Journal of Policy and Practice in Intellectual Disabilities最新文献_第6页

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":"21 1","pages":""},"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":"21 1","pages":""},"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":"20 4","pages":"415-427"},"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":"20 4","pages":"428-437"},"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":"21 1","pages":""},"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":"20 4","pages":"405-414"},"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

Expressions of a humanistic orientation among service providers supporting adults with intellectual and developmental disabilities 为智力和发育障碍成人提供支持的服务提供者对人文取向的表述

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-10-16 DOI: 10.1111/jppi.12477

Ran Neuman, Shunit Reiter, Nirit Karni-Vizer

{"title":"Expressions of a humanistic orientation among service providers supporting adults with intellectual and developmental disabilities","authors":"Ran Neuman, Shunit Reiter, Nirit Karni-Vizer","doi":"10.1111/jppi.12477","DOIUrl":"10.1111/jppi.12477","url":null,"abstract":"The study investigated the influence of the humanistic orientation on the perspectives of service providers working with individuals with intellectual and developmental disabilities (IDD) and the self-evaluation of service users. The humanistic orientation, which emerged in the 1990s, emphasizes the rights of people with IDD to lead a meaningful life based on their personal needs and desires. However, challenges persist as some service providers prioritize the acquisition of normative life skills over fostering autonomy. The study was based on quantitative methodology and included 61 service providers and 95 of their service users. The study's findings indicate that the humanistic orientation was endorsed by nearly one half of the service providers compared with one third who endorsed a medical orientation. Those endorsing a humanistic orientation also reported that their service users had higher levels of efficacy than those with a medical perception of IDD. Positive correlations were found regarding the assessments made by service providers and their service users on self-efficacy. Findings suggest that a humanistic orientation encourages optimism among service providers and a positive dyadic interaction between providers and users. It is suggested that the humanistic orientation be applied as a guiding principle underlying the daily support provided to adults with IDD.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 4","pages":"394-404"},"PeriodicalIF":1.7,"publicationDate":"2023-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136112354","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: 1

Quality of life between the hammer and the anvil: Challenges of living with a disability in areas of protracted political conflict 锤与砧之间的生活质量：长期政治冲突地区残疾人的生活挑战

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-10-15 DOI: 10.1111/jppi.12472

Yael Karni-Visel, Dana Roth, Neveen Ali-Saleh Darawshy, Mitchell Schertz

{"title":"Quality of life between the hammer and the anvil: Challenges of living with a disability in areas of protracted political conflict","authors":"Yael Karni-Visel, Dana Roth, Neveen Ali-Saleh Darawshy, Mitchell Schertz","doi":"10.1111/jppi.12472","DOIUrl":"10.1111/jppi.12472","url":null,"abstract":"Article 11 of the United Nations' Convention for the Rights of Persons with Disabilities and various relevant humanitarian actors recognize the obligation to ensure the protection and safety of persons with disabilities in various situations of risk, including armed and political conflict. Nonetheless, protracted crises exacerbate the existing inequalities and vulnerabilities of individuals with disabilities. This article suggests that, in addition to recognized subcultural issues, the political context should be considered in the policies and practices concerning those with disabilities. To assist individuals with disabilities and their families who are living in situations of protracted political conflict and the professionals who serve them, research should further explore these issues and their effects in terms of quality-of-life measures. A better understanding of the individual, organizational, and social contextual factors of political conflict in the conceptualization and measurement of the quality of life of individuals with disabilities and their families will promote improved and more sensitive services, support, and interventions.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135758946","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

Augmentative and alternative communication continuing education programs for multidisciplinary teams—Does it make a difference? 多学科团队的辅助和替代性交流继续教育计划--它能带来改变吗？

IF 1.7 4区医学

Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2023-10-04 DOI: 10.1111/jppi.12467

Orit E. Hetzroni, Adi Ne'eman

{"title":"Augmentative and alternative communication continuing education programs for multidisciplinary teams—Does it make a difference?","authors":"Orit E. Hetzroni, Adi Ne'eman","doi":"10.1111/jppi.12467","DOIUrl":"10.1111/jppi.12467","url":null,"abstract":"Although augmentative and alternative communication (AAC) has been in use for several decades, many multidisciplinary teams do not implement the available knowledge in their practice. Limited availability of AAC programs has been purported as a reason for its limited use. The purpose of this study was to investigate the effects of a dynamic intensive continuing education program aimed to provide multidisciplinary teams with theoretical and practical knowledge in AAC, teamwork, literacy, and family issues regarding the application of AAC for individuals with complex communication needs, on the participants' knowledge, skills, attitudes, and myths. A mixed method was used to investigate two out-service and three in-service continuing education programs consisting of 136 multidisciplinary staff members. Results demonstrate that participants gained knowledge and skills, changed attitudes, and refuted previously held myths. Participants reported changes in practice and in collaboration within their teams, with individuals at their settings, and with their families.","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 4","pages":"359-370"},"PeriodicalIF":1.7,"publicationDate":"2023-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12467","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135643994","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