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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Detalles Bibliográficos
Autores principales: Pelentsov, Lemuel J, Fielder, Andrea L, Laws, Thomas A, Esterman, Adrian J
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove Medical Press 2016
Materias:
Original Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024776/
https://www.ncbi.nlm.nih.gov/pubmed/27672327
http://dx.doi.org/10.2147/JMDH.S113898

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024776/
https://www.ncbi.nlm.nih.gov/pubmed/27672327
http://dx.doi.org/10.2147/JMDH.S113898

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