Taanila A, Järvelin M R, Kokkonen J
Department of Public Health Science, University of Oulu, Finland.
J Clin Nurs. 1998 Nov;7(6):505-11. doi: 10.1046/j.1365-2702.1998.00190.x.
This paper describes changes that have taken place, over a period of 10 years, in the way physicians and nursing staff in Finland give initial information and advice to the parents about their child's disability. It also discusses the association between quality of information given and parents' feelings of insecurity or helplessness. In the study, we compared the experiences of parents of older (aged 12-17) disabled children with those of parents with younger (aged 7-9 years) disabled children. There were 85 children, whose disabilities were either learning or physical, or, in a few cases, both. Parents completed a questionnaire and were interviewed by a social worker. According to these reports, the initial information and advice received by the parents with younger children about their child's disability and its treatment, and on coping with the child at home, was better than that received by the parents of the older children. The parents of the younger children also reported feeling better prepared to take care of their child. Those parents who reported having received little information and practical advice on coping with their child at home experienced feelings of insecurity and helplessness five times as often as those who were satisfied with the information and advice.
本文描述了芬兰的医生和护理人员在10年时间里，向孩子父母提供有关其子女残疾的初步信息和建议的方式所发生的变化。本文还讨论了所提供信息的质量与父母的不安全感或无助感之间的关联。在这项研究中，我们比较了年龄较大（12至17岁）残疾儿童的父母与年龄较小（7至9岁）残疾儿童的父母的经历。共有85名儿童，他们的残疾要么是学习方面的，要么是身体方面的，少数情况下两者皆有。父母们填写了一份问卷，并接受了一名社会工作者的访谈。根据这些报告，年龄较小孩子的父母在孩子残疾及其治疗方面，以及在家中照顾孩子方面，所收到的初步信息和建议比年龄较大孩子的父母收到的更好。年龄较小孩子的父母还表示，他们感觉在照顾孩子方面准备得更充分。那些报告在家中应对孩子时几乎没有收到信息和实用建议的父母，感到不安全和无助的频率是那些对所获信息和建议感到满意的父母的五倍。
