英国自闭症女儿的母亲对自闭症诊断可能带来的好处和限制的看法和经验

IF 2.5 4区 医学 Q2 HEALTH POLICY & SERVICES Journal of Policy and Practice in Intellectual Disabilities Pub Date : 2024-05-26 DOI:10.1111/jppi.12509
Mairi Evans, Chris Papadopoulos, John Burnham
{"title":"英国自闭症女儿的母亲对自闭症诊断可能带来的好处和限制的看法和经验","authors":"Mairi Evans,&nbsp;Chris Papadopoulos,&nbsp;John Burnham","doi":"10.1111/jppi.12509","DOIUrl":null,"url":null,"abstract":"<p>Whilst there is a growing body of research about autistic girls, much less is known about the experience of mothering an autistic girl, and the potential impact of the diagnosis. This study qualitatively explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter's diagnosis. A thematic analysis was applied with themes examined through the lens of the CMM LUUUUTT model to further explore the stories lived and told by the mothers. Eighteen themes linked to perceived affordances, perceived constraints/constraints of perception, experienced affordances and experienced constraints. Participants highlighted the impact of autism myths and stereotypes which influenced identification, referral, diagnosis and ongoing support for the girls. Myths and stereotypes told about autism also played a significant role in the mothers lived experience of the diagnosis. An affordance of diagnosis was a new understanding about their daughters' needs, which led to new parenting styles, letting go of blame and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as relationally transformative, challenges were described in accessing emotional or educational support for their daughter's post-assessment.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":2.5000,"publicationDate":"2024-05-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12509","citationCount":"0","resultStr":"{\"title\":\"Perceptions and experiences of UK-based mothers of autistic daughters in relation to the potential affordances and constraints of an autism diagnosis\",\"authors\":\"Mairi Evans,&nbsp;Chris Papadopoulos,&nbsp;John Burnham\",\"doi\":\"10.1111/jppi.12509\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>Whilst there is a growing body of research about autistic girls, much less is known about the experience of mothering an autistic girl, and the potential impact of the diagnosis. This study qualitatively explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter's diagnosis. A thematic analysis was applied with themes examined through the lens of the CMM LUUUUTT model to further explore the stories lived and told by the mothers. Eighteen themes linked to perceived affordances, perceived constraints/constraints of perception, experienced affordances and experienced constraints. Participants highlighted the impact of autism myths and stereotypes which influenced identification, referral, diagnosis and ongoing support for the girls. Myths and stereotypes told about autism also played a significant role in the mothers lived experience of the diagnosis. An affordance of diagnosis was a new understanding about their daughters' needs, which led to new parenting styles, letting go of blame and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as relationally transformative, challenges were described in accessing emotional or educational support for their daughter's post-assessment.</p>\",\"PeriodicalId\":47236,\"journal\":{\"name\":\"Journal of Policy and Practice in Intellectual Disabilities\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.5000,\"publicationDate\":\"2024-05-26\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12509\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Policy and Practice in Intellectual Disabilities\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/jppi.12509\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"HEALTH POLICY & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Policy and Practice in Intellectual Disabilities","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/jppi.12509","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEALTH POLICY & SERVICES","Score":null,"Total":0}
引用次数: 0

摘要

尽管有关自闭症女孩的研究越来越多,但人们对自闭症女孩母亲的经历以及诊断可能产生的影响却知之甚少。本研究对英国 12 位母亲的诊断历程进行了定性探索,以确定其女儿被诊断出患有自闭症的意义。本研究采用主题分析法,通过 CMM LUUUUTT 模型的视角对主题进行研究,以进一步探索母亲们生活和讲述的故事。18 个主题与感知到的负担能力、感知到的限制/感知到的限制、体验到的负担能力和体验到的限制相关联。参与者强调了自闭症神话和刻板印象的影响,这些神话和刻板印象影响了对女孩的识别、转诊、诊断和持续支持。关于自闭症的神话和刻板印象也对母亲的诊断生活体验产生了重要影响。诊断带来的一个好处是,她们对女儿的需求有了新的认识,从而形成了新的养育方式,放下了对女儿的责备,抵制了社会对养育方式的 "理所应当 "的看法。虽然诊断被视为关系上的转变,但她们也描述了在评估后为女儿获得情感或教育支持方面所面临的挑战。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Perceptions and experiences of UK-based mothers of autistic daughters in relation to the potential affordances and constraints of an autism diagnosis

Whilst there is a growing body of research about autistic girls, much less is known about the experience of mothering an autistic girl, and the potential impact of the diagnosis. This study qualitatively explored the diagnostic journey of 12 mothers in the UK to identify the meanings attributed to their daughter's diagnosis. A thematic analysis was applied with themes examined through the lens of the CMM LUUUUTT model to further explore the stories lived and told by the mothers. Eighteen themes linked to perceived affordances, perceived constraints/constraints of perception, experienced affordances and experienced constraints. Participants highlighted the impact of autism myths and stereotypes which influenced identification, referral, diagnosis and ongoing support for the girls. Myths and stereotypes told about autism also played a significant role in the mothers lived experience of the diagnosis. An affordance of diagnosis was a new understanding about their daughters' needs, which led to new parenting styles, letting go of blame and resisting perceived societal ‘oughtisms’ about how parenting should be. Whilst the diagnosis was seen as relationally transformative, challenges were described in accessing emotional or educational support for their daughter's post-assessment.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
4.10
自引率
5.90%
发文量
38
期刊最新文献
Issue Information Remote consultation: The experiences of community intellectual disability teams Advances and gaps in policy, practice, and research in transition for students with intellectual and developmental disabilities across four countries “It does change the narrative for health and social care” views of clinical and homeless service staff about the use of intellectual disability screening tools within homeless support pathways in the north of England Transitional challenges: Psychotropic medication and residential setting among young adults with intellectual disabilities
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1