Fujino Haruo, Saito Toshio, Matsumura Tsuyoshi, Shibata Saki, Iwata Yuko, Fujimura Harutoshi, Shinno Susumu, Imura Osamu
Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan.
Division of Child Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan.
J Child Neurol. 2015 Sep;30(10):1287-94. doi: 10.1177/0883073814558334. Epub 2015 Jan 6.
Communicating about Duchenne muscular dystrophy and its prognosis can be difficult for affected children and their family. We focused on how physicians provide support to the mothers of children with Duchenne muscular dystrophy who have difficulty communicating about the condition with their child. The eligible participants were certified child neurologists of the Japanese Society of Child Neurology. Participants responded to questionnaires consisting of free descriptions of a vignette of a child with Duchenne muscular dystrophy and a mother. We analyzed 263 responses of the participants. We found 4 themes on advising mothers, involving encouraging communication, family autonomy, supporting family, and considering the child's concerns. These results provide a better understanding of the communication between physicians and family members who need help sharing information with a child with Duchenne muscular dystrophy. These findings will assist clinical practitioners in supporting families and the affected children throughout the course of their illness.
对于患有杜氏肌营养不良症的儿童及其家庭来说，谈论该病及其预后可能会很困难。我们关注的是医生如何为患有杜氏肌营养不良症的儿童的母亲提供支持，这些母亲在与孩子交流病情方面存在困难。符合条件的参与者是日本儿童神经学会认证的儿童神经科医生。参与者对问卷进行了回复，问卷包括对一个患有杜氏肌营养不良症的儿童及其母亲的小案例的自由描述。我们分析了参与者的263份回复。我们在给母亲的建议中发现了4个主题，包括鼓励沟通、家庭自主、支持家庭以及考虑孩子的担忧。这些结果有助于更好地理解医生与那些需要帮助与患有杜氏肌营养不良症的孩子分享信息的家庭成员之间的沟通。这些发现将帮助临床医生在患病过程中为家庭和患病儿童提供支持。
