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被诊断为杜兴氏肌营养不良症(DMD)的男孩的父亲的经历。居住在RibeirãoPreto和周边城市的八个被诊断患有DMD的10岁或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了分析。结果表明,对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病是上帝的使命,这有助于减轻疾病带来的痛苦和痛苦。当症状开始显现时,父亲遭受的损失使他们遭受了巨大的痛苦,并引发了预期的哀悼过程。父亲赋予疾病以使命的意义,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的影响。识别和理解父亲在患有慢性疾病/残疾时如何经历父亲身份对于设计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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