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Development of the parental needs scale for rare diseases: a tool for measuring the supportive care needs of parents caring for a child with a rare disease

BACKGROUND: Children and families affected by rare diseases have received scant consideration from the medical, scientific, and political communities, with parents’ needs especially having received little attention. Affected parents often have limited access to information and support and appropriat...

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Pubblicato in:J Multidiscip Healthc
Autori principali: Pelentsov, Lemuel J, Fielder, Andrea L, Laws, Thomas A, Esterman, Adrian J
Natura: Artigo
Lingua:Inglês
Pubblicazione: Dove Medical Press 2016
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Accesso online:https://ncbi.nlm.nih.gov/pmc/articles/PMC5024776/
https://ncbi.nlm.nih.gov/pubmed/27672327
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.2147/JMDH.S113898
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