Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support

BACKGROUND: Families of children living with a rare disease report significant health and social burden, however, few studies have systematically examined family needs by using validated tools to assess the scope and extent of this burden. Our aim was to develop a comprehensive survey to assess heal...

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Detalles Bibliográficos
Autores principales: Anderson, Matilda, Elliott, Elizabeth J, Zurynski, Yvonne A
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2013
Materias:
Research
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3599672/
https://www.ncbi.nlm.nih.gov/pubmed/23398775
http://dx.doi.org/10.1186/1750-1172-8-22

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3599672/
https://www.ncbi.nlm.nih.gov/pubmed/23398775
http://dx.doi.org/10.1186/1750-1172-8-22

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