Keywords: spinal muscular atrophy; ventilator support; decision-making; caregiver EN spinal muscular atrophy ventilator support decision-making caregiver 122 128 7 04/21/22 20220301 NES 220301 Conflict of Interest A.P. received research funding and/or compensation for presentations and consultancy from Novartis Gene Therapies and Biogen. However, given the continuing need for palliative care for many children with SMA type 1 despite the available drug treatments, new medical care structures for children with SMA type 1 have to be established to adapt patients' care to the new needs. Participants were recruited via the patient database of the Department of Neuropediatrics and Muscle Disorders - Medical Center of the University of Freiburg, Germany, and the German SMA patient organization "Initiative SMA" (DGM e. V.). [Extracted from the article]