TY  - JOUR
AB  - 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.
VL  - 2
IS  - 2
SN  - 2056-3868
DO  - 10.1108/AIA-12-2015-0026
UR  - https://doi.org/10.1108/AIA-12-2015-0026
AU  - Willacy Helen
ED  - Lisa Underwood and Charlotte Tye
PY  - 2016
Y1  - 2016/01/01
TI  - The impact of tuberous sclerosis complex – a parent’s perspective
T2  - Advances in Autism
PB  - Emerald Group Publishing Limited
SP  - 70
EP  - 75
Y2  - 2024/04/16
ER  -