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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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Bibliografske podrobnosti
izdano v:J Multidiscip Healthc
Main Authors: Pelentsov, Lemuel J, Fielder, Andrea L, Laws, Thomas A, Esterman, Adrian J
Format: Artigo
Jezik:Inglês
Izdano: Dove Medical Press 2016
Teme:
Online dostop: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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