Lived Experience of Jordanian Parents Having a Child with Duchenne Muscular Dystrophy

Background: 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. Purpose: The aim of this study was to explore the lived experience of Jordanian parents caring for a child with DMD. Design and methods: 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. Results: 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. Conclusions: 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. Practice implications: 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. (c) 2020 Elsevier Inc. All rights reserved.