Journal of Applied Research in Intellectual Disabilities最新文献

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Fostering Healthy Relationships in Special Olympic Athletes: Supporting the Intersection of Intellectual Disability and Sexual Health 促进特殊奥林匹克运动员的健康关系:支持智力残疾和性健康的交叉
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-18 DOI: 10.1111/jar.70032
Stephanie Andreasen, Tessa Allison, Brennah Kamelchuk, Victoria Formusa, Brock Reissner, Stephanie Howe, Janet McCabe, Alan S. Martino, Carly A. McMorris
{"title":"Fostering Healthy Relationships in Special Olympic Athletes: Supporting the Intersection of Intellectual Disability and Sexual Health","authors":"Stephanie Andreasen,&nbsp;Tessa Allison,&nbsp;Brennah Kamelchuk,&nbsp;Victoria Formusa,&nbsp;Brock Reissner,&nbsp;Stephanie Howe,&nbsp;Janet McCabe,&nbsp;Alan S. Martino,&nbsp;Carly A. McMorris","doi":"10.1111/jar.70032","DOIUrl":"https://doi.org/10.1111/jar.70032","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities have equal rights to explore their sexuality and access sexual and reproductive healthcare, yet little is known about their needs and wants when accessing health education. The current study sought to learn about the sexual health interests, attitudes, and educational needs of Special Olympics (SO) athletes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Thirteen participants completed a questionnaire and a 45-min interview, including SO athletes, coaches and caregivers of SO athletes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Survey responses indicated the importance of access to sexual health education, but significant barriers were noted. Thematic analysis of interview transcripts highlighted the importance of healthy relationships, inequalities in learning, and need for information to promote safety.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Findings add to existing evidence that people with intellectual disabilities value healthy relationships and want to learn more about sexual health. Several recommendations are offered to increase the effectiveness of sexual health education.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70032","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143645794","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
A Qualitative Study Exploring Ways to Support Parent Caregivers of Adults With Intellectual and Developmental Disabilities 一项质性研究探讨如何支持智力和发育障碍成人的父母照顾者
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-12 DOI: 10.1111/jar.70025
Kelli A. Sanderson, Meghan M. Burke, Jennifer L. Bumble
{"title":"A Qualitative Study Exploring Ways to Support Parent Caregivers of Adults With Intellectual and Developmental Disabilities","authors":"Kelli A. Sanderson,&nbsp;Meghan M. Burke,&nbsp;Jennifer L. Bumble","doi":"10.1111/jar.70025","DOIUrl":"https://doi.org/10.1111/jar.70025","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the critical care that parents provide to their adult children with intellectual and/or developmental disabilities, we aimed to understand the supports parents need to be effective caregivers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Qualitative data (write-in responses) from a national survey completed by 315 parents of adults with intellectual and/or developmental disabilities were analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four themes emerged from the data, including the need fortangible support, social support, help navigating disability services and resources, and assistance with future planning.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings point to the need for financial compensation for parent caregivers of adults with intellectual and/or developmental disabilities, enhanced disability services, and spaces for families to connect and share resources.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143595463","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
Beyond the Frame: A Photo-Elicitation Study of Sibling Experiences on the Stay of Their Sibling With a Moderate to Profound Intellectual Disability in Group Homes 框架之外:对中度至重度智障儿童在集体之家的兄弟姐妹经历的照片启发研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-10 DOI: 10.1111/jar.70028
Sien Vandesande, Evy Meys, Bea Maes
{"title":"Beyond the Frame: A Photo-Elicitation Study of Sibling Experiences on the Stay of Their Sibling With a Moderate to Profound Intellectual Disability in Group Homes","authors":"Sien Vandesande,&nbsp;Evy Meys,&nbsp;Bea Maes","doi":"10.1111/jar.70028","DOIUrl":"https://doi.org/10.1111/jar.70028","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents' decisions to use out-of-home support for children with intellectual disabilities significantly impact all family members, including siblings. However, siblings' perspectives on this transition to group homes remain underexplored. This study examines siblings' emotional experiences and changes in their personal and family lives due to their brother or sister's move to a group home.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Using photo-elicitation and in-depth interviews, we engaged eight children (aged 7–17) with siblings in group homes. Participants captured changes or consistencies in daily life through photographs, which served as conversation triggers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Participants highlighted objects and spaces reminding them of their sibling and documented missed or regained activities and interactions. Five themes emerged, reflecting their emotional experiences and perspectives.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions and Implications</h3>\u0000 \u0000 <p>Siblings provided a nuanced view of their sibling's stay, noting benefits and feelings of incompleteness. Professionals should consider siblings' emotions and beliefs in caregiving decisions, recognising the significant impact on their lives.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143594863","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
My Life: A Photovoice Exploration of Aspirations of People With Intellectual Disabilities 《我的生活:智障人士抱负的光声探索》
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-10 DOI: 10.1111/jar.70027
Gisselle Gallego, Patricia O'Brien, Clara Goossens, Trevor Parmenter, Vivienne Riches, Mary-Ann O'Donovan
{"title":"My Life: A Photovoice Exploration of Aspirations of People With Intellectual Disabilities","authors":"Gisselle Gallego,&nbsp;Patricia O'Brien,&nbsp;Clara Goossens,&nbsp;Trevor Parmenter,&nbsp;Vivienne Riches,&nbsp;Mary-Ann O'Donovan","doi":"10.1111/jar.70027","DOIUrl":"https://doi.org/10.1111/jar.70027","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study aimed to evaluate the everyday ways that individuals with mild and moderate intellectual disabilities exercise choice and control.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Photovoice with 17 adults with mild to moderate intellectual disability who were receiving individual funding was conducted. Focus groups were held to review the photos.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>While some participants directed the activity they had chosen, others appeared to have been restricted to activities planned and organised by the service provider. Many participants took photos of locations rather than activities. In these cases, the locations they photographed represented their identity or something that was personally meaningful to them. This illustrated the individuals' power to create spaces and/or travel to places that are important to them.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>It is important to understand how certain activities facilitate choice and control. A critical examination of real choice compared with generic activities framed as choice continues to be needed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143594864","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
A Tele-Coaching Pilot Study: An Innovative Approach to Enhance Motor Skills in Adolescents With Down Syndrome 远程辅导试点研究:一种提高唐氏综合症青少年运动技能的创新方法
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-07 DOI: 10.1111/jar.70036
Matteo Giuriato, Alessandro Gatti, Vittoria Carnevale Pellino, Alice Bianchi, Sara Zanelli, Agnese Pirazzi, Caterina Cavallo, Antonia Quatrale, Alessandra Anna Gazzarri, Matteo Vandoni, Gianvincenzo Zuccotti, Valeria Calcaterra
{"title":"A Tele-Coaching Pilot Study: An Innovative Approach to Enhance Motor Skills in Adolescents With Down Syndrome","authors":"Matteo Giuriato,&nbsp;Alessandro Gatti,&nbsp;Vittoria Carnevale Pellino,&nbsp;Alice Bianchi,&nbsp;Sara Zanelli,&nbsp;Agnese Pirazzi,&nbsp;Caterina Cavallo,&nbsp;Antonia Quatrale,&nbsp;Alessandra Anna Gazzarri,&nbsp;Matteo Vandoni,&nbsp;Gianvincenzo Zuccotti,&nbsp;Valeria Calcaterra","doi":"10.1111/jar.70036","DOIUrl":"https://doi.org/10.1111/jar.70036","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Limited knowledge exists regarding the effectiveness of training programmes for individuals with Down syndrome, particularly innovative approaches like tele-coaching. Our pilot study aimed to improve strength and balance using tele-coaching sessions in children with Down syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Materials and Methods</h3>\u0000 \u0000 <p>We enrolled 18 children and adolescents (aged 9–17 years) with Down syndrome. The intervention consisted of a training programme based on games and was conducted remotely through an online platform (e-gym) 3 days per week (15 weeks). Participants engaged in playful activities targeting limb strength and balance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We found an improvement in systolic blood pressure (<i>p</i> = 0.04) and balance (<i>p</i> = 0.002). Our analysis showed a non-significant decrease in adiposity parameters, including weight, BMI, BMI <i>z</i>-score, WC and WC/H.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our findings contribute to evidence supporting online exercise interventions for individuals with Down syndrome. Integrating these interventions into community support programmes could enhance access to tailored services.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70036","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143564856","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
Risks and Safeguards in Social-Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review 成人发育障碍社会行为研究的风险与保障:质性系统回顾
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-07 DOI: 10.1111/jar.70031
Katherine McDonald, Madison Brodeur, Ariel Schwartz
{"title":"Risks and Safeguards in Social-Behavioural Research With Adults With Developmental Disabilities: A Qualitative Systematic Review","authors":"Katherine McDonald,&nbsp;Madison Brodeur,&nbsp;Ariel Schwartz","doi":"10.1111/jar.70031","DOIUrl":"https://doi.org/10.1111/jar.70031","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We identified participant-level risks and safeguards in social-behavioural research with adults with developmental disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>We conducted a qualitative systematic review on risks and safeguards in peer-reviewed research with adults with developmental disabilities. We identified research reporting on risks and safeguards published between 2009 and 2023 by searching eight databases and conducting hand searches of reference lists. We conducted thematic analysis using independent data extraction and coding, and investigator triangulation.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>From 23 manuscripts, we identified: (1) risks associated with research participation of adults with developmental disabilities (e.g., physical, relational, psychological, and social risks as well as a loss of privacy and confidentiality) and (2) safeguards (e.g., using guiding frameworks, reducing participant burden, securing privacy and confidentiality, and fostering psychological and relational well-being).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We encourage researchers to foster positive experiences so research participants feel valued and respected, and enjoy having the experience and opportunity to contribute to scientific discoveries.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70031","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143564855","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 Social Life of Young People With Intellectual Disabilities Studying at University: An Inclusive Research Using Photovoice 智障大学生的社会生活:基于Photovoice的包容性研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-06 DOI: 10.1111/jar.70035
María Rivero, Anabel Moriña
{"title":"The Social Life of Young People With Intellectual Disabilities Studying at University: An Inclusive Research Using Photovoice","authors":"María Rivero,&nbsp;Anabel Moriña","doi":"10.1111/jar.70035","DOIUrl":"https://doi.org/10.1111/jar.70035","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This article explores the social life within and outside the university of 17 young Spanish people with intellectual disabilities studying in a postsecondary education programme. This programme offers training for inclusion in the labour market. Students obtain a certificate, which is not an official university degree.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Inclusive research was conducted using photovoice. The data were collected through photographs, interviews, focus groups and discussion groups. The data were analysed using a system of categories and codes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Co-researchers identified family members, technology, and the course they are studying as supportive factors in their social life. Conversely, family overprotection, their characteristics, and bullying in earlier educational stages were barriers to establishing social relationships. The students propose recommendations, including improving their social and personal skills, increasing activities and gatherings among university students, and tackling bullying.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>That collaboration is necessary to ensure a more inclusive and equitable social environment for everyone.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143555015","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
Narratives From Female Siblings of Adults With Intellectual and Developmental Disabilities: A Photovoice Study on Identity and Growth Experiences in South Korea 来自智力和发育障碍成人的女性兄弟姐妹的叙述:韩国身份和成长经历的光声研究
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-06 DOI: 10.1111/jar.70029
Min Ah Kim, Jaehee Yi, Shinyeong Hwang, Jimin Sung, Seong Young Lee, Heejin Kim
{"title":"Narratives From Female Siblings of Adults With Intellectual and Developmental Disabilities: A Photovoice Study on Identity and Growth Experiences in South Korea","authors":"Min Ah Kim,&nbsp;Jaehee Yi,&nbsp;Shinyeong Hwang,&nbsp;Jimin Sung,&nbsp;Seong Young Lee,&nbsp;Heejin Kim","doi":"10.1111/jar.70029","DOIUrl":"https://doi.org/10.1111/jar.70029","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study sought a holistic understanding of lived experiences of individuals with a sibling who has intellectual and developmental disabilities using photovoice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Seven adult female siblings of individuals with intellectual and developmental disabilities in South Korea engaged in six weekly photovoice sessions, including an orientation session, phototaking on participant-driven themes, and four group discussion sessions in which they shared their photos.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Thirteen subthemes related to four primary themes highlighted their experiences. Although these siblings faced pressure from the responsibilities of caregiving, they described growth and reflection on their identities, subsequent shifts in perspectives, and finding a balance between self-care and fulfilling responsibilities to maintain their love for their sibling.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Social work professionals should acknowledge their challenges and growth and help them find balance in their life and caregiving role. It is also important to address their unique needs by considering the intersection of gender, culture, and disability.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143554583","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
Semi-Structured Interview Guide Development and Validation to Explore Parental Experiences and Expectations From Physiotherapy for Children With Down Syndrome 半结构化访谈指南开发和验证:探索唐氏综合症儿童物理治疗的父母经验和期望
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-06 DOI: 10.1111/jar.70030
Fathimath Akhila, Asir John Samuel
{"title":"Semi-Structured Interview Guide Development and Validation to Explore Parental Experiences and Expectations From Physiotherapy for Children With Down Syndrome","authors":"Fathimath Akhila,&nbsp;Asir John Samuel","doi":"10.1111/jar.70030","DOIUrl":"https://doi.org/10.1111/jar.70030","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Existing literature failed to explore the parental expectations and experiences from physiotherapy for children with Down syndrome. Hence, we aimed to validate a semi-structured interview guide to explore parental experiences and expectations from physiotherapy for children with Down syndrome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A 28-item interview guide was reduced to a six-item interview guide and validated through three rounds of Delphi survey in experts with prior experience in children with disabilities. The first and second rounds failed to meet the S-CVI/Ave threshold of 0.90, leading to revisions based on feedback.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>After suggestions were received from 10 experts with an average of 2 years of experience in dealing with children with Down syndrome, a six-item interview guide was finalised, with I-CVI of 0.78–1 and S-CVI of 0.9.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The generated interview guide aimed to explore the experiences and expectations of parents of children with Down syndrome undergoing physiotherapy, found to be valid.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143555014","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
Evaluating Patients With Mucopolysaccharidosis Type III: A Scoping Review on Diagnostic and Follow-Up Approaches 评估III型粘多糖病患者:诊断和随访方法的范围综述
IF 2.1 3区 医学
Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-03-03 DOI: 10.1111/jar.70024
Agustina Sabino Romagnoli, Letícia Nunes Campos, Daniel Fernandez-Guzman, Sofia Wagemaker, Federico Fernandez Zelcer, Carlos Stegmann, Carina F. Argüelles, Laura F. Sosa, Ayla Gerk, Jorgelina Stegmann
{"title":"Evaluating Patients With Mucopolysaccharidosis Type III: A Scoping Review on Diagnostic and Follow-Up Approaches","authors":"Agustina Sabino Romagnoli,&nbsp;Letícia Nunes Campos,&nbsp;Daniel Fernandez-Guzman,&nbsp;Sofia Wagemaker,&nbsp;Federico Fernandez Zelcer,&nbsp;Carlos Stegmann,&nbsp;Carina F. Argüelles,&nbsp;Laura F. Sosa,&nbsp;Ayla Gerk,&nbsp;Jorgelina Stegmann","doi":"10.1111/jar.70024","DOIUrl":"https://doi.org/10.1111/jar.70024","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Mucopolysaccharidosis type III (MPS III) is a rare lysosomal storage disease with systemic complications. This scoping review aimed to synthesise evidence regarding methods to diagnose and monitor MPS III.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We searched 10 databases for English and Spanish citations published from 2017 to 2022. Our study focused on human-based research that reported methods to diagnose and monitor MPS III, including experimental, quasi-experimental, observational studies, reviews, and guidelines. We followed PRISMA-ScR guidelines for screening and data extraction. Descriptive statistics and qualitative synthesis were used for analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>We included 35 eligible articles. Most studies were conducted in Europe and Central Asia (17/35, 48.6%) and constituted case reports (19/37, 51.4%). Clinical symptoms were reported in 30 articles and predominantly pertained to the nervous system (25/30, 83.3%), including intellectual disability (19/30, 63.3%), movement incoordination (17/30, 56.6%), and behavioural issues (16/30, 53.3%). Diagnostic methods (23/35, 65.7%) featured genetic testing and biochemical assays, including GAG measurement in urine. Brain MRI was the most recorded imaging study (11/20, 55.0%), while electrographic studies (10/35, 28.5%) encompassed electrocardiogram (5/10, 50%), electroencephalogram, and audiometry (3/10, 30% each). Scales and questionnaires (8/35, 22.8%) were reported, with the Bayley Scales of Infant Development being the most described (4/8, 50%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Our study comprehensively overviews the contributions of diagnostic and monitoring methods for MPS III. Our findings can guide clinicians in providing evidence-based care for this rare disease.</p>\u0000 </section>\u0000 </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143533952","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}
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