe a decentralised and fragmented healthcare system that requires significant coordination; a lack of adjustments; a lack of specialised healthcare professionals; and gaps in healthcare provision. Research in recent years has reported unequal access to planned healthcare; excess mortality and premature deaths; and insufficient or inadequate support in end-of-life care. We conclude that health inequalities and healthcare challenges faced by Swedish persons with IDD might be caused by obstacles at several structural levels. Allowing persons with IDD to access timely and adequate healthcare requires the development of better opportunities for coordination of healthcare and social services, as well as training for healthcare professionals and direct support staff.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12489","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139440867","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

Perspectives on healthcare for people with intellectual disabilities in Poland 波兰智障人士医疗保健展望

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-01-09 DOI: 10.1111/jppi.12488

Magdalena Agnieszka Wrzesińska, Sylwia Wrona, Dorota Prysak, Katarzyna Weronika Binder-Olibrowska

{"title":"Perspectives on healthcare for people with intellectual disabilities in Poland","authors":"Magdalena Agnieszka Wrzesińska, Sylwia Wrona, Dorota Prysak, Katarzyna Weronika Binder-Olibrowska","doi":"10.1111/jppi.12488","DOIUrl":"10.1111/jppi.12488","url":null,"abstract":"This paper presents current information on policy developments, service design, best practices, and approaches to empower the users of health and medical care services for people with intellectual disabilities in Poland. Polish regulations allow systemic support to be provided for all people with disabilities. However, Polish patients with intellectual disabilitiy (PwID) and their caregivers face many barriers. Although a key obstacle is the lack of a standard definition that approaches disability in an interdisciplinary way, PwID are also more likely to experience difficulties in personal communication in medical settings and less likely to encounter specialists prepared to work with this group. There is also a need to pay greater attention to the expectations of PwID. To facilitate a holistic approach to diagnosis and therapy, there needs to be coordination between different specialists, including medical staff, paramedics, psychologists, and teachers. Providing personal communication training for medical personnel, as well as developing dedicated procedures for PwID in primary health care, clinics and hospitals, will improve equal access to health and health literacy for all in Poland. Even so, it is important to respect the autonomy of PwID and the commitment of caregivers.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139443139","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

The humanistic perspective as “a lighthouse” for the perception of QOL/FQOL and its application 人本主义视角作为感知 QOL/FQOL 的 "灯塔 "及其应用

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-12-23 DOI: 10.1111/jppi.12485

Ran Neuman, Shunit Reiter, Roy I. Brown

引用次数: 0

Reasons for collaborating in inclusive research projects: The perspectives of researchers with experiential knowledge, academic researchers and principal investigators 合作开展包容性研究项目的原因：具有经验知识的研究人员、学术研究人员和主要研究人员的观点

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-12-10 DOI: 10.1111/jppi.12481

Kim H. J. M. van den Bogaard, Noud Frielink, Sanne A. H. Giesbers, Alice Schippers, Petri J. C. M. Embregts

{"title":"Reasons for collaborating in inclusive research projects: The perspectives of researchers with experiential knowledge, academic researchers and principal investigators","authors":"Kim H. J. M. van den Bogaard, Noud Frielink, Sanne A. H. Giesbers, Alice Schippers, Petri J. C. M. Embregts","doi":"10.1111/jppi.12481","DOIUrl":"https://doi.org/10.1111/jppi.12481","url":null,"abstract":"Inclusive research—in which people with an intellectual disability both collaborate with researchers and work as researchers themselves—has gained increased attention over the last three decades. Although the foundational principles of conducting inclusive research are well-established at this point, there is a relative dearth of insights concerning the underlying reasons for collaborating as part of inclusive research projects. Therefore, this study sought to identify the reasons why researchers with experiential knowledge (n = 9), academic researchers (n = 8) and principal investigators (n = 10) collaborate within inclusive research projects. All 27 participants were interviewed individually, in order to explore their reasons for collaborating within one of the six inclusive research projects, which encompassed a range of research avenues within the field of intellectual disability research. A thematic analysis was conducted to gain insight into these reasons. For the three groups of participants, several themes emerged, such as experiencing full participation (researchers with experiential knowledge), making research (processes) better suited to the needs of participants with an intellectual disability (academic researchers) and striving for equivalence (principal investigators). Understanding why people collaborate within inclusive research projects is important for facilitating collaborative partnerships, which are a precondition for inclusive research projects.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12481","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138713700","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

“Thin markets”: Recruitment and retention of disability staff to support effective post-parental care planning in rural Australia "稀薄市场"：招聘和留住残疾员工，支持澳大利亚农村地区有效的父母照顾后规划

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-12-04 DOI: 10.1111/jppi.12480

Stuart Wark, Lia Bryant, Tyson Morales-Boyce

{"title":"“Thin markets”: Recruitment and retention of disability staff to support effective post-parental care planning in rural Australia","authors":"Stuart Wark, Lia Bryant, Tyson Morales-Boyce","doi":"10.1111/jppi.12480","DOIUrl":"10.1111/jppi.12480","url":null,"abstract":"The life expectancy of persons with intellectual disability is increasing, and this is often occurring concurrently with the aging of their long-term parental carers. Research in both Australia and around the world indicates that proactive post-parental care planning is not widely implemented, and transitions primarily happen suddenly following a personal crisis for the primary caregiver. Little focus in Australia has been placed on identifying the barriers that inhibit post-parental care planning in rural areas, specifically in the context of the newly implemented National Disability Insurance Scheme. This paper examines the factors that limit disability services and their staff in supporting successful post-parental care planning for individuals with intellectual disability and their aging carers in rural South Australia. Small focus groups were conducted with three groups of rural disability support workers using online technologies to assist with the participants' geographic disparity. A semi-structured interview guide was developed prior to commencement and was used to initiate discussions on key points. A thematic analysis methodological approach was used for data analysis. There were three themes identified through the analysis; Recruitment; Provision of Care; and Retention. The key findings relating to these themes are presented and supported with exemplar quotes. This research proposes three recommendations for policy or practice change: developing a national advertising campaign for new disability staff that positively emphasizes the high-level skillset need for proactive planning; supporting rural disability providers to collaborate to establish shared teams of staff with expertise in post-parental care planning; and, using incentive payments to retain staff with these invaluable skillsets in the disability sector.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12480","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138601941","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

Continuing conceptualising QOL through application to lives of young adults with Down syndrome 通过应用于患有唐氏综合症的年轻成人的生活，继续将 QOL 概念化

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-11-30 DOI: 10.1111/jppi.12479

Rhonda Faragher, Jan Lloyd

{"title":"Continuing conceptualising QOL through application to lives of young adults with Down syndrome","authors":"Rhonda Faragher, Jan Lloyd","doi":"10.1111/jppi.12479","DOIUrl":"10.1111/jppi.12479","url":null,"abstract":"Quality of Life (QOL) has been used as a sensitising concept for decades, inviting all to consider the potential for individuals with intellectual and developmental disabilities to live a life full of meaning and purpose. This article presents the outcomes of our deliberations on domains of QOL undertaken for a study investigating lives of young adults with Down syndrome. Various groups have published domains and from these we distilled a list of six: Physical well-being, Emotional well-being; Self-determination; Material well-being; Personal beliefs and development; and Social inclusion. Our synthesis of domains raised two issues for further deliberation in the community of QOL scholars in the field of intellectual and developmental disability: the place of Information and Communication Technology (ICT) and Rights. ICT has not been considered as a domain but we argue it could be. Rights have been included as a domain by some researchers in previous conceptualisations but we do not. Instead we suggest they may be better placed as an underpinning principle, with fundamental impact on all aspects of QOL. A conclusion we are left with is that domains, while helpful for research, can never be a fixed list. What matters to individuals and society in general in framing lives of meaning and purpose will change over time. Even so, there is still value and need for setting domains for specific research studies.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-11-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12479","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139196706","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

COVID-19 pandemic experiences of group home residents with intellectual disabilities: Findings from inclusive, qualitative interviews with self-advocates in Massachusetts COVID-19 大流行对智障集体之家居民的影响：对马萨诸塞州自我倡导者的包容性定性访谈结果

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-11-21 DOI: 10.1111/jppi.12478

Matthew S. Smith, Anne Fracht, Diana Mairose, Anthony Phillips, Michael Ashley Stein

{"title":"COVID-19 pandemic experiences of group home residents with intellectual disabilities: Findings from inclusive, qualitative interviews with self-advocates in Massachusetts","authors":"Matthew S. Smith, Anne Fracht, Diana Mairose, Anthony Phillips, Michael Ashley Stein","doi":"10.1111/jppi.12478","DOIUrl":"https://doi.org/10.1111/jppi.12478","url":null,"abstract":"Little research on the experiences of persons with intellectual disabilities (ID) during the COVID-19 pandemic has been done by persons with ID themselves. Moreover, little research focuses on group home residents with ID, despite the greater risks they faced of COVID-19 transmission and mortality. To address these gaps, researchers with and without ID organized qualitative interviews and a focus group discussion with six group home residents with ID in Massachusetts. Study participants identified as self-advocates and reported feelings of frustration and isolation that at times were exacerbated by community access restrictions imposed by their group homes. All participants described group home staff efforts to keep them physically safe, while some reported lapses that contributed to their risk of contracting COVID-19. None described comparable efforts to address their social and mental health needs. All participants received information about COVID-19 and related precautions from group home staff, but none reported receiving information about heightened risks of contracting COVID-19 while living in group settings. Also, notwithstanding pandemic-related challenges, most participants identified at least one positive change in their lives, either by changing where they lived or worked or by forging new relationships. Participants' perspectives, as presented to researchers with ID, shed unique light on the range of group home residents' pandemic experiences, signal opportunities for interventions addressing social isolation, and underscore the efficacy of inclusive research methods in eliciting information from research participants with ID.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138713711","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