{"title":"随着时间的流逝,家庭生活质量会越来越好吗?澳大利亚早期和学龄残疾儿童的比较混合方法研究","authors":"Anoo Bhopti, Ted Brown, Primrose Lentin","doi":"10.1111/jppi.12433","DOIUrl":null,"url":null,"abstract":"<p>This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school-aged children with disability. It examined the relationships between disability-related services, parent occupations, and FQOL. Two mixed-methods studies with 122 participants and 24 in-depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school-aged children with disability. The quantitative aspect (<i>N</i> = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two-way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school-aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long-term well-being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family-centered care and supportive practitioners assist FQOL and are highly recommended.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"379-395"},"PeriodicalIF":2.5000,"publicationDate":"2022-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12433","citationCount":"1","resultStr":"{\"title\":\"Does family quality of life get better as the years go by? A comparative mixed-methods study between early years and school-aged children with disability in Australia\",\"authors\":\"Anoo Bhopti, Ted Brown, Primrose Lentin\",\"doi\":\"10.1111/jppi.12433\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school-aged children with disability. It examined the relationships between disability-related services, parent occupations, and FQOL. Two mixed-methods studies with 122 participants and 24 in-depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school-aged children with disability. The quantitative aspect (<i>N</i> = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two-way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school-aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long-term well-being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family-centered care and supportive practitioners assist FQOL and are highly recommended.</p>\",\"PeriodicalId\":47236,\"journal\":{\"name\":\"Journal of Policy and Practice in Intellectual Disabilities\",\"volume\":\"19 4\",\"pages\":\"379-395\"},\"PeriodicalIF\":2.5000,\"publicationDate\":\"2022-06-25\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12433\",\"citationCount\":\"1\",\"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.12433\",\"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.12433","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: 1
摘要
这项澳大利亚的研究比较了学龄前儿童父母参加早期儿童干预服务(ECIS)和学龄残疾儿童父母的家庭生活质量(FQOL)观点。它检查了残疾相关服务、父母职业和FQOL之间的关系。两项混合方法研究共涉及122名参与者和24次深度访谈。第一项研究包括72名参加ECIS的家长。第二项研究包括50名学龄残疾儿童的父母。定量方面(N = 122)采用Beach Center FQOL调查和人口统计问卷。每项研究进行了12次半结构化访谈。每项研究都使用定量数据分析的Spearmann's Rho相关和定性数据的专题分析。进行了双向方差分析和定性比较分析,以比较两项研究的结果。结果显示,与ECIS组相比,学龄儿童家长的FQOL得分较低。失去工作、没有时间照顾照顾者的健康、缺乏休息和临时住宿护理对父母的长期健康产生不利影响。结果表明,随着儿童年龄的增长,照顾的困难和挑战增加;然而,积极的适应、信念和积极的转变有助于FQOL。以家庭为中心的护理和支持性从业人员有助于FQOL,强烈推荐。
Does family quality of life get better as the years go by? A comparative mixed-methods study between early years and school-aged children with disability in Australia
This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school-aged children with disability. It examined the relationships between disability-related services, parent occupations, and FQOL. Two mixed-methods studies with 122 participants and 24 in-depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school-aged children with disability. The quantitative aspect (N = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two-way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school-aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long-term well-being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family-centered care and supportive practitioners assist FQOL and are highly recommended.