Journal of Applied Research in Intellectual Disabilities最新文献

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Natural Setting Interventions to Increase Physical Activity Level in Older Adults With Intellectual Disabilities: A Systematic Review 自然环境干预提高老年智障患者身体活动水平的系统综述。
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-10-01 DOI: 10.1111/jar.70127
Stéphanie Turgeon, Jason D'Amours, Christophe Maïano, Jade Paré, Diane Morin
{"title":"Natural Setting Interventions to Increase Physical Activity Level in Older Adults With Intellectual Disabilities: A Systematic Review","authors":"Stéphanie Turgeon,&nbsp;Jason D'Amours,&nbsp;Christophe Maïano,&nbsp;Jade Paré,&nbsp;Diane Morin","doi":"10.1111/jar.70127","DOIUrl":"10.1111/jar.70127","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>The present study aimed to understand the effectiveness of natural setting interventions to increase the level of PA in older adults (≥ 40 years old) with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Following PRISMA's most recent guidelines, a systematic review was used to synthesise research on PA interventions implemented in a natural setting to increase PA in older adults with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eight articles were retained based on inclusion and exclusion criteria: four group and four single-case designs. Most studies showed positive but small changes in PA levels. Due to the heterogeneity of the interventions tested, the samples and PA outcomes measured as well as the quality and risk of bias of the studies, results could not be generalised.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The systematic review highlights the pressing need for better quality research to understand if and how natural setting interventions can effectively increase PA levels in older adults with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70127","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145208663","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
Empower Our Growth as Athletes: Voices of Swedish Athletes With Intellectual Disability 授权我们作为运动员的成长:瑞典智障运动员的声音。
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-30 DOI: 10.1111/jar.70133
Johanna Oskarsson, Eva Flygare Wallén, Kim Wickman, Marie Lund Ohlsson
{"title":"Empower Our Growth as Athletes: Voices of Swedish Athletes With Intellectual Disability","authors":"Johanna Oskarsson,&nbsp;Eva Flygare Wallén,&nbsp;Kim Wickman,&nbsp;Marie Lund Ohlsson","doi":"10.1111/jar.70133","DOIUrl":"10.1111/jar.70133","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability participate in organised sports to a lesser extent than people in general. The aim of this study was to explore the motivation for engaging in sports among athletes using the theoretical framework of sense of belonging.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Semi-structured online interviews were carried out with athletes (<i>N</i> = 15, 8/7 women/men, 29.5 ± 9 years) with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The main theme ‘Empower me to grow as an athlete—adapt the support to help me develop my sport skills and social aspects’ showed that motivation, competence, perception, and opportunities were important factors for engaging in sports. Support was an important factor for creating adapted opportunities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Athletes with intellectual disabilities have motivation, want to feel competent, and to be athletes who belong in sports and develop as such. They also appreciate coaches giving adapted support that enhances understanding and promotes inclusion in the sport community.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12482094/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145194030","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
Perspectives of Young Adults With Mild Intellectual Disabilities on the Role Their Siblings Play in Shaping Self-Determination and Independence 青年轻度智障人士对其兄弟姐妹在塑造自我决定和独立中的作用的看法
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-27 DOI: 10.1111/jar.70126
Jakub Niedbalski
{"title":"Perspectives of Young Adults With Mild Intellectual Disabilities on the Role Their Siblings Play in Shaping Self-Determination and Independence","authors":"Jakub Niedbalski","doi":"10.1111/jar.70126","DOIUrl":"https://doi.org/10.1111/jar.70126","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The study aimed to identify the perceived role and significance of typically developing siblings in the emergence of self-determination in their brothers/sisters with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The study material consisted of information from individuals with intellectual disabilities. The analytical method relied on grounded theory methodology procedures.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Three main themes were identified in what young adults with mild intellectual disabilities shared about their typically developing siblings: attitude toward self-determination, the degree of involvement in and influence on the self-determination process and the level of (mis)alignment with the parental approach in this regard.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The results of this study show how young adults with intellectual disabilities perceive the role of their siblings in their pursuit of self-determination. The individuals with intellectual disabilities were demonstrated to be empowered to express their views, provided they had the right conditions and were given adequate opportunities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145146952","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
Front Line Leadership in Organisations for Persons With Intellectual and Developmental Disabilities: A Systematic Review 智障及发展障碍人士组织的前线领导:系统检讨。
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-25 DOI: 10.1111/jar.70125
Leady V. Fajardo-Castro, Sedigheh Jalili, Vicente Martínez-Tur
{"title":"Front Line Leadership in Organisations for Persons With Intellectual and Developmental Disabilities: A Systematic Review","authors":"Leady V. Fajardo-Castro,&nbsp;Sedigheh Jalili,&nbsp;Vicente Martínez-Tur","doi":"10.1111/jar.70125","DOIUrl":"10.1111/jar.70125","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Leadership is crucial for frontline managers leading direct support staff in intellectual and developmental disability (IDD) services because it impacts both the staff and service users.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A systematic review using CADIMA software, guided by the 2020 PRISMA statement, analysed 32 articles from Scopus, WOS, PsycINFO and EBSCO databases.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Practice Leadership (PL) emerges as the most commonly applied theoretical model, although other approaches, such as transformational leadership, are also utilised. PL showed significant associations with positive outcomes for service users (improved quality of life, fewer challenging behaviours) and staff (lower stress, higher job satisfaction). Specific competencies for frontline managers were identified. Despite its demonstrated benefits, numerous barriers impede the implementation of effective leadership, including funding constraints, high staff turnover and increased administrative demands.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Although PL provides a valuable framework for understanding leadership in IDD services, future research should focus on testing effective leadership interventions in diverse contexts.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70125","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145139682","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
Eyes of Understanding: Ophthalmologists' Attitudes Towards Caring for People With Intellectual Disabilities in Clinical and Nonclinical Settings 理解之眼:眼科医生在临床和非临床环境中对智障人士的护理态度
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-25 DOI: 10.1111/jar.70128
Chiun-Ho Hou, Yueh-Ching Chou, Christy Pu
{"title":"Eyes of Understanding: Ophthalmologists' Attitudes Towards Caring for People With Intellectual Disabilities in Clinical and Nonclinical Settings","authors":"Chiun-Ho Hou,&nbsp;Yueh-Ching Chou,&nbsp;Christy Pu","doi":"10.1111/jar.70128","DOIUrl":"https://doi.org/10.1111/jar.70128","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study compared ophthalmologists' and other health-care professionals' attitudes towards people with intellectual disabilities in clinical and nonclinical settings.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Between January 2022 and October 2023, a survey was conducted among 127 physicians, 100 optometrists/opticians, and 86 other health-care professionals in Taiwan. Their attitudes towards people with intellectual disabilities in nonclinical and clinical settings were examined using 14-item and 8-item scales, respectively; data on their training and care experience were collected.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Ophthalmologists exhibited positive attitudes in nonclinical settings (mean = 55.9/70) but exhibited less positive attitudes in clinical settings (mean = 23.5/40). In clinical settings, ophthalmologists exhibited the highest scores across most items, indicating the most favourable attitudes. Optometrists generally had the second-highest scores, followed by other healthcare professionals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Ophthalmologists' attitudes towards people with intellectual disabilities may considerably differ between clinical and nonclinical settings.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70128","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145146512","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
Feeding Challenges in Children With Down Syndrome: The Role of Aspiration and Clinical Subgroups 唐氏综合症儿童的喂养挑战:误吸和临床亚组的作用
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-25 DOI: 10.1111/jar.70130
Müberra Tanrıverdi, Gülşah Zengin Yazıcı, Güleser Güney Yılmaz, Türkan Uygur Şahin
{"title":"Feeding Challenges in Children With Down Syndrome: The Role of Aspiration and Clinical Subgroups","authors":"Müberra Tanrıverdi,&nbsp;Gülşah Zengin Yazıcı,&nbsp;Güleser Güney Yılmaz,&nbsp;Türkan Uygur Şahin","doi":"10.1111/jar.70130","DOIUrl":"https://doi.org/10.1111/jar.70130","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Feeding difficulties, including aspiration risk, are common in children with Down syndrome. Identifying factors affecting feeding modality is crucial.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This cross-sectional study included 335 children with Down syndrome (aged 4–12 years; mean 5.2). Feeding was assessed using the Functional Oral Intake Scale (FOIS), the Screening Tool of Feeding Problems (STEP), and clinical observation. Aspiration risk was identified through STEP items and clinician evaluation. FOIS scores categorised feeding as oral or non-oral.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Of participants, 74.1% were oral feeders and 25.9% received non-oral nutrition. Aspiration risk was present in 33.7%. Cluster analysis revealed distinct subgroups defined by aspiration, oral sensory issues, and behavioural problems. Younger age was significantly associated with higher aspiration risk (OR = 0.38, <i>p</i> = 0.001).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Aspiration risk influences feeding modality and subgroup characteristics. Early multidisciplinary assessment is essential, especially for younger children, to detect risk and guide safe, individualised feeding strategies.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145146735","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
Psychological Intervention in Parents of Children With Neurodevelopmental Disorders Using a Brief Protocol Based on Acceptance and Commitment Therapy 基于接受和承诺治疗的神经发育障碍患儿家长的心理干预
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-25 DOI: 10.1111/jar.70131
David Lobato, Francisco Montesinos, Eduardo Polín, Juan Miguel Flujas-Contreras, Inmaculada Gómez-Becerra, Lidia Budziszewska
{"title":"Psychological Intervention in Parents of Children With Neurodevelopmental Disorders Using a Brief Protocol Based on Acceptance and Commitment Therapy","authors":"David Lobato,&nbsp;Francisco Montesinos,&nbsp;Eduardo Polín,&nbsp;Juan Miguel Flujas-Contreras,&nbsp;Inmaculada Gómez-Becerra,&nbsp;Lidia Budziszewska","doi":"10.1111/jar.70131","DOIUrl":"10.1111/jar.70131","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parenting children with neurodevelopmental disorders and intellectual disabilities is associated with psychological and health problems in parents. It is also related to authoritarian and inflexible parenting, hindering the psychological adjustment of diagnosed children. Contextual therapies are developing a promising line of intervention for parents of children with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>To present a protocol for psychological flexibility in parents and its effect, aimed at reducing the impact of raising a child with a disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Standardised questionnaires and self-monitoring at pre, post, and at follow-up were administered to assess psychological changes after the intervention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results and Conclusions</h3>\u0000 \u0000 <p>Intervention was followed by an increase in general health and a decrease in psychological inflexibility, private eventsuppression, and parental stress at follow-up. An increase in supportive interactions and a decrease in punitive interactions were observed. Training parents in psychological flexibility may improve the adjustment of parents and children with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70131","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145139601","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
Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study 普拉德-威利综合征患者的兄弟姐妹的经历和支持需求——来自两阶段定性研究的结果。
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-23 DOI: 10.1111/jar.70122
Meghana Wadnerkar Kamble, Jen Dawe, Karen Bunning
{"title":"Experiences and Support Needs of Siblings of Individuals With Prader-Willi Syndrome- Findings From a Two-Stage Qualitative Study","authors":"Meghana Wadnerkar Kamble,&nbsp;Jen Dawe,&nbsp;Karen Bunning","doi":"10.1111/jar.70122","DOIUrl":"10.1111/jar.70122","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>There is limited evidence exploring sibling's perspective in Prader-Willi syndrome research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Objectives</h3>\u0000 \u0000 <p>To investigate the experiences and support needs of the siblings of individuals with Prader-Willi syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This two-stage qualitative study involved siblings aged 11 years onwards (<i>n</i> = 11) and parents (<i>n</i> = 8). Stage 1 utilised multiple age-specific focus groups and paired interviews. Data were analysed through integrated discourse and thematic analysis. Stage 2 included consensus meetings utilising the Nominal Group Technique.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Five major themes emerged during Stage 1: family and relationships, food practices, shared understanding, adjustment and advocacy, and support needs. The findings revealed some commonalities in the siblings' discourse, although their experiences varied based on their age. Parents were aware of these differences but had a different focus.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions and Implications</h3>\u0000 \u0000 <p>Sibling's experiences show a developmental trajectory and could explain variable parental perspectives. A lifespan and family-focused view could help tailor support systems.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12455692/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145126585","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
“I Don't Have to Say That They Are Dying Now”: Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany “我不必说他们现在正在死亡”:专业人士对德国儿科姑息治疗中与智障儿童和青少年的死亡相关沟通的看法
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-13 DOI: 10.1111/jar.70121
Maria Bonin, Helena Taubner
{"title":"“I Don't Have to Say That They Are Dying Now”: Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany","authors":"Maria Bonin,&nbsp;Helena Taubner","doi":"10.1111/jar.70121","DOIUrl":"https://doi.org/10.1111/jar.70121","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children and young people with life-limiting conditions in palliative care often have some degree of intellectual disability. Literature about death communication with this patient group is limited. This study aimed to explore professionals' perspectives on death communication with children and young people with intellectual disabilities in palliative care in Germany.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seven participants who worked in paediatric palliative care were interviewed. A qualitative study design was utilised with semi-structured interviews and a thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Two main themes were identified: <i>Tailoring communication styles to meet needs and abilities</i> and <i>Navigating the diversity of characteristics of the people involved.</i> Communication was adapted to each child's or young person's needs and highlighted as challenging.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Children's and young people's condition and functioning, parents' beliefs, professionals' attitudes regarding intellectual disability, and their uncertainty about children's and young people's needs were factors influencing communication about death, dying, and grief.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70121","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145038321","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
Proactive Cognitive Stimulation for Younger Adults With Down Syndrome. A Feasibility Randomised Control Trial 主动认知刺激治疗年轻唐氏综合症。可行性随机对照试验
IF 1.9 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-09-10 DOI: 10.1111/jar.70120
Sharon Hardiman, Rory Cousins, Aisling Ryan, Maria Kennedy, Leigh Hagan, Flavia H. Santos
{"title":"Proactive Cognitive Stimulation for Younger Adults With Down Syndrome. A Feasibility Randomised Control Trial","authors":"Sharon Hardiman,&nbsp;Rory Cousins,&nbsp;Aisling Ryan,&nbsp;Maria Kennedy,&nbsp;Leigh Hagan,&nbsp;Flavia H. Santos","doi":"10.1111/jar.70120","DOIUrl":"https://doi.org/10.1111/jar.70120","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Most adults with Down syndrome develop Alzheimer's disease (AD) pathology in their 30s, yet research into cognitive health programmes for this group remains limited.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A mixed-methods feasibility randomised control trial (RCT) evaluated an adapted, manualised group-based cognitive stimulation therapy (CST) programme for adults with Down syndrome (<i>N</i> = 12; <i>M</i><sub>age</sub> = 30) without dementia. Participants were randomly assigned to CST (<i>n</i> = 6) or control (services as usual; <i>n</i> = 6), with assessments at baseline, post-programme, and four-month follow-up by a blinded researcher.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The adapted CST was feasible, with high attendance, strong satisfaction, and good CST programme fidelity (all &gt; 85%). CST participants showed significant gains in adaptive behaviour at post-programme, maintained at follow-up, and a trend towards improved episodic memory at post-programme.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Manualised group-based CST can be successfully adapted for younger adults with Down syndrome and shows promise in supporting cognitive health for this population.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 5","pages":""},"PeriodicalIF":1.9,"publicationDate":"2025-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145022096","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
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