Exploring the Dynamics of Caring for a Child With a Terminal Illness of Duchenne Muscular Dystrophy (DMD) and Its Copious Components on the Caregivers

Duchenne muscular dystrophy (DMD) is an inherited disorder that results in increasing muscle degeneration and muscle weakness because of a mutation in the dystrophin protein. Despite there being no cure for this condition, early diagnosis can slow down the progression of muscle weakness. Studies have shown that families and caregivers of patients with DMD have limited access to support systems, further intensifying their responsibilities. Since the mental well-being of families and caregivers of patients with DMD is crucial for healthy and progressive family dynamics, ascertaining the psychological and social impacts it has on the caregivers will help improve the quality of life of patients with this terminal illness. This study aims to recognize the direct and indirect effects on the caregiver caring for the individual diagnosed with DMD, with a primary focus on the health-related quality of life (HRQoL), psychological well-being, and financial burden. Using the PubMed database and a particular arrangement of Medical Subject Headings (MeSH) terms, 93 articles were retrieved and evaluated, of which eight only met the inclusion criteria. The eight chosen articles were organized into a table and dissected further for their importance and relevance to this review article. This literature review highlights the most significant information from each article and is individually analyzed to deduce the main burdens on caregivers of patients with the terminal illness of DMD. Conclusively, this review highlights that caregivers of individuals with DMD bear a substantial burden that negatively affects their HRQoL, contributes to a decline in psychological well-being, and places an increased financial burden on the family.