Families and healthcare professionals caring for a sick or disabled child without a definitive diagnosis face unique challenges, particularly in relation to managing uncertainty, access to healthcare and coordination of care. There has been little research exploring the impact this has on families, their support needs or their experience of health services.

中文翻译：

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“我们不知道明天会发生什么”：父母照顾患有未确诊遗传病的孩子的经历

在没有明确诊断的情况下照顾生病或残疾儿童的家庭和医疗保健专业人员面临着独特的挑战，特别是在管理不确定性、获得医疗保健和协调护理方面。很少有研究探讨这对家庭、他们的支持需求或他们的医疗服务经验的影响。