Medicine Adherence in Paediatric Epilepsy (MAPE)

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 was 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 focused 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 drew on a qualitative approach that aimed to gain insight into the experiences of the participants.

15-20 interviews (minimum of 10) were undertaken. The sample comprised 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.

Outputs

Download our final report here

Key findings

Summary of findings from the interviews with children and young people 

The children and young people provided an invaluable insight into their experiences of taking epilepsy medication. The key findings revealed that:

• The children and young people’s knowledge of their epilepsy medication and how it works was very limited.
• A change in the normal day-to-day routine had the potential to impact on medication adherence.
• All participants reported that parental support played a substantive role in medication administration and ensuring that the prescribed regime was adhered to.
• The involvement of the child/young person in hospital consultations and appointments was varied indicating an inconsistent approach in this respect.
• None of the children/young people had had any involvement with organisations or charities (they were specifically asked a question about this).

Summary of findings from the interviews with parents

• Parents reported that the diagnosis of epilepsy, and the associated medication, could have a substantive impact on the lives of both the child/young person and parent(s) – both in terms of parental emotions as well as the practical implications and the forward planning that was required to maintain parental vigilance and medication adherence. This impact should not be underestimated.
• Parents wanted their child to have as ‘normal’ a life as possible and organised everyday activities to try to ensure that medication was given appropriately.
• Parents had a thirst for information that related to their child’s epilepsy and their medication regime; however, they were not always aware of how to access appropriate resources, meaning that they frequently turned to charity websites and relevant Facebook pages.
• Parental knowledge of their child’s epilepsy drugs, and how they worked, was limited; this had the potential to impact on medication adherence if they did not realise the full implications of missing a dose or not accurately following the recommended timings for the administration.
• Parents wanted responsive advice and information from health professionals when queries about medication arose (for example, if a child was unable to take their drugs for any reason). The availability of such support was variable, a lack of it could lead to feelings of uncertainty and anxiousness about what action to take; whereas when advice was readily available, parents felt reassured. Overall, parents felt very supported by their health professional team (in particular their consultant and epilepsy nurses); it was felt that going directly to the consultant, who was responsible for the care and management of their child, was the best option when possible.
• Involvement in healthcare decision-making processes was important for the participants; the building a trusting and therapeutic relationship with practitioners, in particular, the medical consultant and epilepsy nurses played a key role in medication adherence.
• The majority of parents took responsibility for all aspects of the epilepsy medication (including ordering, collecting and administering it). One of the concerns for parents was running out of drugs, this worry was exacerbated by the “chasing” [P11] that they sometimes needed to do.
• Many of the parents reported that their son or daughter took their medication without any problems; others commented on difficulties associated with its form, the taste of the drug as well as their child’s stage of development and their other health needs.
• All participants very much wanted to be involved in their child’s healthcare decisions; most parents reported positive experiences of this and even the small number who did not, were able to give examples of how they had vocalised their views.
• Parents were concerned about the side-effects of medication that their child either did, or could, in the future, experience. However, they were very aware of the need for their son or daughter to take the drugs to control the epilepsy; in the main, there were good relationships with the consultant managing their child’s care, with a proactive approach being reported in terms of trying to minimise any adverse effects of the medication.
• As the child matured, parents were trying to relinquish some responsibility for the medication, allowing their child to take ownership; however, this was not without its challenges and could increase parental anxiety.
• Parents’ full understanding of ‘adherence’ was not wholly demonstrated; in addition, they were not all routinely asked about their child’s medication adherence at health appointments. They reported that they understood the need to administer their child’s drugs at certain times, but had less knowledge about how flexible this was. In addition, they were able to describe examples of when they had forgotten to give drugs and what they did when they had then remembered. However, it was not clear if there were times when medication had been forgotten and parents had not recalled the error and therefore not taken any action. On other occasions, parents reported difficulties with administering medication to their child, but did not link this with non-adherence.
• A range of reminder strategies were employed to help parents to remember to administer medication, these included alarms, visible placement of the drugs and dosette boxes (the latter being the most popular).

Similarities and differences between the parents’ and children/young people’s findings

• Parental and child/young person knowledge of the epilepsy medication and how it works was limited.
• It was agreed that a change in the normal day-to-day routine had the potential to impact on medication adherence.
• Children/young people and their parents both reported that parental support played a substantive role in medication administration and ensuring that the prescribed regime was adhered to.
• The parental and children/young people interviews both revealed that involvement of the child/young person in hospital consultations and appointments was varied, thus indicating an inconsistent approach in this respect.

One key difference between the parents and children/young people was, when specifically asked, none of the children/young people was involved with charities or support organisations – this was in stark contrast to parents who had a ‘thirst for knowledge’ and had contacted a range of different groups.

Recommendations

The findings from this study highlighted key recommendations:

• Families understand the importance of medication adherence and try hard to follow the prescribed regime. However, having timely answers to queries when difficulties arise (such as the child vomiting their medicines), is fundamental to their medication administration decision-making. It is recommended that there is an identified point of contact for parents – perhaps having, for example, an epilepsy nurse ‘on-call’ for a region who can offer a prompt and supportive response. We do not believe that this would be too onerous for the personnel involved as parents mentioned that their need for this advice is only occasional.
• The building of a trusting and therapeutic relationship with practitioners, in particular, the medical consultant and epilepsy nurses is crucial; we suggest that strategies continue to be employed to facilitate this, with both parents and children/young people – thus enabling a shared approach to decision-making that underpins medication adherence.
• A disruption to the family routine can impact on medication adherence; the most used and successful reminder system was a dosette box. It is suggested that this strategy is recommended to families and, if feasible, a suitable and developmentally appropriate box is offered to them.
• A number of parents reported that they were not specifically asked about adherence to epilepsy medication, or associated side effects, during hospital appointments. It is suggested that questions about these are included in all consultations.
• It is recommended that families are provided with support services information that provides details of, for example, relevant charities, support networks, reputable sources of healthcare advice, such as the medicines for children factsheets/webpages. Resources that meet the developmental needs of children and young people should be particularly considered.
• We recommend that parents and children/young people are clearly told what adherence to medication actually means, this includes the degree of acceptable flexibility with the timing of medication administration. Families should be encouraged to report, to the child’s medical team, any challenges associated with medication administration (including the taste, form of the drug and any side effects). Appropriate information and support can then be offered.

Next steps:

• The full report is available on this site (seen above) and also at: https://doi.org/10.18745/PB.28773
• We aim to disseminate our work (2025-2026) via a range of mechanisms that include journal publication, conference presentation and a summary to parents, children and young people.

Who was 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