Caregiver Burden and Health-Related Quality of Life Among Parents of Children With Duchenne Muscular Dystrophy

Ahmed K. Bamaga Bamaga, Department of Pediatrics, Faculty of Medicine, King Abdulaziz University, Jeddah, Saudi Arabia AND Department of Pediatrics, Alsalama Hospital, Jeddah, Saudi ArabiaFollow

Abstract

Background: Caring for a child with Duchenne muscular dystrophy (DMD) places significant physical and emotional demands on parents and may negatively affect caregiver quality of life (QoL). This study assessed caregiver burden and QoL among parents of children with DMD.

Methods: This study included 77 parents of children with genetically confirmed DMD recruited from two pediatric neurology and pediatric neuromuscular clinics (King Abdulaziz University Hospital and Alsalama Hospital, Jeddah, Saudi Arabia). Caregiver burden was assessed using the 22-item Zarit Burden Interview (ZBI), and caregiver QoL using the Short Form-36 (SF-36) physical and mental component summary scores (PCS, MCS). Group comparisons, correlations, and multivariable linear regression analyses were performed.

Results: Caregivers had a mean age of 36.3 ± 6.6 years and an average caregiving duration of 40.9 ± 29.9 months. Most caregivers were female (72.7%) and married (79.2%). Children had a mean age of 9.9 ± 2.7 years; 72.7% were ambulatory and 27.3% non-ambulatory. Caregiver burden did not differ by ambulatory status, ventilatory support, cardiac medication use, or caregiver gender (p > 0.05). Higher burden was significantly associated with poorer caregiver mental health (r =-0.235, p = 0.039), but not with caregiver physical health (p = 0.293). In multivariable regression, non-ambulatory status was associated with lower caregiver physical QoL (B =-7.19, p = 0.047) in a PCS model that was not statistically significant overall (R² = 0.09, p = 0.07). Higher caregiver burden (B =-0.27, p = 0.025) and older caregiver age (B =-0.56, p = 0.036) independently predicted poorer caregiver mental QoL in a statistically significant MCS model (R² = 0.18, p = 0.004).

Conclusion: Parents of children with DMD experience notable burden associated with poorer mental well-being. Integrating psychological support and family-centered services into multidisciplinary DMD care may help reduce caregiver burden and improve overall caregiver quality of life.

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Recommended Citation

Bamaga A. Caregiver Burden and Health-Related Quality of Life Among Parents of Children With Duchenne Muscular Dystrophy. J. Med. Rehab. Sci. 2026; 3(2). https://doi.org/10.64064/3122-3370.1025