父母接受孤独症儿童诊断经历质性研究的系统评价

doi:10.16460/j.issn1008-9969.2021.09.035

摘要/Abstract

摘要： 目的系统评价父母接受孤独症儿童诊断的体验与感受,为建立完善的父母支持系统提供指导。方法系统检索PubMed、CINAHL、PsycINFO、the Cochrane Library、Web of Science、EMBASE、中国知网、维普期刊数据库、中国生物医学文献数据库以及万方数据知识服务平台数据库,检索时限为建库至2020年8月,搜集关于父母接受孤独症儿童诊断经历的质性研究,并进行质量评价,结果整合。结果共纳入11项研究,提炼41个研究结果,归纳总结后形成12个类别,3个整合结果：情感体验、信息需求以及获得支持。结论政府及医疗保健人员应重视不同阶段父母对孤独症儿童诊断过程的感受与需求,给予医疗及政策支持,改善父母处境。

关键词: 孤独症, 诊断, 质性研究, 系统评价

Abstract: Objective To systematically review parents’ experiences of diagnostic process for children with autism spectrum disorder, and to provide guidance for estabishing a better parental support system. Methods Qualitative studies on parents’ experiences of diagnostic process for children with autism spectrum disorder from databases, including PubMed, CINAHL, PsycINFO, the Cochrane Library, Web of Science, EMBASE, CNKI, VIP, CBM and Wanfang data, were retrieved from the inception to August 2020. The quality of included studies was evaluated based on the Critical Appraisal Skills Programme for qualitative studies. Results A total of 11 studies were included; 41 research results were extracted and 12 categories were summarized. Thematic synthesis identified 3 core themesemotional experience, information needs and support. Conclusion The government and health care workers should pay attention to the feelings and needs of parents during the diagnosis process of children with autism spectrum disorder, and give medical and policy support to improve the situation of parents.

Key words: autism, diagnosis, qualitative research, systematic review

中图分类号:

R473.74

程爽, 熊振芳, 蔡艺, 陈涵彬, 惠靖瑞. 父母接受孤独症儿童诊断经历质性研究的系统评价[J]. 护理学报, 2021, 28(9): 35-42.

CHENG Shuang, XIONG Zhen-fang, CAI Yi, CHEN Han-bin, HUI Jing-rui. Qualitative Studies on Parents’ Experiences of Diagnostic Process for Children with Autism Spectrum Disorder: A Systematic Review[J]. Journal of Nursing, 2021, 28(9): 35-42.

参考文献

[1] 马晨欢,王瑜.孤独症谱系障碍儿童的早期干预方法研究进展[J].中国儿童保健杂志,2020,28(1):57-60.DOI:10.11852/zgetbjzz2019-0614.
[2] Maenner MJ, Shaw KA, Baio J, et al.Prevalence of Autism Spectrum Disorder among Children Aged 8 Years-autism and Developmental Disabilities Monitoring Network,11 Sites,United States,2016[J].MMWR Surveill Summ,2020,69(4):1-12.DOI:10.15585/mmwr.ss6904a1.
[3] Hartley SL,Schultz HM.Support Needs of Fathers and Mothers of Children and Adolescents with Autism Spectrum Disorder[J].J Autism Dev Disord,2015, 45(6):1636-1648.DOI:10.1007/s10803-014-2318-0.
[4] Feinberg E,Augustyn M,Fitzgerald E,et al.Improving Maternal Mental Health after a Child’s Diagnosis of Autism Spectrum Disorder:Results from a Randomized Clinical Trial[J].JAMA Pediatr,2014, 168(1):40-46.DOI:10.1001/jamapediatrics.2013.3445.
[5] Corcoran J, Berry A, Hill S.The Lived Experience of US Parents of Children with Autism Spectrum Disorders:A Systematic Review and Meta-synthesis[J].JIntellect Disabil,2015,19(4):356-366.DOI:10.1177/1744629515577876.
[6] Shorey S, Ng ED, Haugan G,et al.The Parenting Experiences and Needs of Asian Primary Caregivers of Children with Autism:A Meta-synthesis[J]. Autism,2020,24(3):591-604.DOI:10.1177/1362361319886513.
[7] Boshoff K, Gibbs D, Phillips RL,et al.A Meta-synthesis of How Parents of Children with Autism Describe Their Experience of Advocating for Their Children During the Process of Diagnosis[J]. Health Soc Care Community, 2019,27(4):e143-e157.DOI:10.1111/hsc.12691.
[8] Legg H, Tickle A.UK Parents’Experiences of Their Child Receiving a Diagnosis of Autism Spectrum Disorder:A Systematic Review of the Qualitative Evidence[J].Autism,2019,23(8):1897-1910.DOI:10.1177/1362361319841488.
[9] 胡雁. 循证护理学[M].北京:人民卫生出版社,2017:130-134.
[10] Abbott M,Bernard P,Forge J.Communicating a Diagnosis of Autism Spectrum Disorder-A Qualitative Study of Parents’Experiences[J]. Clin Child Psychol Psychiatry,2013,18(3):370-382.DOI:10.1177/1359104512455813.
[11] Braiden HJ, Bothwell J, Duffy J.Parents’Experience of the Diagnostic Process for Autistic Spectrum Disorders[J].Child Care in Practice,2010,16(4):377-389. DOI:10.1080/13575279.2010.498415.
[12] Midence K,O"Neill M.The Experience of Parents in the Diagnosis of Autism a Pilot Study[J].Autism,1999,3(3):273-285.DOI:10.1177/1362361399003003005.
[13] Chao KY,Chang HL,Chin WC,et al.How Taiwanese Parents of Children with Autism Spectrum Disorder Experience the Process of Obtaining a Diagnosis:A Descriptive Phenomenological Analysis[J]. Autism,2018,22(4):388-400.DOI:10.1177/1362361316680915.
[14] Carlsson E, Miniscalco C,Kadesjö B,et al.Negotiating Knowledge:Parents’ Experience of the Neuropsychiatric Diagnostic Process for Children with Autism[J].IntJLang Commun Disord,2016,51(3):328-338.DOI:10.1111/1460-6984.12210.
[15] Jacobs D, Steyaert J,Dierickx K,et al.Parents’ Views and Experiences of the Autism Spectrum Disorder Diagnosis of Their Young Child:A Longitudinal Interview Study[J].Eur Child Adolesc Psychiatry,2020, 29(8):1143-1154.DOI:10.1007/s00787-019-01431-4.
[16] Ryan S,Salisbury H.‘You Know What Boys are Like’:Pre-diagnosis Experiences of Parents of Children with Autism Spectrum Conditions[J].BrJGen Pract,2012,62(598):378-383.DOI:10.3399/bjgp12X641500.
[17] Russell G, Norwich B.Dilemmas,Diagnosis and Destigmatization:Parental Perspectives on the Diagnosis of Autism Spectrum Disorders[J].Clin Child Psychol Psychiatry,2012,17(2):229-245.DOI:10.1177/1359104510365203.
[18] Mswrsw JM, Bswmsw MC, Mswrsw BG, et al.Transparency,Hope,and Empowerment:A Model for Partnering with Parents of a Child with Autism Spectrum Disorder at Diagnosis and Beyond[J].Soc Work Ment Health,2012, 10(4):311-330.DOI:10.1080/15332985.2012.664487.
[19] Johnson NL, Krueger W, Jilek E,et al.Conversations with Health Care Providers and Parents before Autism Diagnosis:A Qualitative Study[J].J Pediatr Health Care,2020,34(5):453-461.DOI:10.1016/j.pedhc.2020.05.002.
[20] Rasmussen PS,Pedersen IK,Pagsberg AK.Biographical Disruption or Cohesion?:How Parents Deal with Their Child’s Autism Siagnosis[J]. Soc Sci Med, 2020,244(1):112673.DOI:10.1016/j.socscimed.2019.112673.
[21] Crane L,Chester JW,Goddard L,et al.Experiences of Autism Siagnosis:A Survey of over 1000 Parents in the United Kingdom[J].Autism,2016, 20(2):153-62.DOI:10.1177/1362361315573636.
[22] DesChamps TD, Ibañez LV, Edmunds SR, et al.Parenting Stress in Caregivers of Young Children with ASD Concerns Prior to a Formal Diagnosis[J].Autism Res,2020,13(1):82-92.DOI:10.1002/aur.2213.
[23] Hennel S,Coates C, Symeonides C,et al.Diagnosing Autism:Contemporaneous Surveys of Parent Needs and Paediatric Practice[J].JPaediatr Child Health,2016,52(5):506-511.DOI:10.1111/jpc.13157.
[24] Pejovic MM, Stankovic M,Mitkovic VM,et al.Perceptions on Support, Challenges and Needs among Parents of Children with Autism:the Serbian Experience[J]. Psychiatr Danub,2018,30(6):354-364.
[25] Pearson JN,Meadan H,Malone KM,et al.Parent and Professional Experiences Supporting African-American Children with Autism[J].J Racial Ethn Health Disparities,2020,7(2):305-315.DOI:10.1007/s40615-019-00659-9.
[26] French L,Kennedy EMM.Annual Research Review:Early Intervention for Infants and Young Children with,or at-risk of,Autism Spectrum Disorder:A Systematic Review[J].J Child Psychol Psychiatry,2018,59(4):444-456.DOI:10.1007/s40615-019-00659-9.?
[27] 陈媛媛,代惠英,张伟.孤独症谱系障碍患儿实施引导式教育的效果观察[J].护理学报,2019,26(13):66-69.DOI:10.16460/j.issn1008-9969.2019.13.066.
[28] 程艳然,熊振芳,贺安妮.基于多元智能理论的自闭症儿童个性化干预实践[J].护理学报,2018,25(1):62-64.DOI:10.16460/j.issn1008-9969.2018.01.062.
[29] Elder JH, Kreider CM,Brasher SN,et al.Clinical Impact of Early Diagnosis of Autism on the Prognosis and Parent-Child Relationships[J]. Psychol Res Behav Manag,2017,24(10):283-292.DOI:10.2147/PRBM.S117499.

Metrics

Viewed

Full text

Abstract

Cited

Shared