Pelchat D, Lefebvre H, Bouchard J M
Faculté des sciences infirmières, Université de Montréal;
Paediatr Child Health. 2001 Jul;6(6):365-74.
The disclosure of a diagnosis of cerebral palsy and its related disabilities is a difficult situation for parents, caregivers and physicians. A literature review shows that for the past 20 years, the number of dissatisfied parents has not changed. The goal of this qualitative and exploratory study - made at the request of the rehabilitation community - is to describe the process by which a diagnosis of cerebral palsy is disclosed, from the perspective of the people involved, and to determine what factors foster or inhibit a trusting relationship. Results show that parents, caregivers and physicians have two different perspectives at the time of disclosure, and it is difficult for them to agree. Parents are overwhelmed by the tragedy, while physicians are focused on the information they are providing. The disclosure creates great uncertainty that can block communication among parents, caregivers and physicians, but it could also be used to stimulate new coping strategies.
对父母、护理人员和医生来说,披露脑瘫诊断及其相关残疾情况是一件难事。一项文献综述表明,在过去20年里,不满意的父母数量没有变化。这项应康复界要求开展的定性探索性研究的目的,是从相关人员的角度描述披露脑瘫诊断的过程,并确定哪些因素促进或抑制信任关系。结果显示,父母、护理人员和医生在披露诊断时有两种不同观点,且他们难以达成一致。父母被这一悲剧压得喘不过气,而医生则专注于他们提供的信息。这种披露造成了极大的不确定性,可能阻碍父母、护理人员和医生之间的沟通,但也可用于激发新的应对策略。