"Your Life Turns Upside Down": A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome

• Asıl Yazarlar: Cristina García-Bravo (Yazar), Domingo Palacios-Ceña (Yazar), Elisabet Huertas-Hoyas (Yazar), Jorge Pérez-Corrales (Yazar), Sergio Serrada-Tejeda (Yazar), Marta Pérez- (Yazar), Javier Gueita-Rodríguez (Yazar), Rosa Mª Martínez-Piédrola (Yazar)
• Materyal Türü: Kitap
• Baskı/Yayın Bilgisi: MDPI AG, 2022-12-01T00:00:00Z.
• Konular: article
• Online Erişim: Connect to this object online.

(1) Background: Parents of children with rare diseases experience great uncertainty and employ different strategies to care for their children and cope with the disease. The purpose of the present study was to describe the perspective of parents with children with Phelan McDermid Syndrome (PMS). (2)...