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

• Main Authors: Cristina García-Bravo (Author), Domingo Palacios-Ceña (Author), Elisabet Huertas-Hoyas (Author), Jorge Pérez-Corrales (Author), Sergio Serrada-Tejeda (Author), Marta Pérez- (Author), Javier Gueita-Rodríguez (Author), Rosa Mª Martínez-Piédrola (Author)
• Format: Book
• Published: MDPI AG, 2022-12-01T00:00:00Z.
• Subjects: article
• Online Access: 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)...