“…They were just treating her Symptom by Symptom”: maternal experiences of having a child with spinal muscular atrophy in Ghana

The study identified challenges faced by mothers in caring for their children with SMA. These challenges are reported to significantly impact their physical, psychological, social, and spiritual well-being. To support these mothers effectively, it is recommended that the Ministry of Health, Ghana Health Service, healthcare professionals, policymakers, and non-governmental organisations in Ghana should consider community engagement and education, integration of spiritual care, and psychosocial support programmes.