Caregivers Need Information About Help With Future Care, Study Finds

Caregivers of children with spinal muscular atrophy (SMA) said they need information about institutions that may benefit their child in the future, a questionnaire-based study suggested. Although caregivers’ burden was not directly related to income or disease type, increased burden was disease-related, the scientists said. The study, “The Burden of Primary Caregivers of Spinal Muscular Atrophy Patients and Their Needs,” was published in the Turkish Archive of Pediatrics.

In SMA, progressive muscle weakness and poor muscle tone and control impair motor development and future mobility. Problems with breathing, feeding, swallowing, and scoliosis (a sideways curvature of the spine) are also common in both children and adults with SMA. As a result, patients may need braces or wheelchairs, as well as breathing and feeding support.