The impact of tuberous sclerosis complex – a parent’s perspective
Abstract
Purpose
The purpose of this paper is to describe the impact of having a child with tuberous sclerosis complex (TSC).
Design/methodology/approach
The author explains the process her family has been through on their TSC journey.
Findings
Several themes emerge from the author’s story: a lack of awareness about relatively common conditions such as epilepsy; a dearth of accessible information provided to families; delays in identification/assessment and a lack of follow up on parents’ concerns; the wide range in the quality of advice provided from one professional/service to another; the extent to which parents have to advocate for their children and the importance of social support.
Originality/value
Few journal articles explore the impact of complex health conditions on families from their perspective and in their own words. This thought provoking viewpoint piece provides a powerful insight into the reality of having a child with TSC.
Keywords
Citation
Willacy, H. (2016), "The impact of tuberous sclerosis complex – a parent’s perspective", Advances in Autism, Vol. 2 No. 2, pp. 70-75. https://doi.org/10.1108/AIA-12-2015-0026
Publisher
:Emerald Group Publishing Limited
Copyright © 2016, Emerald Group Publishing Limited