{"title":"葡萄牙父母的自闭症诊断经验与父母压力","authors":"Genta Kulari, Giulia Francisca Sarantakos Cordeiro","doi":"10.1108/aia-08-2023-0046","DOIUrl":null,"url":null,"abstract":"Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":"59 7","pages":"0"},"PeriodicalIF":1.1000,"publicationDate":"2023-10-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Autism diagnosis experience and parental stress among Portuguese parents\",\"authors\":\"Genta Kulari, Giulia Francisca Sarantakos Cordeiro\",\"doi\":\"10.1108/aia-08-2023-0046\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.\",\"PeriodicalId\":43640,\"journal\":{\"name\":\"Advances in Autism\",\"volume\":\"59 7\",\"pages\":\"0\"},\"PeriodicalIF\":1.1000,\"publicationDate\":\"2023-10-31\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Advances in Autism\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1108/aia-08-2023-0046\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"PSYCHOLOGY, DEVELOPMENTAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Advances in Autism","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1108/aia-08-2023-0046","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"PSYCHOLOGY, DEVELOPMENTAL","Score":null,"Total":0}
Autism diagnosis experience and parental stress among Portuguese parents
Purpose This study aims to examine the impact that diagnostic factors such as duration of diagnostic period, number of professionals consulted and perceived social support have on parental stress during the diagnostic process of autism spectrum disorder (ASD). Design/methodology/approach Forty parents of 2–18 year-old children/adolescents with a formal ASD diagnosis recruited from five specialized private clinics in Lisbon completed a survey which included diagnostic questionnaire, parental stress scale and social support scale from April to December 2022. Findings Data analysis indicated that the mean age of the diagnosis was 5.6 years with a delay of 3.95 years from first concern until final diagnosis. On average, parents consulted a mean of 3.62 professionals. Other findings indicated that as age of parents increased, levels of parental stress decreased. Parents with higher levels of social support had lower levels of parental stress. Furthermore, higher age of child at first concern predicted higher affective social support. Originality/value This study reflects on the experience of obtaining the ASD diagnosis in Portugal, raising awareness on the importance of providing early detection and social support for distressed parents.
期刊介绍:
Advances in Autism is unique in its focus on the health and care aspects and outcomes for people with autism. The journal''s content is international in focus and peer-reviewed. It includes the following: research-based articles evidence-based clinical and support articles articles on policy and advances in services where these can be internationally applied. Key areas of research covered include: clinical developments people''s experience through qualitative research policy debates and outcomes inclusion and quality of life developmental issues population and epidemiological studies services developments evidence-based reviews of key practice issues.