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“Your Life Turns Upside Down”: A Qualitative Study of the Experiences of Parents with Children Diagnosed with Phelan-McDermid Syndrome
(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)...
Autores principales: | García-Bravo, Cristina, Palacios-Ceña, Domingo, Huertas-Hoyas, Elisabet, Pérez-Corrales, Jorge, Serrada-Tejeda, Sergio, Pérez-de-Heredia-Torres, Marta, Gueita-Rodríguez, Javier, Martínez-Piédrola, Rosa Mª |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9856272/ https://www.ncbi.nlm.nih.gov/pubmed/36670624 http://dx.doi.org/10.3390/children10010073 |
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