Patient & Caregiver Concerns
Caregivers of patients with spinal muscular atrophy (SMA) report neglected aspects of their lives. Caregivers will need different kinds of support depending on factors such as the specific type of SMA their child has, whether they have other children, whether they intend to have future pregnancies, their socioeconomic status, and how extensive their social support network is. Awareness of the family’s support needs is a prerequisite to addressing them.
Effects on Home, School, and Leisure
Patients with SMA face psychological and social challenges that often hinder the quality of life.
Psychological support for patients and families is a critical but often neglected component of care in SMA.
A Qualitative Research Perspective
Through interviews and qualitative analysis, healthcare professionals can get a sense of the issues that are most important to those affected by SMA.