杜顯型肌肉失養症病童之父母面臨的壓力模式

A Stress Model for Parents of Children with Duchenne Muscular Dystrophy

本文研究目的，是探討父母照顧杜顯型肌肉失養症（Duchenne muscular dystrophy, DMD）病童過程中面臨的問題，利用壓力概念設計問答題填答方式收集資料（樣本數21）。研究結果顯示，杜顯型肌肉失養症病童之父母未接觸支持性團體前的照顧壓力模式為：（1）病況認知：由健康狀況改變至致病因的認知（不解、懷疑、合理化解釋、接受基因突變或性染色體遺傳）；（2）照顧需求：包含無障礙空間的爭取、社會資源的支持（角色取代、協調、和長期照顧）、和醫療資訊的提供（病因治療、心理調適、復健需求、福利制度）；（3）負擔（身體、心理、睡眠干擾、無力感）。提供支持性團體時得關注此家庭已獲得的知識，尤其是提供醫療、復健、心理調適、及角色取代和殘障福利制度的信息交換。

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.