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Research, Advocacy, and Practice for Complex and Chronic Conditions最新文献

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Examining the Impact of the COVID-19 Pandemic on Caregivers of Children with Complex and Chronic Conditions 研究COVID-19大流行对患有复杂和慢性疾病的儿童护理人员的影响
Research, Advocacy, and Practice for Complex and Chronic Conditions Pub Date : 2021-12-09 DOI: 10.14434/rapcc.v40i1.33294
M. Greer, C. Pierce
{"title":"Examining the Impact of the COVID-19 Pandemic on Caregivers of Children with Complex and Chronic Conditions","authors":"M. Greer, C. Pierce","doi":"10.14434/rapcc.v40i1.33294","DOIUrl":"https://doi.org/10.14434/rapcc.v40i1.33294","url":null,"abstract":"In March of 2020 the president of the United States declared a national emergency as COVID-19 transmitted  across the globe. Over 18 months later , the pandemic continues to pose challenges as residents of the world adapt to the ever-changing shuffle of precautions, regulations, and restrictions. During this unprecedented time we have globally learned to expect the unexpected; which has become the norm. Caregivers of Children with Complex and Chronic Conditions wear multiple hats when taking care of their children. They may serve as a nurse, therapist, educational advocate, chauffeur, or personal assistant. Due to the ever changing routines and mandates as a result of the pandemic, parents have become worn down leading to  mental health concerns and caregiver burnout. During the pandemic caused by COVID-19, caregivers of children with unique needs are faced with a new set of challenges \u0000  \u0000 ","PeriodicalId":267717,"journal":{"name":"Research, Advocacy, and Practice for Complex and Chronic Conditions","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128337686","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Feasibility of a Home Motor Skill Intervention for Children with CHARGE Syndrome 家庭运动技能干预对CHARGE综合征儿童的可行性
Research, Advocacy, and Practice for Complex and Chronic Conditions Pub Date : 2021-12-09 DOI: 10.14434/rapcc.v40i1.31710
L. Lieberman, Pamela Haibach-Beach, Melanie Perreault, A. Brian, Luize Bebriša-Fedotova
{"title":"Feasibility of a Home Motor Skill Intervention for Children with CHARGE Syndrome","authors":"L. Lieberman, Pamela Haibach-Beach, Melanie Perreault, A. Brian, Luize Bebriša-Fedotova","doi":"10.14434/rapcc.v40i1.31710","DOIUrl":"https://doi.org/10.14434/rapcc.v40i1.31710","url":null,"abstract":"This study examined the effect of a home-based six-week motor skill intervention for children with CHARGE syndrome. Six families with children with CHARGE syndrome participated in this study. The children were assessed on their motor skills with the Test of Gross Motor Development 3 prior to the intervention and then again on the four most practiced motor skills after the intervention. Parents were also given a parental perceptions questionnaire before and post intervention. The families were provided a Gross Motor Development Curriculum, videos, tip sheets, and equipment to support the intervention. Families maintained weekly logs of their specific training practices. Each family was interviewed, and the transcripts were analyzed for themes. The four themes that emerged were Personal goals, Improvement, Barriers, and Overcoming challenges. Results revealed that it is feasible to utilize this protocol to improve motor skills for children with CHARGE syndrome.","PeriodicalId":267717,"journal":{"name":"Research, Advocacy, and Practice for Complex and Chronic Conditions","volume":"38 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134299397","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
High School General Education Teachers’ Perceptions of Students with Significant Disabilities in Inclusive Settings 高中通识教育教师对全纳环境中严重残疾学生的认知
Research, Advocacy, and Practice for Complex and Chronic Conditions Pub Date : 2021-12-09 DOI: 10.14434/rapcc.v40i1.31756
Allison M. Kroesch, Katherine N. Peeples
{"title":"High School General Education Teachers’ Perceptions of Students with Significant Disabilities in Inclusive Settings","authors":"Allison M. Kroesch, Katherine N. Peeples","doi":"10.14434/rapcc.v40i1.31756","DOIUrl":"https://doi.org/10.14434/rapcc.v40i1.31756","url":null,"abstract":"Thanks to legislation that supports inclusion of students with significant disabilities in general education, general education teachers need to have appropriate knowledge, training, and self-efficacy in order to work successfully with these students in their classrooms. In this study, a survey of high school general education teachers investigated their perceived knowledge and capabilities specifically related to teaching students with significant disabilities. A range of subject areas, years of experience, and educational/training attained were surveyed. The findings support existing, recent research in highlighting the challenges of securing a high-quality inclusive learning experience for students with significant disabilities. Implications include the need for training and experience in special education topics for general education teachers to support their ability to teach students with significant disabilities in inclusive settings.","PeriodicalId":267717,"journal":{"name":"Research, Advocacy, and Practice for Complex and Chronic Conditions","volume":"20 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"116864841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A Pilot Study of Adult Disability Services and Legislative Advocacy Among Parents of Youth with Multiple Disabilities 成人残疾服务与多重残疾青少年家长立法倡导的试点研究
Research, Advocacy, and Practice for Complex and Chronic Conditions Pub Date : 2021-12-08 DOI: 10.14434/rapcc.v39i1.30980
M. Burke, Kristina Rios, J. Aleman‐Tovar, Zach Rossetti
{"title":"A Pilot Study of Adult Disability Services and Legislative Advocacy Among Parents of Youth with Multiple Disabilities","authors":"M. Burke, Kristina Rios, J. Aleman‐Tovar, Zach Rossetti","doi":"10.14434/rapcc.v39i1.30980","DOIUrl":"https://doi.org/10.14434/rapcc.v39i1.30980","url":null,"abstract":"            Although parents of individuals with multiple disabilities have spearheaded legislation for students with disabilities, little is known about their legislative advocacy experiences with respect to adult disability policy and, relatedly, adult disability services. In this pilot study, we examined the perspectives and experiences of nine parents of youth with multiple disabilities with respect to legislative advocacy. Most participants had negative perceptions of: their legislators, adult disability policies, and, relatedly, adult disability services. Many participants suggested changes to increase the flexibility of Medicaid Home and Community Based Services. Directions for future research and practice are discussed.","PeriodicalId":267717,"journal":{"name":"Research, Advocacy, and Practice for Complex and Chronic Conditions","volume":"14 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2021-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122884941","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Changing Seasons, Changing Names 变换季节，变换名字
Research, Advocacy, and Practice for Complex and Chronic Conditions Pub Date : 2020-12-31 DOI: 10.14434/rapcc.v39i1.29468
D. Columbia
{"title":"Changing Seasons, Changing Names","authors":"D. Columbia","doi":"10.14434/rapcc.v39i1.29468","DOIUrl":"https://doi.org/10.14434/rapcc.v39i1.29468","url":null,"abstract":"editorial ","PeriodicalId":267717,"journal":{"name":"Research, Advocacy, and Practice for Complex and Chronic Conditions","volume":"55 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"113937561","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","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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