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
(2016)
Journal Article
Pelentsov, L., Fielder, A., Laws, T., & Esterman, A. (2016). 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. Journal of Multidisciplinary Healthcare, 2016(9), 425-433. https://doi.org/10.2147/JMDH.S113898
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 limite... Read More about 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.