Living with an Individual with Duchenne Muscular Dystrophy: A Phenomenological Study

Abstract

Using Colaizzi’s Method of data analysis, which is a phenomenological approach, this paper explored the role that a primary caregiver plays in the daily life of an individual with Duchenne Muscular Dystrophy (DMD). DMD is a fatal inherited disease that typically appears in male children before the age of six with the child usually losing the ability to walk by age twelve (CDC, 2009). There is no known cure for this disease and treatment goals focus on minimizing symptoms and maximizing the individual’s quality of life. The data for the research was obtained from peer reviewed research which focused on DMD and two private interviews with the primary caregiver of the individual with DMD. The themes that arose from the data included the primary caregiver’s desire to seek out proactive healthcare providers, advocate for better treatment, eliminate or reduce environmental obstacles, and maintain normalcy in her child’s life. Conclusions that were formed from the research were the importance of healthcare professionals and school officials understanding the unique needs of the family. Additionally, including the individual with DMD is important so that he doesn’t experience alienation and exclusion from his peers. These are essential goals for community professionals and healthcare workers so that patients with DMD and their families can experience the highest quality of life.