自闭症儿童的养育:质性研究的叙述回顾

E. Fradelos
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摘要

背景:照顾自闭症儿童是一项艰巨的任务,需要特殊的知识和特殊的教育。在治疗计划中,养育被诊断为自闭症谱系障碍的孩子的家庭的经历往往被忽视。目的:本系统综述的目的是探讨有自闭症儿童的家庭的经验。方法:系统回顾了通过自闭症家庭的生活经历来探讨自闭症体验的定性研究。结果与讨论:文献通过Medline, PubMed, PsycINFO数据库获取。已经出现了七个主要的主题单元,这些单元将有自闭症儿童的家庭的经历具体化。这些是:a)情感影响,对未来的恐惧和不安全感,b)对家庭生活的影响,c)教育,d)卫生利益的担忧,e)帮助和支持,f)适应。本研究通过父母养育自闭症儿童的经历来强调自闭症的生活经历。这些孩子的父母必须处理的最重要的问题之一是压力、对未来的恐惧和心理压力。很多时候,父母之间关系的破裂以及经济负担加剧了这些问题。所有这些负担都影响到家庭的和谐运作和儿童的健康,因为它们相互影响。这些父母面临着许多挑战,他们的日常生活是一场长期的接受和适应的斗争。结论:通过这些人的言语和经历,可以清楚地看到他们对社会心理支持和信息干预的需求。支持、教育和信息可以使父母具备知识、技能和信心来支持他们的孩子。
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Parenting an Autistic Child: a Narrative Review of Qualitative Studies
Background: Taking care of a child with autism is a difficult task, and requires special knowledge and special education. The experiences of families raising a child diagnosed with autism spectrum disorder are often neglected in the treatment plan. Objective: The purpose of this systematic review is to explore the experiences of families with a child with autism. Methods: A systematic review of the qualitative studies that have explored the experience of autism through the lived experience of families raising a child with autism has been implemented. Results and Discussion: The literature was acquired via the Medline, PubMed, PsycINFO databases. Seven major thematic units have emerged that crystallize the experience of families with a child on the autism spectrum. These are: a) emotional effects, fear and insecurity for the future, b) effects on family life, c) education, d) concerns of sanitary interest, e) help and support, f) adaptation. The present study highlights the lived experience of autism through the experiences of parents raising a child on the autism spectrum. One of the most important problems that the parents of these children have to deal with is stress, fear of the future, and psychological strain. Many times, these are intensified by the breakdown of the relationship between the parents as well as by the financial burden. All these burdens affect the harmonious functioning of the family and the health of the children as they mutually influence each other. These parents face many challenges, and their daily life is a long struggle of acceptance and adaptation. Conclusion: The need for psychosocial support and information interventions for these individuals is clearly seen through their words and experiences. Support, education, and information can equip parents with the knowledge, skills, and confidence to support their children.
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