Knowledge of epilepsy during transition for young people with epilepsy
Research type
Research Study
Full title
Developing a collaborative transition pathway for young people with epilepsy and their families, to explore knowledge transition and inform development of an informational intervention: The Trophy Study.
IRAS ID
172612
Contact name
Janine Beverley Winterbottom
Contact email
Sponsor organisation
The Walton Centre NHS Foundation Trust
Duration of Study in the UK
1 years, 8 months, 2 days
Research summary
This study aims to develop a collaborative transition pathway for young people with epilepsy and their families, to explore knowledge transition and inform development of an informational intervention.
The study will use a mix-method design. Qualitative methods of focus group and interview will explore experience of transition for young people with epilepsy informing development of an informational intervention and development of care pathway. Quantitative methods of pre-and post-intervention questionnaire will compare knowledge of epilepsy before and after informational intervention development and evaluate care pathway development and satisfactions of care delivery.
Eligibility will be open to young people with confirmed diagnosis of epilepsy, aged 16 to 21 years and their parents/carers referred to and/or receiving care from Walton Centre NHS Trust clinicians at the Walton Centre or in its Satellite clinics. Young people with epilepsy able to converse in English, and able to provide written consent will be included. Individuals with learning disability will be excluded as a study focusing on this group of individuals during transition is already taking place in the centre.
Recruitment will map the diversity of experience of transition by young people with epilepsy within the target age group; and utilize existing information sources (clinic lists, referral letters).
Analysis will involve use of NVIVO computerised qualitative analysis tool and SPSS statistical software.
The main study outcomes will be development of an epilepsy transition care pathway and informational intervention for young people with epilepsy during transition. These outcomes will inform the diversity of experience of learning about epilepsy by young people with epilepsy and their parents/carers during transition into adult epilepsy services.
Secondary outcomes will identify potential barriers and moderating factors to help target interventions to incorporate aspects of resiliency as well as knowledge of own condition to improve the experience of the transition process and improve psychological outcome.REC name
North West - Preston Research Ethics Committee
REC reference
15/NW/0600
Date of REC Opinion
20 Aug 2015
REC opinion
Further Information Favourable Opinion