Yamaguchi Miku, Suzuki Machiko
Department of Human Health Science, Graduate School of Medicine, Kyoto University, Kyoto, Japan.
Department of Human Health Science, Graduate School of Medicine, Kyoto University, Kyoto, Japan.
Neuromuscul Disord. 2015 Jan;25(1):85-93. doi: 10.1016/j.nmd.2014.09.001. Epub 2014 Sep 10.
The population of adults with Duchenne muscular dystrophy is increasing rapidly. However, information for individuals with DMD and their parents about the transition to adulthood is lacking; young adult sons and their parents may struggle to maintain smooth family functioning and well-being during this period. This study examined the process of change in parental behaviors during their son's transition. The participants were 18 parents with sons aged 15-30 years. Data were obtained from semi-structured interviews and analyzed using a grounded theory approach. Eleven categories of behaviors were identified across three domains: emotional, physical, and determination. The changes made by parents were directed toward becoming a back-up carer: letting go of some control but still being active participants in their sons' lives. We identified several issues important for well-being in the transition period: psychological support, the aging of the parents (the primary caregivers) and the concomitant emergency and specialized care needs, and parents' intervention in the self-determination of adult sons with DMD. The findings of this study may provide a rationale to advocate for policies to improve support for parents of sons with DMD transitioning to adulthood and provide information to help parents in their role as primary care providers.
患有杜氏肌营养不良症的成年人口正在迅速增加。然而，关于杜氏肌营养不良症患者及其父母向成年期过渡的信息却很缺乏；在此期间，成年儿子及其父母可能难以维持家庭的平稳运转和幸福生活。本研究考察了儿子过渡期间父母行为的变化过程。参与者为18位儿子年龄在15至30岁之间的父母。数据通过半结构化访谈获得，并采用扎根理论方法进行分析。在情感、身体和决心三个领域共识别出11类行为。父母做出的改变旨在成为后备照顾者：放开一些控制权，但仍然积极参与儿子的生活。我们确定了在过渡时期对幸福至关重要的几个问题：心理支持、父母（主要照顾者）的衰老以及随之而来的紧急和特殊护理需求，以及父母对患有杜氏肌营养不良症的成年儿子自我决定权的干预。本研究结果可为倡导改善对杜氏肌营养不良症患者父母向成年期过渡的支持政策提供理论依据，并为帮助父母履行主要照顾者的角色提供信息。
