Caregiver-centred empowerment for families raising autistic children: A qualitative case study from Argentina.

IF 5.2 2区心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Autism Pub Date : 2024-11-01 Epub Date: 2024-03-18 DOI:10.1177/13623613241238254

Zsófia Szlamka, Cukier Sebastián, Charlotte Hanlon, Rosa A Hoekstra

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Abstract

Lay abstract: Caregivers of children with developmental disabilities, including autism, often struggle to access services, information and resources in Argentina. Little is known about how caregivers can be empowered to support their children as they wish to in the Argentinian setting. We spoke with 32 people online to understand existing and potential practices of supporting caregivers. The people we spoke with included caregivers, health service providers, non-governmental organisations' representatives providing services or technical support, special education teachers and policy representatives. Participants said that poverty, and inequalities in accessing support, impact how caregivers can support their children. They mentioned examples that help caregivers feel empowered, such as peer support groups and caregiver training. Many caregivers spoke about how they became advocates for their children and how they developed initiatives such as advocacy campaigns and well-being support groups. Caregivers in Argentina may be empowered in various ways, and the following strategies can improve empowerment: strengthening collaboration between professionals and caregivers; focusing on caregiver mental health; and addressing the profound impact of poverty on the quality of life of families.

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以照料者为中心的自闭症儿童家庭赋权：阿根廷的定性案例研究。

内容提要：在阿根廷，包括自闭症在内的发育障碍儿童的照顾者往往很难获得服务、信息和资源。在阿根廷的环境中，如何增强照顾者的能力，使他们能够按照自己的意愿为孩子提供支持，人们对此知之甚少。我们在网上与 32 人进行了交谈，以了解支持照顾者的现有和潜在做法。我们采访的对象包括照顾者、医疗服务提供者、提供服务或技术支持的非政府组织代表、特殊教育教师和政策代表。与会者表示，贫困和在获得支持方面的不平等影响了照顾者如何支持他们的孩子。他们提到了一些能帮助照顾者感到自己有能力的例子，如同伴支持小组和照顾者培训。许多照顾者谈到了他们如何成为子女的代言人，以及他们如何开展宣传活动和福利支持小组等活动。阿根廷的照护者可以通过各种方式增强自己的能力，以下战略可以提高他们的能力：加强专业人员与照护者之间的合作；关注照护者的心理健康；解决贫困对家庭生活质量的深远影响。

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来源期刊

Autism PSYCHOLOGY, DEVELOPMENTAL-

CiteScore

9.80

自引率

11.50%

发文量

160

期刊介绍： Autism is a major, peer-reviewed, international journal, published 8 times a year, publishing research of direct and practical relevance to help improve the quality of life for individuals with autism or autism-related disorders. It is interdisciplinary in nature, focusing on research in many areas, including: intervention; diagnosis; training; education; translational issues related to neuroscience, medical and genetic issues of practical import; psychological processes; evaluation of particular therapies; quality of life; family needs; and epidemiological research. Autism provides a major international forum for peer-reviewed research of direct and practical relevance to improving the quality of life for individuals with autism or autism-related disorders. The journal''s success and popularity reflect the recent worldwide growth in the research and understanding of autistic spectrum disorders, and the consequent impact on the provision of treatment and care. Autism is interdisciplinary in nature, focusing on evaluative research in all areas, including: intervention, diagnosis, training, education, neuroscience, psychological processes, evaluation of particular therapies, quality of life issues, family issues and family services, medical and genetic issues, epidemiological research.