The supportive care needs of parents caring for a child with a rare disease

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Disability and Health Journal

This wide-ranging review of studies of parental needs dating between 1990-2014, finds numerous unmet needs for parents with children with rare conditions. These issues range through a lack of emotional support, poor communication on the part of medical professionals and the more specific needs to mitigate stress, pressure and anxiety. Using the Supportive Care Needs Framework (SCNF) as a reference, this comprehensive study finds a great deal of inefficiencies in the current support levels.

However although this report finds that in many cases the standards of the SCNF is not met, the report argues that the SCNF is itself not an ambitious enough standard of well-being for parents, and that in reality, parental needs require substantial further research and review.

Authors: Lemuel J. Pelentsov, Thomas A. Laws, Adrian J. Esterman, Article first published online: 7 APR 2015

Publisher: ScienceDirect, April 2015.

Article url:  

Article DOI:    10.1016/j.dhjo.2015.03.009