Spinal muscular atrophy type I is a genetic disease characterized by degeneration of spinal cord motor neurons resulting in weakness, technology dependence and early demise. While the newly approved treatment nusinersen may alter the morbidity/mortality of this disease there continues to be complex treatment challenges to consider. The aim of this qualitative study was to understand from the parent's perspective, experiences of the family and child in the emergency center, hospital, and clinical care settings to identify gaps in care. Nineteen families interviewed had 22 children with spinal muscular atrophy I (11 deceased, 11 living). Three overarching themes emerged from parent interviews describing a range of experiences surrounding diagnosis, informed medical decision making and acute care practice. Identified quality improvements include development of a diagnostic screening tool, a medical decision tool, and emergency center informational template individualized to the child and providing an overview of spinal muscular atrophy I.
1. Nursing home residents who were visited at least once every 60 days by VA nurses (who were master's prepared and had experience in gerontological nursing) had fewer emergency room visits and hospital readmissions than those who were not visited. 2. The establishment of a good rapport between the liaison nurses and the nursing home staff was essential in initiating nursing interventions. 3. The recommendations most often made by the liaison nurses to the nursing home staff were for collaborative actions with other disciplines.
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