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Journal of Intellectual & Developmental Disability最新文献

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“Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities “不断为平衡而奋斗”：荷兰父母照顾智力和多重残疾儿童的生活经历
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-05-29 DOI: 10.3109/13668250.2022.2073707
L. Geuze, A. Goossensen, Samuel Schrevel
{"title":"“Continuously struggling for balance”: The lived experiences of Dutch parents caring for children with profound intellectual and multiple disabilities","authors":"L. Geuze, A. Goossensen, Samuel Schrevel","doi":"10.3109/13668250.2022.2073707","DOIUrl":"https://doi.org/10.3109/13668250.2022.2073707","url":null,"abstract":"ABSTRACT Background Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46237855","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
Parents’ experiences of raising adolescents with intellectual or developmental disabilities 父母养育有智力或发育障碍的青少年的经验
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-05-18 DOI: 10.3109/13668250.2022.2057843
J. Kerr, J. Sharry, C. Wilson
{"title":"Parents’ experiences of raising adolescents with intellectual or developmental disabilities","authors":"J. Kerr, J. Sharry, C. Wilson","doi":"10.3109/13668250.2022.2057843","DOIUrl":"https://doi.org/10.3109/13668250.2022.2057843","url":null,"abstract":"ABSTRACT Background Parents of children with intellectual or developmental disabilities have unique challenges in navigating the developmental period of adolescence. The present study explored the experiences of parents connected with disability services throughout the island of Ireland of parenting their child during adolescence. Method Five focus groups were conducted with twenty-five parents of adolescents and young adults with intellectual or developmental disabilities. Parents were asked open-ended questions about their experiences of raising their adolescent child. Transcripts of the focus groups were coded using reflexive thematic analysis. Results On the journey from childhood to adolescence parents have to manage a number of different stressors with and for their child. These occur at societal, service provision, familial, and personal levels, with each stressor interacting with others to create vicious circles of struggle. Conclusions Parents' struggles are multi-fold, and are not discreet entities that can be separated. The struggle is dynamic and continuous.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-05-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43961553","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
Family relationships in intellectual disability: Parents’ perceptions as elicited by family photographs 智力残疾的家庭关系：家庭照片引发的父母认知
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-04-04 DOI: 10.3109/13668250.2022.2052625
R. A. Correia, M. Seabra-Santos
{"title":"Family relationships in intellectual disability: Parents’ perceptions as elicited by family photographs","authors":"R. A. Correia, M. Seabra-Santos","doi":"10.3109/13668250.2022.2052625","DOIUrl":"https://doi.org/10.3109/13668250.2022.2052625","url":null,"abstract":"ABSTRACT Background Families, as a network of emotional connections, assume a particularly important role when there is a member with intellectual disabilities (ID). The main aim of the study is to explore the perceptions of parents of persons with ID about their family relationships. Method Ten parents of persons with ID, four of which were fathers, were interviewed using photo-elicited interviews and 60 photographs were analysed. Results Persons depicted in the photographs were mainly members of the nuclear family, and the moments captured were mostly family rituals. Joy was the most present feeling in the photographs and “saudade” the most evoked feeling when viewing them. Family relationships assume an essential role for parents, and acceptance and inclusion emerged as central concepts. Conclusions The core value of family relationships for parents, as a resource to deal with the challenges brought on by the condition, should be taken into account in interventions.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42476929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Worlds of care: The emotional lives of fathers caring for children with disabilities 关爱世界：父亲关爱残疾儿童的情感生活
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-21 DOI: 10.3109/13668250.2021.1997140
P. McKearney
{"title":"Worlds of care: The emotional lives of fathers caring for children with disabilities","authors":"P. McKearney","doi":"10.3109/13668250.2021.1997140","DOIUrl":"https://doi.org/10.3109/13668250.2021.1997140","url":null,"abstract":"Is contemporary masculinity too fragile to handle the weight of care, dependence, and disability? Aaron Jackson’s Worlds of Care explores the ways that men in the United States face the economic, emotional, and relational challenges when their children with developmental disabilities require intensive care. How does this kind of parenting affect these men’s understanding of their responsibilities, their life-course, and their gendered identity? The book demonstrates the social conditions that create the challenges in the first place – such as an arduous form of capitalism and trajectories of masculinity that scar men’s engagement with care. And it shows us also what it is like for men to live in and through these conditions in the pursuit of a good life for themselves and their children. In the context of a literature that focuses on the relationship between care and the social conditions of women, the result is a rare and insightful look into the relationship between masculinity, dependence, and disability.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43532734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
An evaluation of the German teacher version of the Developmental Behaviour Checklist in children and adolescents with intellectual disability 德国教师版发展行为检查表对智障儿童和青少年的评价
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-17 DOI: 10.3109/13668250.2022.2044269
Carmen L. A. Zurbriggen, C. Müller
{"title":"An evaluation of the German teacher version of the Developmental Behaviour Checklist in children and adolescents with intellectual disability","authors":"Carmen L. A. Zurbriggen, C. Müller","doi":"10.3109/13668250.2022.2044269","DOIUrl":"https://doi.org/10.3109/13668250.2022.2044269","url":null,"abstract":"ABSTRACT Background The Developmental Behaviour Checklist (DBC) is an established, internationally used questionnaire for assessing behavioural and emotional problems among young people with developmental or intellectual disabilities (ID). The present study aims to evaluate the psychometric properties of its German teacher version (DBC-T). Method The German DBC-T was administered to 397 school staff members who reported twice on 1177 children and adolescents with ID over a period of 7–9 months. Data were analysed within an exploratory structural equation modelling framework. Results Our results supported the five-factor structure of the DBC-T and found good reliability for all scales. Analyses on the relationship of DBC-T scores with students’ age, gender, and adaptive behaviour provided further evidence for the validity of the DBC-T. Conclusions Our study endorses the notion that the German DBC-T is an important instrument both for research and practice. Limitations and further directions are discussed.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44240296","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Reducing restrictive measures in complex long-term care for people with intellectual disabilities: Implementation interventions through the lens of normalisation process theory 减少智力残疾人复杂长期护理中的限制性措施：通过正常化过程理论的视角实施干预
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-15 DOI: 10.3109/13668250.2022.2044270
E. Bisschops, J. C. de Schipper, Baukje Schippers, P. Embregts, C. Schuengel
{"title":"Reducing restrictive measures in complex long-term care for people with intellectual disabilities: Implementation interventions through the lens of normalisation process theory","authors":"E. Bisschops, J. C. de Schipper, Baukje Schippers, P. Embregts, C. Schuengel","doi":"10.3109/13668250.2022.2044270","DOIUrl":"https://doi.org/10.3109/13668250.2022.2044270","url":null,"abstract":"ABSTRACT Background The multi-disciplinarity of long-term care for people with intellectual disabilities makes organisations seek stability and predictability, complicating implementing innovations. Interventions to implement a method for reducing restrictive measures were analysed through the lens of Normalisation Process Theory to understand the social mechanisms at play. Methods Process notes, collected during a trial in which a method to reduce restrictive measures was implemented, were analysed guided by implementation interventions defined by Cochrane Effective Practice and Organisation of Care Review Group. These interventions were mapped to social mechanisms of Normalisation Process Theory. Results Implementation interventions were widely used in which clients’ perspectives were expressed (client-related-interventions), and consensus processes were held with care professionals. These interventions initiated NPT’s social mechanisms’ Coherence, Cognitive Participation and Collective Action. Conclusions The emphasis on consensus and clients’ perspectives when methodically reducing restrictive measures reflects some unique implementation challenges in long-term intellectual disability care.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49286192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities 针对智力和其他发育障碍成年人的初步纵火犯罪链
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-13 DOI: 10.3109/13668250.2022.2037186
J. Collins, M. Barnoux, P. Langdon
{"title":"A preliminary firesetting offence chain for adults with intellectual and other developmental disabilities","authors":"J. Collins, M. Barnoux, P. Langdon","doi":"10.3109/13668250.2022.2037186","DOIUrl":"https://doi.org/10.3109/13668250.2022.2037186","url":null,"abstract":"ABSTRACT Background The theoretical understanding of firesetting behaviour has predominantly been developed with men in prisons or psychiatric hospitals without neurodevelopmental disabilities. Consequently, there is a lack of evidence regarding the validity of current theory when applied to adults with intellectual disabilities and/or autism. Method Thirteen adults in England with intellectual and other developmental disabilities were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Interviews were analysed using a Grounded Theory approach. Results The resulting model consists of four phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period. Conclusion The model accounts for unique precursors to firesetting including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the significance of post-offence behaviour and cognitions are highlighted.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48011574","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 4
The online lives of adolescents with mild or borderline intellectual disabilities in the Netherlands: Care staff knowledge and perceptions 荷兰轻度或边缘性智障青少年的网络生活:护理人员的知识和看法
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-06 DOI: 10.3109/13668250.2021.2004635
R. de Groot, H. Kaal, W. Stol
{"title":"The online lives of adolescents with mild or borderline intellectual disabilities in the Netherlands: Care staff knowledge and perceptions","authors":"R. de Groot, H. Kaal, W. Stol","doi":"10.3109/13668250.2021.2004635","DOIUrl":"https://doi.org/10.3109/13668250.2021.2004635","url":null,"abstract":"ABSTRACT\u0000 Background This study reports the findings from a Dutch study, exploring care workers’ knowledge and perceptions of the online lives of adolescents with mild or borderline intellectual disabilities. Method Using an inductive research design 33 semi-structured interviews were conducted with care workers. Results Three themes were derived from the data: (1) The clients’ online world is largely unknown to care workers. (2) The online world is a gateway to an inclusive and connected life. (3) The online world is a dangerous and challenging place. Conclusion Care workers have limited knowledge of clients’ online lives. Care workers show ambivalence about the good and bad of the Internet for their clients. They acknowledge the possibilities of the Internet but mostly perceive it as a place of risk and challenge. Paradoxically, care workers report little experiences of incidents of online risks. Perceptional processes might help explain why this paradox exists.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42891011","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 3
Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports 洛杉矶城市对COVID-19的自我倡导观点:对自主性和获得支持的影响
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-03-06 DOI: 10.3109/13668250.2022.2028379
Robin L Dodds, Karolyn J. Maurer, L. Montgomery, Sean Cutting, Courtney Jilek
{"title":"Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports","authors":"Robin L Dodds, Karolyn J. Maurer, L. Montgomery, Sean Cutting, Courtney Jilek","doi":"10.3109/13668250.2022.2028379","DOIUrl":"https://doi.org/10.3109/13668250.2022.2028379","url":null,"abstract":"ABSTRACT Background Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic. Method We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021. Results A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services. Conclusions Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44661389","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
The showcase of special education in Turkey: Guidance and research centres 土耳其特殊教育的展示：指导和研究中心
IF 1.3 4区 医学
Journal of Intellectual & Developmental Disability Pub Date : 2022-02-24 DOI: 10.3109/13668250.2021.2011173
Muhammed A. Karal, Neslihan Unluol Unal
{"title":"The showcase of special education in Turkey: Guidance and research centres","authors":"Muhammed A. Karal, Neslihan Unluol Unal","doi":"10.3109/13668250.2021.2011173","DOIUrl":"https://doi.org/10.3109/13668250.2021.2011173","url":null,"abstract":"ABSTRACT Background Identifying the students with intellectual disabilities and deciding the required services would not be sufficient without parental involvement. The purpose of this study was to understand the perspectives of the parents of students with intellectual disabilities about the Guidance and Research Centres (GRCs) and reveal the parents’ experiences at the GRCs. Method In this qualitative study, unstructured interviews were conducted. Twenty-one parents who had a child with an intellectual disability were asked about their experiences during their visit to the GRCs. Content analysis with an inductive approach was used to analyse the data. Findings Most of the parents reported problems regarding educational evaluation, and communication and collaboration. The participants provided their suggestions about evaluation procedures, professionalism, and institutional practices. Conclusions The problems at the GRCs must be considered by educators and other stakeholders to better provide educational evaluation, support services, and guidance to the students and their parents.","PeriodicalId":51466,"journal":{"name":"Journal of Intellectual & Developmental Disability","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46613670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
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