向儿童传达脊髓性肌萎缩症诊断和自主权原则。
Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.
机构信息
Faculty of Medicine, University of Porto, Alameda Prof. Hernâni Monteiro, 4200-319, Porto, Portugal.
Lauro Wanderley University Hospital, Federal University of Paraíba, Cidade Universitária Campus I, 58051-900, João Pessoa, Paraíba, Brasil.
出版信息
BMC Pediatr. 2022 Aug 17;22(1):489. doi: 10.1186/s12887-022-03552-3.
INTRODUCTION
The trinomial relationship between physicians/children/guardians is essential in the process of communicating a disease and its prognosis.
OBJECTIVE
Analyzing the exercise of autonomy by this trinomial relationship in communicating the diagnosis of spinal muscular atrophy (SMA). METHODOLOGY: Caregivers of SMA patients answered a questionnaire containing a structured interview and the Event Impact Scale - Revised.
RESULTS
The sample comprised 50 volunteers, 94% of whom were female caregivers. Psychological trauma was predominantly reported when caregivers communicated the diagnosis to children. 22% have a high risk of post-traumatic stress, relating the feeling of unpreparedness in communicating this to the child.
CONCLUSIONS
It was identified that the failure in communication is the main factor for negative repercussions on the autonomy of children and their guardians, with self-reported psychological trauma, besides the high risk for post-traumatic stress syndrome.
简介
在传达疾病及其预后的过程中，医生/儿童/监护人的三元关系至关重要。
目的
分析三元关系在传达脊髓性肌萎缩症（SMA）诊断中的自主性行使。
方法
SMA 患者的护理人员回答了一份包含结构化访谈和事件影响量表修订版的问卷。
结果
样本包括 50 名志愿者，其中 94%是女性护理人员。当护理人员向儿童传达诊断时，主要报告了心理创伤。22%的人有患创伤后应激障碍的高风险，将这种与孩子沟通的不准备感与之联系起来。
结论
研究发现，沟通失败是对儿童及其监护人自主权产生负面影响的主要因素，除了创伤后应激障碍综合征的高风险外，自我报告的心理创伤也是如此。
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