Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland.
Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland.
BMC Pediatr. 2024 Jul 9;24(1):439. doi: 10.1186/s12887-024-04912-x.
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.
To investigate how the system of care, support, and therapies for children on the autism spectrum is perceived by their parents.
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.
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.
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.
自闭症谱系儿童的父母在照顾孩子方面常常面临巨大挑战。因此，针对家庭个体需求的早期支持对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，尚不清楚现有的支持是否满足家长的需求。
调查自闭症谱系儿童的照护、支持和治疗系统如何被其家长所感知。
共有 57 名瑞士自闭症谱系儿童的家长参与了在线调查，其中 20 名家长还参加了额外的半结构化访谈。
我们发现自闭症谱系儿童的家长可能面临巨大挑战，社会支持至关重要。三分之二的参与家长表示漫长而艰难的诊断过程具有挑战性，60%的家长表示希望在诊断后得到更密切的随访和更多支持。只有三分之一的家长表示他们能很好地应对日常生活，而 17.5%的家长感到疲惫不堪，超过一半的家长表示感到有挑战。五分之一的家长表示他们得到的家庭支持很少，一半的家长表示面临巨大的经济挑战。与此同时，大多数家庭也强调他们的神经多样性孩子对家庭生活的重要性。
初级儿科医生不仅要启动诊断过程，还要独立于诊断评估不同家庭的不同需求，如果有必要，应启动适当的措施或指导家长前往相关机构。对于那些没有主动表达个人需求的家长，也应建议他们了解支持服务，包括财务咨询。应强调家庭提到的积极方面，并将其作为改善生活质量的资源加以利用。
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