Jordan University of Science and Technology, Irbid, Jordan.
King Abdullah University Hospital, Irbid, Jordan.
J Transcult Nurs. 2021 Sep;32(5):474-483. doi: 10.1177/1043659620970634. Epub 2020 Nov 5.
Parenting a child diagnosed with autism spectrum disorder (ASD) is challenging for mothers because of concerns related to behavior, difficulties in accessing specialized care, and lack of community acceptance, yet their stories in Jordanian context are still unknown. Common challenges in Jordan include financial burdens, lack of public awareness, and lack of specialized knowledge even among health care providers, which may lead to delays in obtaining the diagnosis and interventions for ASD.
A phenomenological descriptive approach was used to explore and understand the mothers' everyday lived experiences of raising a child with ASD. Semistructured interviews were conducted with 14 mothers to identify their challenges so that nurses can identify gaps in services, empower families, and facilitate optimum care to these Jordanian families.
The main themes that emerged were (1) mothers' journeys with the diagnosis, in which mothers recognized the abnormalities of their children, reported delays in getting the diagnosis and initiation of treatment, and described a wide range of reactions to the diagnosis from grief and guilt to a blessing from God; (2) the burden of care, by which mothers reported physical and emotional exhaustion, financial burdens, and concerns about the quality of available services; and (3) the consequences and the hurdle of having a child with ASD, which affected the family relationships and social life.
Jordanian mothers caring for children with ASD face several challenges, including physical, psychological, financial, and social challenges, in addition to limited specialized services. Identifying their unique challenges and needs are essential to support them, provide appropriate services and resources, and develop policies and guidelines for culturally competent quality services.
养育被诊断患有自闭症谱系障碍（ASD）的孩子对母亲来说是一项挑战，因为她们会担心孩子的行为问题、难以获得专业护理，以及社区对 ASD 的接纳度，而在约旦，这些母亲的故事却鲜为人知。约旦常见的挑战包括经济负担、公众意识缺乏，甚至包括医疗保健提供者在内的专业知识缺乏，这可能导致 ASD 的诊断和干预延迟。
采用现象学描述性方法来探索和理解母亲养育 ASD 儿童的日常体验。对 14 位母亲进行了半结构式访谈，以确定她们面临的挑战，以便护士能够发现服务中的差距，赋予家庭权力，并为这些约旦家庭提供最佳护理。
出现的主要主题包括：（1）母亲的诊断之旅，在这一主题中，母亲们认识到了孩子的异常，报告了诊断和治疗启动的延迟，并描述了从悲伤和内疚到上帝保佑的一系列对诊断的反应；（2）护理负担，母亲们报告了身体和情感上的疲惫、经济负担以及对现有服务质量的担忧；（3）有 ASD 儿童的后果和障碍，这影响了家庭关系和社会生活。
照顾 ASD 儿童的约旦母亲面临着多种挑战，包括身体、心理、经济和社会挑战，此外，专业服务也有限。确定她们的独特挑战和需求对于支持她们、提供适当的服务和资源以及制定文化上适应的高质量服务政策和指南至关重要。
