Parent experiences of GT for their child with epilepsy/DEE
Research type
Research Study
Full title
“Exploring the role of genetic testing in parents’ psychological adjustment to their child’s epilepsy or Developmental and Epileptic Encephalopathy (DEE) diagnosis using grounded theory”.
IRAS ID
340600
Contact name
Liam Dorris
Contact email
Sponsor organisation
University of Glasgow
Duration of Study in the UK
0 years, 10 months, 23 days
Research summary
Background: The clinical utility of genetic testing for children with developmental and epileptic encephalopathy (DEE) has been clearly documented. Recent studies examining the personal utility of genetic testing for parents of these children have identified cognitive, behavioural, and affective factors impacted by the genetic testing process. However, these factors do not explain how genetic testing may be helpful in supporting psychological adjustment to their child’s diagnosis (Hayeems, Luca, Assamad, Bhatt, & Ungar; 2021).
Aims: To determine the role of early/timely genetic testing in children with DEE and treatment resistant epilepsy on parental adjustment to their child’s diagnosis and to determine the underlying processes by which this happens.
Methods: Focus group data from 25-30 parents of children with developmental and epileptic encephalopathy will be coded and categorised. Consistent with Charmaz’s approach to grounded theory, these categories will be used to develop an explanatory theoretical model grounded in the data, which outlines the role of genetic testing in parental adjustment to their child’s diagnosis of DEE/treatment-resistant epilepsy.
Practical Applications: The study could support the development of psychologically informed resources for parents to support adjustment to their child’s diagnosis and help to define the personal utility of genetic testing more clearly for parents of children with DEEs and treatment-resistant epilepsy.
REC name
West of Scotland REC 5
REC reference
24/WS/0055
Date of REC Opinion
21 May 2024
REC opinion
Favourable Opinion