The research will gain insight and understanding of the factors that both enhance and limit epilepsy medicine adherence in children and young people (aged 0-16 years). The work will consider how the barrier(s) to epilepsy medicine adherence could be addressed as well as the changes required to facilitate it.
Background
Epilepsy is a long-term condition that affects approximately 112,00 children and young people in the United Kingdom. Taking epilepsy medicine as it has been prescribed is crucial for the child or young person so that their health and wellbeing is as good as possible. However, adherence to medicines can be poor and this can have a negative impact on the quality of life.
Research that has specifically sought the views of children and young people (who have an epilepsy diagnosis), as well as their parents/carers, about medicine adherence has not previously been undertaken within the UK – this work seeks to do that. Listening to these voices will provide new and important insights that could help to improve the future lives of children and young people (aged 0-16 years) who are living with epilepsy.
Project Aims
The aim of the research is to gain insight and understanding of:
- The facilitators and barriers to epilepsy medication adherence in children and young people (aged 0-16 years).
- How the barrier(s) to epilepsy medication adherence in this age group could be addressed.
- The changes required to facilitate good epilepsy medication adherence.
Qualitative data collection will focus on the perspectives of:
- Children and young people (aged 5-16 years) who have a diagnosis of epilepsy.
- The parents/carers of children/young people (aged 0-16 years) who have a diagnosis of epilepsy.
Project Activity
The research will draw on a qualitative approach that aims to gain insight into the experiences of the participants.
15-20 interviews (minimum of 10) will be undertaken. The sample will comprise of:
- Parents/carers who have a child/children (aged 0-16 years) with a diagnosis of epilepsy.
- Children, who have a diagnosis of epilepsy, who are aged 5-11 years.
- Young people, who have a diagnosis of epilepsy, who are aged 11-16 years.
Inclusion criteria (parents):
- Fluent in the English language.
- Resident in the UK with their child/young person receiving prescribed epilepsy medication via a UK organisation such as the NHS.
- The parent will have a child/young person who has had a diagnosis of epilepsy for a minimum of two months.
Inclusion criteria (child/young person):
- Aged between 5-16 years .
- Fluent in the English language (either verbally or via, for example, a voice activation system).
- Resident in the UK and receiving prescribed epilepsy medication from a UK organisation such as the NHS.
- Have had a diagnosis of epilepsy for a minimum of two months.
Anticipated or actual outputs
The findings of the research will be provide insight into how epilepsy medication adherence can be enhanced.
The work will inform the development of academic papers and presentations as well as activities that are directed towards families.
Who is involved?
- Lisa Whiting (PI and corresponding researcher), University of Hertfordshire
- Rosemary Godbold, University of Hertfordshire
- Saadye Ali, University of Hertfordshire
- Adam Ali, University of Hertfordshire
Contact
Lisa Whiting, L.Whiting@herts.ac.uk
