Chen Jih-Yuan, Jong Yuh-Jyh
School of Nursing, Department of Pediatrics, Kaohsiung Medical University, Chung-Ho Memorial Hospital, Kaohsiung, Taiwan, ROC.
Hu Li Za Zhi. 2006 Jun;53(3):44-51.
This study explored the problems encountered by parents in caring for children with Duchenne muscular dystrophy (DMD). Open questionnaires (N=21) designed to identify and gauge stress factors were used to collect study data. Results showed that key elements of the care stress model in parents of DMD children prior to joining a support group included: (1) recognition of the factors underlying the changes in their child's health condition (incomprehension, inference, rationalization, and acceptance of mutation and sexual heredity); (2) special assistance needs such as barrier-free facilities, government/social assistance (role substitution, coordination, and long-term care) and medical information (on treating disease causes, psychological adjustment, rehabilitation, and the welfare system); and (3) strains (physical, psychological, sleep disturbances, and feelings of powerlessness). Once families of DMD children began participating in DMD support groups, it is important to note the information exchanged, particularly with regard to medical, rehabilitation, psychological adjustment, role substitution, and welfare benefit information.
本研究探讨了杜氏肌营养不良症（DMD）患儿家长在照顾孩子过程中遇到的问题。研究使用了开放式问卷（N = 21）来识别和衡量压力因素，以收集研究数据。结果显示，杜氏肌营养不良症患儿家长在加入支持小组之前，护理压力模型的关键要素包括：（1）认识到孩子健康状况变化背后的因素（理解、推断、合理化以及对突变和性遗传的接受）；（2）特殊援助需求，如无障碍设施、政府/社会援助（角色替代、协调和长期护理）以及医疗信息（关于疾病病因治疗、心理调适、康复和福利系统）；（3）压力（身体、心理、睡眠障碍和无助感）。一旦杜氏肌营养不良症患儿家庭开始参与杜氏肌营养不良症支持小组，需要注意所交流的信息，特别是关于医疗、康复、心理调适、角色替代和福利利益的信息。
