The experiences of families following hemispheric surgery
Research type
Research Study
Full title
Motor function in children and young people following hemispheric surgery: The experiences of patients and their families from a single Paediatric Hospital in the UK.
IRAS ID
148375
Contact name
Iain Beith
Contact email
Sponsor organisation
Moorfields Eye Hospital NHS Foundation Trust
Clinicaltrials.gov Identifier
14/LO/0836, REC reference number: London-City&East
Research summary
Epilepsy is a condition resulting in disordered electrical activity in the brain. These bursts of abnormal signals, termed seizures, can result in a number of symptoms of varying type and severity. When seizures are found to be arising from one side of the brain (hemisphere), a treatment that may be indicated is hemispheric surgery. This procedure involves disconnecting the dysfunctional hemisphere, isolating it and preventing it communicating with the other functioning side of the brain, or the rest of the body.
Whilst the surgery offers a majority of patients’ excellent seizure management, in some patients this surgical disconnection results in the secondary impact of a new (or worsening of a pre-existing) weakness of the opposite side to their body. Initially this can be as severe as an inability to hold their head up, sit independently or stand. This results in a loss of independence, mobility and a need for rehabilitation, impacting the patient and the whole family.
This study aims to explore the experiences of children and young people (CYP) who are one year following surgery, as well as their parents, and investigate the changes that occurred in their movement over time and how it made them feel. The Researcher will carry out interviews with parents and will design tailored interview style sessions for CYP in order to gather this information. The sessions with the CYP may use creative approaches to enable their voice to be heard and engage with the research. These sessions will be recorded then transcribed, and the stories of the parent and child brought together to form one narrative. These family narratives will be analysed for themes of facilitators, barriers and types of experience. The research hopes to describe commonalities and differences within and between families in order to enhance practice and the patient care pathway.
REC name
London - City & East Research Ethics Committee
REC reference
14/LO/0836
Date of REC Opinion
19 Jun 2014
REC opinion
Favourable Opinion