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首页> 外文学位 >'Too normal to be different, too different to be normal' Social support needs of parents who have a child with high functioning autism.
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'Too normal to be different, too different to be normal' Social support needs of parents who have a child with high functioning autism.

机译：“太过正常而与众不同，太过不同而又非正常”育有高自闭症儿童的父母的社会支持需求。

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摘要

The aim of the study was to explore and describe the social support needs of parents living with a child with high functioning Autism (HFA) or Asperger's Syndrome in Prince Edward Island (PEI). Parents in PEI who have children who have been diagnosed with HFA may experience geographical and social inequities that exclude them from the social support that they require to effectively manage their child's disorder. The study was based on the premise that parents who have children with HFA require unique and specific supports. Living in PEI means these parents may not have access to supports for autism found in other provinces. The supports available to all children with autism in PEI are limited. Because their needs are often perceived as less than parents of children with low functioning autism, the available supports are prioritized to parents with children who have low functioning autism; therefore, the support provided to parents of children with HFA may be inadequate to meet their needs. The study design is based on a qualitative interpretative description methodology. Eight parents were recruited to participate in semi-structured interviews (four mothers and four fathers). Following the individual interviews parents were asked to participate in a group interview to validate the individual interview findings.;Several themes emerged from the data. In all cases parents lacked emotional, instrumental, informational and affirmational types of support. Parents struggled with the diagnosis experience, finding it difficult to get their children diagnosed and difficult to obtain information about autism following the diagnosis. Following the diagnosis experience, parents assumed parental roles that were unique to parenting a child with special needs (such as parent as researcher, therapist, advocate). For the most part, these roles were done without any formal support. Parents faced many challenges, such as parenting a child with an "invisable disability". Because their child looked "normal" parents were often made to feel as though they were "bad parents" when their children displayed unusual or bad behaviour. Many of the findings from the study pointed to the fact that these parents and their children represented a vulnerable population. The findings from this research may be used to guide the development of future social support interventions for parents of children with HFA, and possibly further research on this topic.
机译：该研究的目的是探讨和描述父母与有高功能自闭症（HFA）或爱德华王子岛（PEI）的阿斯伯格综合症的孩子一起生活的父母的社会支持需求。在PEI中，有被诊断患有HFA的孩子的父母可能会遇到地理和社会上的不平等现象，这使他们无法获得有效管理孩子的疾病所需的社会支持。该研究基于这样一个前提，即有HFA子女的父母需要独特而具体的支持。住在PEI中意味着这些父母可能无法获得其他省份自闭症的抚养费。 PEI中所有自闭症儿童可获得的支持有限。由于通常认为他们的需求少于自闭症低功能儿童的父母，因此可用的支持优先于有自闭症低功能儿童的父母。因此，向HFA儿童父母提供的支持可能不足以满足他们的需求。研究设计基于定性的解释性描述方法。招募了八位父母参加半结构化访谈（四位母亲和四位父亲）。在个人访谈之后，要求父母参加小组访谈以验证个人访谈的结果。数据中出现了几个主题。在所有情况下，父母都缺乏情感，工具，信息和肯定性的支持。父母们在诊断经验上苦苦挣扎，发现难以对孩子进行诊断，并且难以在诊断后获得有关自闭症的信息。根据诊断经验，父母承担的父母角色对于育有特殊需要的孩子（例如研究者，治疗师，监护人的父母）而言是独特的。在大多数情况下，这些角色是在没有任何正式支持的情况下完成的。父母面临许多挑战，例如为有“隐形残疾”的孩子做父母。因为他们的孩子看上去“正常”，所以当他们的孩子表现出异常或不良行为时，他们常常被当作“坏父母”。该研究的许多发现都指出，这些父母及其子女是弱势群体。这项研究的结果可用于指导未来针对HFA儿童父母的社会支持干预措施的发展，并可能对此主题进行进一步的研究。

著录项

  • 作者

    Wright, Kelley M.;

  • 作者单位

    University of New Brunswick (Canada).;

  • 授予单位 University of New Brunswick (Canada).;
  • 学科 Health Sciences Nursing.
  • 学位 M.N.
  • 年度 2008
  • 页码 116 p.
  • 总页数 116
  • 原文格式 PDF
  • 正文语种 eng
  • 中图分类
  • 关键词

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