Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support
Open Access
- 11 February 2013
- journal article
- research article
- Published by Springer Science and Business Media LLC in Orphanet Journal of Rare Diseases
- Vol. 8 (1), 22
- https://doi.org/10.1186/1750-1172-8-22
Abstract
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 health, psychosocial and financial impacts on Australian families caring for a child with a rare disease.Keywords
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