Sarosha Pillay, Madeleine Duncan, Petrus J. de Vries
{"title":"我们等了又等\"--护理人员对南非西开普省自闭症谱系障碍服务的看法。","authors":"Sarosha Pillay, Madeleine Duncan, Petrus J. de Vries","doi":"10.1111/camh.12704","DOIUrl":null,"url":null,"abstract":"<div>\n \n <section>\n \n <h3> Introduction</h3>\n \n <p>Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>The main theme that emerged was ‘We wait and we wait’. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, ‘The costs of waiting’ describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category ‘Barriers while waiting’ describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category ‘Expecting action’ describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.</p>\n </section>\n </div>","PeriodicalId":49291,"journal":{"name":"Child and Adolescent Mental Health","volume":"29 2","pages":"145-153"},"PeriodicalIF":6.8000,"publicationDate":"2024-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/camh.12704","citationCount":"0","resultStr":"{\"title\":\"‘We wait and we wait’—caregiver perspectives on autism spectrum disorder services in the Western Cape Province of South Africa\",\"authors\":\"Sarosha Pillay, Madeleine Duncan, Petrus J. de Vries\",\"doi\":\"10.1111/camh.12704\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n <section>\\n \\n <h3> Introduction</h3>\\n \\n <p>Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>The main theme that emerged was ‘We wait and we wait’. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, ‘The costs of waiting’ describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category ‘Barriers while waiting’ describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category ‘Expecting action’ describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.</p>\\n </section>\\n </div>\",\"PeriodicalId\":49291,\"journal\":{\"name\":\"Child and Adolescent Mental Health\",\"volume\":\"29 2\",\"pages\":\"145-153\"},\"PeriodicalIF\":6.8000,\"publicationDate\":\"2024-03-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/camh.12704\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Child and Adolescent Mental Health\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/camh.12704\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Child and Adolescent Mental Health","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/camh.12704","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PEDIATRICS","Score":null,"Total":0}
‘We wait and we wait’—caregiver perspectives on autism spectrum disorder services in the Western Cape Province of South Africa
Introduction
Caregivers of children with autism face significant challenges in navigating health, education and other systems of care to ensure appropriate services for their children. In South Africa, for example, many children with autism are reported to be out of schools and waiting long periods for specialist school placements thus adding to the burden of care for caregivers and raising many questions about equity, diversity and inclusion.
Methods
Here we performed a qualitative study using focus groups to collect data on the perspectives of caregivers of children with autism waiting for school placement in the Western Cape Province of South Africa. We asked families about their experiences of current autism services and for suggestions to improve service delivery.
Results
The main theme that emerged was ‘We wait and we wait’. Caregivers expressed high levels of frustration with existing autism educational and other services. Perspectives about services were captured under three categories. The first category, ‘The costs of waiting’ describes the socioemotional, financial and time costs associated with having a child with autism wait for educational services. The second category ‘Barriers while waiting’ describes the attitudinal, structural, process and communication barriers experienced by caregivers while seeking services for their children. The final category ‘Expecting action’ describes attitudinal, service and policy expectations that caregivers felt could improve service delivery. Caregivers provided 10 recommendations for autism service improvements.
Conclusion
Caregivers of children with autism waiting for educational services in the Western Cape Province of South Africa expressed dissatisfaction with existing services. Efforts to find solutions to providing services and support to children with autism waiting for educational services and their caregivers should be prioritized.
期刊介绍：
Child and Adolescent Mental Health (CAMH) publishes high quality, peer-reviewed child and adolescent mental health services research of relevance to academics, clinicians and commissioners internationally. The journal''s principal aim is to foster evidence-based clinical practice and clinically orientated research among clinicians and health services researchers working with children and adolescents, parents and their families in relation to or with a particular interest in mental health. CAMH publishes reviews, original articles, and pilot reports of innovative approaches, interventions, clinical methods and service developments. The journal has regular sections on Measurement Issues, Innovations in Practice, Global Child Mental Health and Humanities. All published papers should be of direct relevance to mental health practitioners and clearly draw out clinical implications for the field.
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