Parents’ Experiences: Landau Kleffner Syndrome: Version 1
Research type
Research Study
Full title
PARENTS’ EXPERIENCES OF HAVING A CHILD DIAGNOSED WITH LANDAU KLEFFNER SYNDROME
IRAS ID
210547
Contact name
Cleo Williamson
Contact email
Sponsor organisation
University Of East London
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
Parents’ Experience of Having A Child Diagnosed With Landau Kleffner Syndrome
Landau Kleffner Syndrome (LKS) is a rare childhood neurological disorder that is characterised by epileptic activity, which leads to a gradual or sudden loss of language expression and comprehension skills (Launder & Kleffner, 1998). The majority of research into LKS presents a medical exploration, with a focus on etiology and development.
The current study aims to take a qualitative approach, using interviews to explore parents’ experience of having a child diagnosed with Landau Kleffner Syndrome. As with other developmental disorders, the experience of LKS is complex and unique. Consequently, direct exploration with families with LKS will allow for a greater understanding of LSK and help provide more insight into how services could develop and be best delivered to families.
Families known to clinicians at a Great Ormond Street Hospital will be approached to take part in the research. Interviews will be requested with families whose children are no longer in the ‘active phase’ of LKS. This includes that their child; is no longer taking steroid medication for LKS, no longer shows Electrical Status Epilepticus in sleep, and their language abilities have stabilised). These inclusion criteria are to allow for a wide scope of experiences to be discussed within the interview.
This research is being conducted in conjunction with the University of East London and Great Ormond Street Hospital, and will fulfil part of the requirements for the researcher's professional doctorate in Clinical Psychology.
REC name
London - Westminster Research Ethics Committee
REC reference
16/LO/1484
Date of REC Opinion
30 Sep 2016
REC opinion
Further Information Favourable Opinion