“Yebo,这是一个巨大的解脱”:母亲如何经历孩子的自闭症诊断。

IF 1.3 Q4 HEALTH CARE SCIENCES & SERVICES African Journal of Disability Pub Date : 2023-01-01 DOI:10.4102/ajod.v12i0.1101
Mbalenhle N Manono, Mary G Clasquin-Johnson
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引用次数: 0

摘要

背景:有一个新兴的知识体系,从母亲的角度养育自闭症儿童的生活经验。母亲对孩子自闭症诊断的反应已被确定为影响孩子长期预后的关键因素。目的:本定性研究旨在探讨南非母亲如何体验其孩子的自闭症诊断。方法:对12名来自夸祖鲁-纳塔尔省的母亲进行电话访谈,了解她们在孩子被诊断为自闭症之前、期间和之后的经历。采用以非洲为中心的理论视角,根据乌班图、社会支持、文化、传统、人际关系、互联性和连续性的价值观对数据进行了主题分析,并与现有学术研究进行了比较。结果:被试具有强烈的文化和宗教信仰,影响了整个诊断过程。有些人等了很长时间,转而寻求传统治疗师或宗教领袖的帮助。虽然有些人在诊断后感到如释重负,因为至少有了孩子病情的名称,但他们也表示,意识到自闭症无法治愈,他们感到不知所措。随着时间的推移,母亲们的内疚感和焦虑感下降了,随着她们对孩子自闭症诊断意义的理解加深,她们变得越来越有弹性和力量,但许多人继续祈祷奇迹的发生。结论:未来的研究重点应放在如何在儿童自闭症诊断前、诊断中和诊断后三个阶段加强对母亲和孩子的支持。贡献:该研究强调了基于社区的宗教和文化组织在为被诊断为自闭症的母亲和她们的孩子提供适当支持方面的关键作用,与ubuntu、社会支持、文化、传统、人际关系、相互联系和连续性的价值观相一致。
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'Yebo, it was a great relief': How mothers experience their children's autism diagnoses.

Background: There is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. Mothers' reactions to their children's autism diagnoses have been identified as a key factor influencing their children's long-term outcomes.

Objectives: This qualitative study aimed to explore how South African mothers experience their children's autism diagnoses.

Method: Telephonic interviews were conducted with 12 mothers from KwaZulu-Natal to understand their experiences prior, during and following their children's autism diagnoses. The data were analysed thematically according to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an Afrocentric theoretical lens.

Results: The participants held strong cultural and religious beliefs which influenced the entire diagnosis process. Some, who waited a long time, turned to traditional healers or religious leaders. While some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child's condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. Over time, mothers' feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children's autism diagnosis deepened, but many continued to pray for a miracle.

Conclusion: Future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children's autism diagnoses.

Contribution: The study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity.

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来源期刊
African Journal of Disability
African Journal of Disability HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.10
自引率
5.90%
发文量
50
审稿时长
20 weeks
期刊介绍: The African Journal of Disability, the official journal of CRS, AfriNEAD and CEDRES, introduce and discuss issues and experiences relating to and supporting the act of better understanding the interfaces between disability, poverty and practices of exclusion and marginalisation. Its articles yield new insight into established human development practices, evaluate new educational techniques and disability research, examine current cultural and social discrimination, and bring serious critical analysis to bear on problems shared across the African continent. Emphasis is on all aspects of disability particularity in the developing African context. This includes, amongst others: -disability studies as an emerging field of public health enquiry -rehabilitation, including vocational and community-based rehabilitation -community development and medical issues related to disability and poverty -disability-related stigma and discrimination -inclusive education -legal, policy, human rights and advocacy issues related to disability -the role of arts and media in relation to disability -disability as part of global Sustainable Development Goals transformation agendas -disability and postcolonial issues -globalisation and cultural change in relation to disability -environmental and climate-related issues linked to disability -disability, diversity and intersections of identity -disability and the promotion of human development.
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