Samson André, Tomiak E, Dimillo J, Lavigne R, Miles S, Choquette M, Chakraborty P, Jacob P
Faculté d'éducation, Univérsité d'Ottawa, Ottawa, ON K1N 6N5, Canada.
Chronic Illn. 2009 Jun;5(2):103-14. doi: 10.1177/1742395309104343.
Duchenne muscular dystrophy (DMD) is genetically determined, progressive and incurable. Our study's primary objective was to describe the lived experience of hope among parents of a child with DMD.
Semi-structured interviews were conducted with 12 parents having a child with DMD. A qualitative/ phenomenological approach was utilized to analyse the essential aspects of this experience.
We show that the experience of parental hope emerges from the cognitive appraisal of DMD. The child's illness can be perceived in three ways: as a severe loss, a call to adapt or a way to rediscover the child. Each of these appraisals leads to different ways of hoping. Parents can hope for a cure, the child's well-being or to see their child becoming a whole person. Hope can help parents absorb the initial crisis, sustain their adaptation or prepare for the fatal outcome.
Previous research has demonstrated that cognitive appraisal plays a central role in psychosocial adaptation to illness. Our research indicates that perception can also shape the nature of hope and suggests that health professionals should pay particular attention to the nature of parental hope. The fabric of parental hope can give an indication of how parents are coping and adjusting.
杜氏肌营养不良症（DMD）由基因决定，呈进行性且无法治愈。本研究的主要目的是描述DMD患儿家长的希望体验。
对12位有DMD患儿的家长进行了半结构式访谈。采用定性/现象学方法分析这一体验的基本方面。
我们发现，家长的希望体验源自对DMD的认知评估。孩子的疾病可从三种角度被感知：作为严重损失、适应的召唤或重新认识孩子的方式。每种评估都会导致不同的希望方式。家长可能希望找到治愈方法、孩子幸福安康或看到孩子成为完整的人。希望能帮助家长承受最初的危机、维持适应状态或为致命结局做好准备。
先前的研究表明，认知评估在心理社会适应疾病方面起着核心作用。我们的研究表明，认知也能塑造希望的本质，并建议医疗专业人员应特别关注家长希望的本质。家长希望的架构能表明家长如何应对和调整。
