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Construction of Support Services List for Parents of Children with Autism Based on“Timing It Right”Theory

  

  1. 1.Department of Interdiscipline in School of Nursing,Peking University,Beijing 100191,China 2.Biological Psychiatry Lab,Peking University Sixth Hospital/Peking University Institute of Mental Health/NHC Key Laboratory of Mental Health(Peking University)/National Clinical Research Center for Mental Disorders(Peking University Sixth Hospital),Beijing 100191,China 3.Department of Child psychiatry,Peking University Sixth Hospital/Peking University Institute of Mental Health/NHC Key Laboratory of Mental Health(Peking University)/National Clinical Research Center for Mental Disorders(Peking University Sixth Hospital),Beijing 100191,China 4.Department of Medicine and Surgery Nursing in School of Nursing,Peking University,Beijing 100191,China 5.Secretariat,Beijing Rehabilitation Association for Children with Autism,Beijing 100191,China
  • Received:2025-02-17 Accepted:2025-03-18
  • Contact: YUE Weihua,Professor;E-mail:dryue@bjmu.edu.cn

孤独症谱系障碍儿童父母支持服务清单的构建:基于时机理论

  

  1. 1.100191 北京市,北京大学护理学院跨学科教研室 2.100191 北京市,北京大学第六医院 北京大学精神卫生研究所 国家卫生健康委员会精神卫生学重点实验室(北京大学)国家精神心理疾病临床医学研究中心(北京大学第六医院)生物精神病学研究室 3.100191 北京市,北京大学第六医院 北京大学精神卫生研究所 国家卫生健康委员会精神卫生学重点实验室(北京大学)国家精神心理疾病临床医学研究中心(北京大学第六医院)儿童精神科 4.100191 北京市,北京大学护理学院内外科教研室 5.100191 北京市孤独症儿童康复协会秘书处
  • 通讯作者: 岳伟华,主任医师/教授;E-mail:dryue@bjmu.edu.cn
  • 基金资助:
    北京大学护理学科科研发展基金(TYZH2023002)

Abstract: Background Parents of children with autism have multi-dimensional support service needs such as information,emotion,and skills,and the support service needs are constantly changing. Objective To development a systematic supportive service checklist for parents of children with autism based on “Timing It Right” theory. Methods From January 2024 to February 2025,based on the summarized key points of support services from evidence synthesis and “Timing It Right” theory,combined with the qualitative research results of parental support service needs and the survey results of parents of children with autism,the first draft of the checklist was preliminarily formulated. The Delphi method was used to select 23 experts nationwide in China for two rounds of expert consultation,and the final draft of the list was formed after revising the content of the first draft according to the experts' opinions. Results In the two rounds of expert consultation,23 and 20 questionnaires were distributed,and 20 and 20 valid questionnaires were recovered. The response rates in two rounds of expert consultation were 86.96% and 100.00% respectively,and the expert authority coefficients were 0.874 and 0.878 respectively. The average score of the five first-level items in the second round of expert consultation was 4.74-5.00 points,the average score of the 20 second-level items was 4.42-5.00 points,and the average score of the 63 third-level items was 4.50-5.00 points. The final version of checklist of supportive service checklist for parents of children with autism included five first-level items including event/diagnosis,stabilization,preparation,implementation and adaptation phases,20 second-level items and 63 third-level items. Conclusion This study formed a supportive service checklist for parents of children with autism. The process of forming the checklist is scientific and reliable,which can provide a reference for clinical medical staff to carry out support services for parents of children with autism in different stages and dimensions,but the practical application effect still needs to be further verified.

Key words: Autism spectrum disorder, Child, Parents, “Timing It Right” theory, List of support services, Delphi method

摘要: 背景 孤独症谱系障碍(ASD)儿童父母具有信息、情感和技能等多维度、复杂的支持服务需求,且随着时间不断发生变化,目前缺少ASD儿童父母支持的本土化工具。目的 基于时机理论构建系统化、规范化的ASD儿童父母支持服务清单。方法 于2024年1月—2025年2月,以时机理论为基础,基于指南系统评价、质性研究整合和儿童父母问卷调查,初步制订ASD儿童父母支持服务清单初稿。采用德尔菲法遴选23名ASD医疗、康复和护理等领域专家,通过电子问卷的方式进行2轮问卷函询,采用SPSS25.0软件对函询结果进行统计学分析。经过2轮专家函询修订ASD儿童父母支持服务清单初稿,形成服务清单最终版。结果 2轮专家函询分别发放问卷23份、20份,分别回收有效问卷20份、20份,问卷有效回收率分别为86.96%、100.00%;专家权威系数分别为0.874和0.878。第2轮专家咨询中,专家对5个一级条目的重要性赋值均数为4.74~5.00分,对20个二级条目的重要性赋值均数为4.42~5.00分,对62个三级条目的重要性赋值均数为4.50~5.00分。最终构建的ASD儿童父母支持服务清单包括诊断期、稳定期、准备期、调整期和适应期5项一级条目,20项二级条目和62项三级条目。结论 本研究构建的ASD儿童父母支持服务清单形成过程具有科学性和可靠性,内容充实,并且形成了针对儿童父母分阶段、分维度的支持服务条目,能够为临床医护人员全面、分阶段地对儿童父母开展支持服务提供参考,但实际应用效果仍有待进一步验证。

关键词: 孤独症谱系障碍, 儿童, 父母, 时机理论, 支持服务清单, 德尔菲法

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