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The impact of tuberous sclerosis complex – a parent’s perspective

Helen Willacy (Tuberous Sclerosis Complex New Zealand, Katikati, New Zealand)

Advances in Autism

ISSN: 2056-3868

Article publication date: 4 April 2016

126

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

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