Background: Duchenne muscular dystrophy (DMD) is a rare X-linked recessive genetic disorder characterised by progressive muscle weakness and atrophy. While extensive research has focused on disease pathophysiology and treatment, the experiences of caregivers who provide long-term care for DMD patients remain underexplored. Caregivers face multifaceted challenges, including physical care demands, emotional distress, financial strain, and social isolation, yet their subjective experiences and unmet needs are poorly understood.
Objectives: This qualitative study aims to explore the lived experiences of DMD caregivers, identify key themes related to caregiving burden and coping strategies, and understand the impact of caregiving on the physical and psychological well-being of caregivers. Additionally, the study seeks to identify factors that contribute to caregiver resilience and positive adaptation.
Results: Thematic analysis revealed four major themes: (1) Multidimensional caregiving burden encompassing physical exhaustion, emotional distress, and financial strain; (2) Social isolation and relationship strain due to caregiving responsibilities; (3) Psychological adaptation processes including acceptance, finding meaning, and post-traumatic growth; and (4) Unmet needs for professional support and respite care. Caregivers reported high levels of anxiety and depression, with many experiencing sleep disturbances and physical health deterioration. Despite these challenges, caregivers demonstrated remarkable resilience through positive reframing and seeking social support.
Conclusion: In conclusion, the considerable physical, emotional, and financial burdens experienced by DMD caregivers underscore an urgent need for comprehensive support systems. Healthcare providers should implement routine screening for caregiver distress and offer targeted interventions, including psychological support, respite care services, and financial assistance. Future research is recommended to focus on developing and evaluating caregiver-centric interventions that aim to enhance their quality of life and caregiving capacity.