Research Project: Familjers och personals erfarenheter, överväganden och ställningstaganden avseende nya medicinska möjligheter för barn med spinal muskelatrofi (SMA).
Project leader
Ulrika Kreicbergs, Palliativt Forskningscentrum Ersta Sköndal Bräcke Högskola
Project Members
Camilla Udo
Project Period
01-02-2019 -
Project Status
Present
Description
Keywords
Spinal muskelatrofi, livskvalitet, etiska överväganden, barn, familj
Research Profile
Health and Social Welfare
Subject
Caring Science
Financiers
Anna-Lisa och Bror Björnssons stiftelse
Publications
Kreicbergs, Ulrika, Landfeldt, Erik, Sejersen, Thomas, Cortina Borja, Mario, Udo, Camilla . "Not only has she survived, but she lives a happy life" : a nationwide study on parents' perspective on their child's treatment
Udo, Camilla, Sejersen, Thomas, Kreicbergs, Ulrika . Experiences of family members of children with spinal muscular atrophy during the Covid-19 pandemic
Landfeldt, Erik, Udo, Camilla, Lövgren, Malin, Sejersen, Thomas, Kreicbergs, Ulrika . Health-related quality of life of children with spinal muscular atrophy in Sweden : A prospective cohort study in the era of disease-modifying therapy European journal of paediatric neurology , 2023, Vol. 46, 67-73. Article : refereed.
Udo, Camilla, Kreicbergs, Ulrika . Lessons learned during the COVID-19 and beyond pandemic for children living with rare diseases : Experiences of families of children with spinal muscular atrophy during the COVID-19 pandemic
Udo, Camilla, Lövgren, Malin, Sejersen, Thomas, Tulinius, Mar, Kreicbergs, Ulrika . “We still suffer from the consequences”. Experiences of family members of children with spinal muscular atrophy during the COVID-19 pandemic : a nationwide study
