Obeidat Hala Mahmoud, Al Hadid Lourance A, Al-Sagarat Ahmad Yahya, Khrisat Majed
Maternal and Child Health Nursing, Mutah University, Jordan.
Department of Nursing, Aisha Bint Al Hussein College of Nursing and Health Sciences, Al Hussein Bin Talal University, Jordan.
J Pediatr Nurs. 2021 Mar-Apr;57:5-10. doi: 10.1016/j.pedn.2020.11.001. Epub 2020 Nov 15.
Duchenne muscular dystrophy (DMD) is a congenitally inherited disease characterized by progressive muscle damage and loss of function in children, which currently has no cure. Parents of children with DMD go through significant challenges when caring for a child with this condition.
The aim of this study was to explore the lived experience of Jordanian parents caring for a child with DMD.
We utilized qualitative, descriptive, phenomenological design. Ten pairs of parents of children with DMD were interviewed at their homes from the southern region of Jordan. The Participant verbal as well as nonverbal cues were recorded during the interview. Data were analyzed using Colaizzi's 7-step method.
Parents experienced psychosocial, emotional, and financial problems, which affected family dynamics and the quality of life. Themes emerged were face the new disease, caring for our child and handling the situation, staying in contact with the outside world, and career options and opportunities.
Parents experienced feelings of stress and anxiety mixed with emotions of hopelessness. Parents relieved anxiety by sharing feelings with others, assuring themselves and accepting the reality of child's illness.
It is necessary that parents undergo psychological counseling individually or by joining groups who had similar experiences. Follow-up by experts through the coping process. Addressing equity services in the country is necessary.
杜氏肌营养不良症（DMD）是一种先天性遗传疾病，其特征是儿童进行性肌肉损伤和功能丧失，目前尚无治愈方法。DMD患儿的父母在照顾患有这种疾病的孩子时面临着巨大挑战。
本研究的目的是探讨约旦父母照顾DMD患儿的生活经历。
我们采用了定性、描述性、现象学设计。对约旦南部地区的10对DMD患儿父母进行了家访。访谈期间记录了参与者的言语和非言语线索。使用科莱齐的七步法对数据进行分析。
父母经历了心理社会、情感和经济问题，这些问题影响了家庭动态和生活质量。出现的主题有面对新疾病、照顾我们的孩子和应对情况、与外界保持联系以及职业选择和机会。
父母经历了压力和焦虑的情绪，同时夹杂着绝望的情绪。父母通过与他人分享感受、自我安慰和接受孩子患病的现实来缓解焦虑。
父母有必要单独接受心理咨询或加入有类似经历的群体。专家在应对过程中进行随访。在该国提供公平的服务是必要的。
