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Autor:
Irene L. B. Oude Lansink, P. C. Carolien van Stam, Eline C. W. M. Schafrat, Manouk Mocking, S. Dido Prins, Anita Beelen, Inge Cuppen, W. Ludo van der Pol, Jan Willem Gorter, Marjolijn Ketelaar
Publikováno v:
Child: Care, Health and Development. 48:1062-1070
Parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child w