Erby Lori Hamby, Rushton Cynda, Geller Gail
Department of Health, Behavior and Society, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
Semin Pediatr Neurol. 2006 Jun;13(2):132-40. doi: 10.1016/j.spen.2006.06.009.
Duchenne muscular dystrophy is an inherited progressive neuromuscular disease that generally results in death by early adulthood. Because of its life-threatening nature, discussions of advance care planning are extremely relevant to families with affected children and adolescents. Seventeen parents of sons with Duchenne muscular dystrophy were interviewed about their attitudes, experiences, and the nature of their discussions about these topics. Parents showed a lack of familiarity with and experience communicating about advance care planning. They also discussed opportunities for communication that centered on transitional life events. Parents appeared to vacillate between hope for future treatments, avoidance of emotionally difficult aspects of the disease, and presence with the fullness of life's experiences. These data suggest a model for future research in which windows of opportunity for discussion may exist as sons are approaching significant transitional milestones and parents are able to see the world through a lens of "presence."
杜氏肌营养不良症是一种遗传性进行性神经肌肉疾病，通常会导致患者在成年早期死亡。由于其危及生命的特性，对于患有此病的儿童和青少年家庭而言，提前护理规划的讨论极为重要。我们采访了17位患有杜氏肌营养不良症男孩的家长，了解他们对此类话题的态度、经历以及讨论的性质。家长们对提前护理规划缺乏了解，也没有相关沟通经验。他们还讨论了围绕过渡性生活事件的沟通机会。家长们似乎在对未来治疗的希望、回避疾病带来的情感难题以及充分体验生活之间摇摆不定。这些数据为未来的研究提供了一个模型，即在儿子们接近重要的过渡里程碑且家长能够以“在场”的视角看待世界时，可能存在讨论的机会窗口。
