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The supportive care needs of parents with a child with a rare disease: results of an online survey

BACKGROUND: Parents caring for a child affected by a rare disease have unmet needs, the origins of which are complex and varied. Our aim was to determine the supportive care needs of parents caring for a child with a rare disease. METHODS: An online survey was developed consisting of 45 questions (1...

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Détails bibliographiques
Publié dans:BMC Fam Pract
Auteurs principaux: Pelentsov, Lemuel J., Fielder, Andrea L., Laws, Thomas A., Esterman, Adrian J.
Format: Artigo
Langue:Inglês
Publié: BioMed Central 2016
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Accès en ligne:https://ncbi.nlm.nih.gov/pmc/articles/PMC4955113/
https://ncbi.nlm.nih.gov/pubmed/27439905
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s12875-016-0488-x
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