PDF(Pubmed)
Abstract：
BACKGROUND: Parents of children on the autism spectrum often face great challenges in the care of their child. Early support tailored to families\' individual needs is therefore crucial for the development and quality of life of both children on the autism spectrum and their families. However, to date it is unclear whether the support available meets the parents\' needs.
OBJECTIVE: To investigate how the system of care, support, and therapies for children on the autism spectrum is perceived by their parents.
METHODS: A total of 57 parents of Swiss children on the autism spectrum participated in an online survey, and 20 of them participated in additional semi-structured interviews.
RESULTS: We found that parents of children on the autism spectrum may face substantial challenges and that social support is essential. Two thirds of the participating parents reported a long and difficult diagnostic process as challenging, and 60% expressed their need for closer follow-up after diagnosis and more support. Only one third of the parents stated that they manage their everyday lives well, whereas 17.5% felt exhausted, and more than half of the parents responded that they felt challenged. One fifth indicated that they had poor family support, and half reported substantial financial challenges. At the same time, most families also emphasize how important their neurodivergent children are to the family`s life together.
CONCLUSIONS: It is important that primary pediatricians not only initiate the diagnostic process, but also assess the different needs of the different family independent of the diagnosis and, if necessary, initiate adequate measures or guide parents to institutions in charge. Parents who do not actively express their individual needs should nevertheless be advised about support services, including financial counseling. The positive aspects mentioned by families can be emphasized and used as resources to improve their quality of life.
OBJECTIVE: To investigate how the system of care, support, and therapies for children on the autism spectrum is perceived by their parents.
METHODS: A total of 57 parents of Swiss children on the autism spectrum participated in an online survey, and 20 of them participated in additional semi-structured interviews.
RESULTS: We found that parents of children on the autism spectrum may face substantial challenges and that social support is essential. Two thirds of the participating parents reported a long and difficult diagnostic process as challenging, and 60% expressed their need for closer follow-up after diagnosis and more support. Only one third of the parents stated that they manage their everyday lives well, whereas 17.5% felt exhausted, and more than half of the parents responded that they felt challenged. One fifth indicated that they had poor family support, and half reported substantial financial challenges. At the same time, most families also emphasize how important their neurodivergent children are to the family`s life together.
CONCLUSIONS: It is important that primary pediatricians not only initiate the diagnostic process, but also assess the different needs of the different family independent of the diagnosis and, if necessary, initiate adequate measures or guide parents to institutions in charge. Parents who do not actively express their individual needs should nevertheless be advised about support services, including financial counseling. The positive aspects mentioned by families can be emphasized and used as resources to improve their quality of life.
摘要：
背景：自闭症谱系儿童的父母在照顾孩子方面经常面临巨大挑战。因此，针对家庭个人需求的早期支持对于自闭症谱系儿童及其家庭的发展和生活质量至关重要。然而,迄今为止，尚不清楚可用的支持是否满足父母的需求。
目的：研究护理系统如何，支持,自闭症谱系儿童的治疗方法被他们的父母所感知。
方法：共有57名瑞士自闭症儿童的父母参加了一项在线调查，其中20人参加了额外的半结构化面试。
结果：我们发现自闭症谱系儿童的父母可能面临重大挑战，社会支持至关重要。三分之二的参与父母报告说，漫长而艰难的诊断过程具有挑战性，60%的人表示他们需要在诊断后更密切的随访和更多的支持.只有三分之一的父母说他们很好地管理自己的日常生活，而17.5%的人感到筋疲力尽，超过一半的父母回答说他们感到挑战。五分之一的人表示他们的家庭支持很差，一半的人报告了巨大的财务挑战。同时,大多数家庭还强调他们的神经分歧的孩子对家庭生活的重要性。
结论：重要的是，初级儿科医生不仅要启动诊断过程，而且还要独立于诊断评估不同家庭的不同需求，如有必要,采取适当措施或引导父母到负责的机构。然而，不积极表达个人需求的父母应该得到有关支持服务的建议，包括财务咨询。可以强调家庭提到的积极方面，并将其用作改善其生活质量的资源。
目的：研究护理系统如何，支持,自闭症谱系儿童的治疗方法被他们的父母所感知。
方法：共有57名瑞士自闭症儿童的父母参加了一项在线调查，其中20人参加了额外的半结构化面试。
结果：我们发现自闭症谱系儿童的父母可能面临重大挑战，社会支持至关重要。三分之二的参与父母报告说，漫长而艰难的诊断过程具有挑战性，60%的人表示他们需要在诊断后更密切的随访和更多的支持.只有三分之一的父母说他们很好地管理自己的日常生活，而17.5%的人感到筋疲力尽，超过一半的父母回答说他们感到挑战。五分之一的人表示他们的家庭支持很差，一半的人报告了巨大的财务挑战。同时,大多数家庭还强调他们的神经分歧的孩子对家庭生活的重要性。
结论：重要的是，初级儿科医生不仅要启动诊断过程，而且还要独立于诊断评估不同家庭的不同需求，如有必要,采取适当措施或引导父母到负责的机构。然而，不积极表达个人需求的父母应该得到有关支持服务的建议，包括财务咨询。可以强调家庭提到的积极方面，并将其用作改善其生活质量的资源。
