Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic.
Mareike FuerboeterJohannes BoettcherClaus BarkmannHolger ZapfRojin NazarianSilke Wiegand-GrefeKonrad ReinshagenMichael BoettcherPublished in: Orphanet journal of rare diseases (2021)
Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.