Journal of Applied Research in Intellectual Disabilities最新文献

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Work-Related Quality of Life and Well-Being of Social Care Workers in the Disability Sector in Ireland 爱尔兰残疾部门社会护理工作者与工作有关的生活质量和福利
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-19 DOI: 10.1111/jar.70087
Victoria Hogan, Martin Power, Michael Hogan, Margaret Hodgins
{"title":"Work-Related Quality of Life and Well-Being of Social Care Workers in the Disability Sector in Ireland","authors":"Victoria Hogan,&nbsp;Martin Power,&nbsp;Michael Hogan,&nbsp;Margaret Hodgins","doi":"10.1111/jar.70087","DOIUrl":"https://doi.org/10.1111/jar.70087","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Scant attention has been paid to the quality of working life of social care workers in Ireland. This study sought to characterise both the quality of working life and the well-being of social care workers in the disability sector.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A cross-sectional survey of social care workers (<i>n</i> = 307) was conducted. Measures of work-related quality of life, well-being, organisational constraints, workload and turnover intention were included in the survey.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Experiencing higher organisational constraints, longer work hours and higher workload were related to lower quality of working life, <i>F</i>(9,242) = 24.953, <i>p</i> &lt; 0.001. Higher organisational constraints and higher workload also negatively influenced well-being, <i>F</i>(9,240) = 11.494, <i>p</i> &lt; 0.001. Linear regression indicated that higher turnover intention was influenced by lower quality of working life, <i>F</i>(1, 279) = 306.319, <i>p</i> &lt; 0.001.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results indicate the importance of the influence of work-related factors on both quality of working life and well-being in social care workers in disability services in Ireland.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70087","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144315373","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Person-Centred Plans From the Perspective of Persons-Supported in a Community Care Setting: A Qualitative Study 以人为本的社区护理计划:一项质性研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-18 DOI: 10.1111/jar.70084
Gillian Young, Maria Mathews, Leslie Meredith, Shannon L. Sibbald, Dana Ryan
{"title":"Person-Centred Plans From the Perspective of Persons-Supported in a Community Care Setting: A Qualitative Study","authors":"Gillian Young,&nbsp;Maria Mathews,&nbsp;Leslie Meredith,&nbsp;Shannon L. Sibbald,&nbsp;Dana Ryan","doi":"10.1111/jar.70084","DOIUrl":"https://doi.org/10.1111/jar.70084","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>In partnership with PHSS, a community care agency in London, Ontario, we describe the person-centred planning model. Person-centred plans (PCPs) are mandated in the community care sector and created annually through discussions with the person-supported, staff, family/friends and community members. PCPs are individualised, integrated into daily activities and contribute towards larger goals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We interviewed 18 persons-supported and one family member. Participants were individuals with developmental, medical, or complex physical needs and supported by PHSS. We explored goals, accomplishments, the individualisation of PCPs, experiences with the process, and supports/barriers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>PCPs are tailored to the person-supported's needs and preferences, linked to daily activities, and guide larger goals. PCPs are facilitated by the person-supported's goals and capacity and organisational factors (e.g., funding, staffing).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This study evaluates person-centred planning from the perspectives of persons-supported, providing insights to enhance these processes within community care settings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70084","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144315196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Thriving for Adolescents With Intellectual Disability: A Photo-Elicitation Qualitative Study 智力残疾青少年的蓬勃发展:一项照片启发定性研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-16 DOI: 10.1111/jar.70077
Annie S. Mills, Teresa Sellitto, Dallas D. Sorken, Katie Saunders, Lauren Bishop, Jan Willem Gorter, Jonathan A. Weiss
{"title":"Thriving for Adolescents With Intellectual Disability: A Photo-Elicitation Qualitative Study","authors":"Annie S. Mills,&nbsp;Teresa Sellitto,&nbsp;Dallas D. Sorken,&nbsp;Katie Saunders,&nbsp;Lauren Bishop,&nbsp;Jan Willem Gorter,&nbsp;Jonathan A. Weiss","doi":"10.1111/jar.70077","DOIUrl":"https://doi.org/10.1111/jar.70077","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There has been a shift in recent decades towards studying the strengths of people with intellectual disability to promote wellbeing. This study developed a conceptualisation of <i>thriving</i> specific to adolescents with intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A photo-elicitation qualitative design was used. Participants were 12 adolescents (ages 12–19) with a diagnosis of intellectual disability and their parents. Adolescents and their parents separately chose photos demonstrating thriving for the adolescent. Semi-structured interviews were conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Reflexive thematic analysis was used. Five core themes that interact and contribute to thriving were developed: <i>Enjoying Life</i>, <i>Developing</i>, <i>Having a Positive Sense of Self</i>, <i>Connecting,</i> and <i>Mattering</i>. Parents also identified the importance of adolescents being <i>Safe &amp; Supported</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This thriving framework can serve as a guiding template for community supports and future quantitative research studies for adolescents with intellectual disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70077","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144299633","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
More Parents With Intellectual Disabilities than we Thought: A Short Report from England 智力残疾的父母比我们想象的要多:来自英国的一份简短报告
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-16 DOI: 10.1111/jar.70052
Beth Tarleton, Katy Burch
{"title":"More Parents With Intellectual Disabilities than we Thought: A Short Report from England","authors":"Beth Tarleton,&nbsp;Katy Burch","doi":"10.1111/jar.70052","DOIUrl":"https://doi.org/10.1111/jar.70052","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This paper recognises that there has been a long history of research into support for parents with intellectual disabilities in England and a helpful approach to integrating adults with intellectual disabilities in society called ʻValuing Peopleʼ. This focus has now faded.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The paper draws together findings from three recent English studies.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>One third of the cases involving babies in the child protection system involved parents with diagnosed intellectual disability or a borderline or specific learning disability. The other two studies found that general adult social services were not set up to work with these parents, that social workers wanted more or better training and support and there was variable awareness of the Good Practice Guidance document.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Parents with intellectual disabilities need to be on this Government's agenda; their need for tailored, on-going support should also be acknowledged.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70052","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144292451","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Virtual Acceptance and Commitment Training to Promote Wellbeing of Staff Supporting Adults With Intellectual Disabilities: A Feasibility Study 虚拟接纳及承诺训练促进支援成人智障员工的福祉:可行性研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-16 DOI: 10.1111/jar.70058
Kendra Thomson, Sarah Davis, Sarah Ludmilla Bernier, Carly Magnacca, Steve Noone, Yona Lunsky
{"title":"Virtual Acceptance and Commitment Training to Promote Wellbeing of Staff Supporting Adults With Intellectual Disabilities: A Feasibility Study","authors":"Kendra Thomson,&nbsp;Sarah Davis,&nbsp;Sarah Ludmilla Bernier,&nbsp;Carly Magnacca,&nbsp;Steve Noone,&nbsp;Yona Lunsky","doi":"10.1111/jar.70058","DOIUrl":"https://doi.org/10.1111/jar.70058","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Staff supporting people with intellectual disabilities may experience work-related stress that adversely impacts their wellbeing and capacity to provide support. Acceptance and Commitment Training interventions like Promotion of Acceptance in Carers and Teachers (PACT) have been shown to be effective for reducing stress and promoting psychological flexibility in direct staff in the United Kingdom.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aims</h3>\u0000 \u0000 <p>We evaluated the feasibility of a virtual adaptation of PACT for staff in Canada.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Within a single-arm feasibility trial, we assessed five categories of feasibility: acceptability, demand, implementation, adaptation and limited efficacy testing. Between 2021 and 2023, 149 staff consented to participate and 81 completed all measures.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The intervention was a feasible and acceptable method of supporting staff wellbeing with promising outcomes in terms of improved psychological flexibility and decreased stress, anxiety and depression.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Discussion/Conclusion</h3>\u0000 \u0000 <p>Future research should explore the benefits of this intervention relative to other staff wellbeing interventions in randomised controlled trials.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70058","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144300228","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Assessment of Support for Independent Living: Perspectives of People With Intellectual Disabilities and Support Professionals 独立生活支援评估:智障人士及支援专业人士的观点
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-16 DOI: 10.1111/jar.70079
Judit Fullana, Maria Pallisera, Gemma Díaz-Garolera
{"title":"Assessment of Support for Independent Living: Perspectives of People With Intellectual Disabilities and Support Professionals","authors":"Judit Fullana,&nbsp;Maria Pallisera,&nbsp;Gemma Díaz-Garolera","doi":"10.1111/jar.70079","DOIUrl":"https://doi.org/10.1111/jar.70079","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>The Convention on the Rights of Persons with Disabilities establishes that the support to independent living should be community-based and under the choice and control of each person. This study compares the assessment of support practices by people with intellectual disabilities receiving support versus support staff and by people living in personalised support arrangements versus those living in group homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>One hundred and two people with intellectual disabilities and 99 professionals assessed the support using the <i>Guide for the Assessment of Support to Independent Living</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Statistical analyses found significant differences between people receiving support and support staff in areas such as social relationships, ICT use, community participation, and evaluation of supports. People living in their own homes had a better perception of the support they received than those living in group homes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The study highlights the need for tools to help professionals and support recipients assess support practices.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70079","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144292452","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Solomon Judges Medea: Experiences of Mothers With Intellectual Disabilities Whose Children Were Removed 所罗门审判美狄亚:孩子被带走的智障母亲的经历
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-16 DOI: 10.1111/jar.70082
Egle Sumskiene, Violeta Gevorgianiene
{"title":"Solomon Judges Medea: Experiences of Mothers With Intellectual Disabilities Whose Children Were Removed","authors":"Egle Sumskiene,&nbsp;Violeta Gevorgianiene","doi":"10.1111/jar.70082","DOIUrl":"https://doi.org/10.1111/jar.70082","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This paper explores experiences of mothers with intellectual disabilities, with an emphasis on oppressive circumstances and stereotypes that contribute to poorer antenatal and social outcomes for mothers and their children, potentially leading to child removal. Drawing parallels to archetypical figures of Solomon and Medea, we explore how society treats these mothers differently. The research question is: what social, institutional, and personal circumstances lead to the loss of parental rights for mothers with intellectual disabilities?</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We conducted a small qualitative study to explore the experiences of mothers with intellectual disabilities whose children had been removed in Lithuania. Twelve mothers participated in semi-structured interviews to examine the interplay of oppressive social, institutional, and personal factors contributing to the loss of their parental rights. A thematic analysis was conducted, identifying six key themes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The mothers in this study shared experiences of being trapped in cycles of abuse, feeling unsupported by others, and the emotional toll of separation from their children. Their experiences of being devalued and set up to fail resonate with stereotypical mother figures in the myths of Solomon and Medea.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Authority leverages its power to separate these mothers from their children and erase their maternal identity, punishing women who challenge traditional expectations of how a mother should behave.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144292453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Narrative Practice in Investigative Interviews of Individuals With Intellectual Disability 智障人士调查访谈中的叙事实践
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-13 DOI: 10.1111/jar.70074
Misun Yi
{"title":"Narrative Practice in Investigative Interviews of Individuals With Intellectual Disability","authors":"Misun Yi","doi":"10.1111/jar.70074","DOIUrl":"https://doi.org/10.1111/jar.70074","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities are amongst the groups most vulnerable to sexual crimes. However, their limited cognitive abilities can make it challenging to obtain detailed statements from victims during investigative interviews. This study examined whether practising answering open-ended questions early in the interview increases the accuracy and abundance of incident-related information provided by individuals with intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Forty-eight adults with intellectual disabilities and 32 children without disabilities aged 5–7 were interviewed about a photography event.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>When practising with open-ended questions, adults with intellectual disability and children without disabilities gave greater detail than those whose practise narrative involved specific questions. Furthermore, both groups provided more information in response to open-ended questions. No effects were observed for inaccurate details.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Narrative practices could afford individuals with intellectual disability the opportunity to familiarise themselves with open-ended prompts, enabling them to provide more information during the substantive phase of the interview.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70074","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144273058","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis 智障人士对最佳临终关怀的看法:一项定性证据综合
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-11 DOI: 10.1111/jar.70067
Corrina Alex Bebbington, Elizabeth Croot
{"title":"The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis","authors":"Corrina Alex Bebbington,&nbsp;Elizabeth Croot","doi":"10.1111/jar.70067","DOIUrl":"https://doi.org/10.1111/jar.70067","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities face inequities in access to end-of-life care and inequalities in its quality and delivery. This review aimed to synthesise qualitative evidence to understand their own perspectives about what contributes to optimal end-of-life care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methodology</h3>\u0000 \u0000 <p>Data from 93 participants in five qualitative studies were thematically synthesised to identify optimal care and inform recommendations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four overarching and interrelated analytical themes were generated. (1) Optimal care recognises heterogeneity and is person-centred. It aligns with individuals' wishes and preferences which are established through ‘active’ communication. (2) This enables an individual's holistic support needs to be identified. (3) It fulfils ethical obligations around autonomy, equity and a person's ‘right to know’. (4) It involves the necessary people to ensure all needs are met.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Optimal end-of-life care is person-centred, holistic, uses ‘active’ communication, meets ethical obligations and involves the necessary people in care.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70067","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144264609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Successful Online Exercise Intervention Studies for Individuals With Intellectual Disabilities Including Down Syndrome: Best Practices and Recommendations 包括唐氏综合症在内的智力残疾个体的成功在线运动干预研究:最佳实践和建议
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-06-10 DOI: 10.1111/jar.70080
Thessa Hilgenkamp, Amy Bodde, Sarah Mann, Brain Helsel, Joseph Sherman, Jessica Danon, Lauren Ptomey
{"title":"Successful Online Exercise Intervention Studies for Individuals With Intellectual Disabilities Including Down Syndrome: Best Practices and Recommendations","authors":"Thessa Hilgenkamp,&nbsp;Amy Bodde,&nbsp;Sarah Mann,&nbsp;Brain Helsel,&nbsp;Joseph Sherman,&nbsp;Jessica Danon,&nbsp;Lauren Ptomey","doi":"10.1111/jar.70080","DOIUrl":"https://doi.org/10.1111/jar.70080","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Online exercise interventions can improve access to tailored programmes for individuals with intellectual disabilities (including Down syndrome). This paper aimed to describe best practices and provide recommendations for online physical activity or exercise programmes for this population.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Two research teams with extensive experience delivering online physical activity and exercise interventions in &gt; 240 individuals with intellectual disabilities, combined with input from participant/caregiver dyads, describe adaptations to online delivery of programmes with regard to development, recruitment, data collection, intervention delivery, communication and staff requirements, based on two specific online programmes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Adaptations to an online delivery are necessary for every aspect of exercise interventions for individuals with intellectual disabilities. All phases benefit from input from the community.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>When the appropriate adaptations are made for online delivery, as described in this paper, online physical activity or exercise interventions can be highly successful for individuals with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 3","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70080","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144244645","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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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