This study's aim was to understand the experience of being the father of a boy diagnosed with Duchenne Muscular Dystrophy (DMD). Eight fathers of 10-year-old or older boys diagnosed with DMD, living in RibeirãoPreto and surrounding cities participated in the study. Interviews included a semi-structured script and data were analyzed according to thematic content analysis. The results show that the confirmation of a DMD diagnosis shocked fathers and was mixed with sorrow, helplessness and hopelessness. Most fathers considered the illness of their child to be a mission sent by God, which helps to alleviate the pain and anguish caused by the disease. As the symptoms started manifesting, the fathers experienced losses that exposed them to great suffering and triggered an anticipatory mourning process. The fathers assigned to the disease the meaning of a mission to be accomplished and considered themselves to be "special fathers", which positively influenced their adaptation to the disease. Identifying and understanding how fathers experience fatherhood in the presence of a chronic disease/disability is essential to devising psychological counseling and care programs directed to fathers and their families.

译文

这项研究的目的是了解成为被诊断患有Duchenne肌营养不良症 (DMD) 的男孩的父亲的经历。居住在ribeir ã opreto和周边城市的八名被诊断为DMD的10岁或10岁以上男孩的父亲参加了这项研究。访谈包括半结构化脚本,并根据主题内容分析对数据进行分析。结果表明,DMD诊断的确认震惊了父亲,并充满了悲伤,无助和绝望。大多数父亲认为孩子的疾病是上帝派来的使命,这有助于减轻疾病造成的痛苦和痛苦。随着症状开始显现,父亲遭受了损失,使他们遭受了巨大的痛苦,并引发了预期的哀悼过程。父亲为疾病分配了要完成的任务的含义,并认为自己是 “特殊父亲”,这对他们对疾病的适应产生了积极影响。识别和理解父亲在存在慢性病/残疾的情况下如何经历父亲身份对于制定针对父亲及其家人的心理咨询和护理计划至关重要。

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