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

Journal of Pediatric Nursing
Hala Mahmoud ObeidatMajed Khrisat

Abstract

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 ...Continue Reading

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