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‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases
BACKGROUND: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased...
| Autores principales: | , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
John Wiley and Sons Inc.
2019
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6882256/ https://www.ncbi.nlm.nih.gov/pubmed/31466132 http://dx.doi.org/10.1111/hex.12958 |