Systematic review of epilepsy self-management interventions integrated with a synthesis of children and young people's views and experiences

Authors

  • Sheila A. Lewis BSc PhD RGN,

    Nurse Clinician in Epilepsy, Corresponding author
    1. Centre for Health-Related Research, School of Healthcare Sciences, Bangor University, UK
    2. The Walton Centre NHS Foundation Trust, Betsi Cadwaladr University Health Board, North Wales, UK
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  • Jane Noyes DPhil MSc RN,

    Professor Noreen Edwards Chair
    1. Health Services Research and Child Health, Centre for Health-Related Research, School of Healthcare Sciences, Bangor University, UK
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  • Richard P. Hastings PhD

    Professor
    1. Centre for Educational Development Appraisal and Research, University of Warwick, UK
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Abstract

Aim

To determine the effectiveness of epilepsy self-management interventions and explore the views and experiences of medication and seizures by children and young people.

Background

Experiencing seizures and side-effects from anti-epileptic medicines have negative impacts on children and young people managing their epilepsy. Children commonly experiment with not taking epilepsy medication as prescribed and engage in unhealthy lifestyles.

Design/Review Methods

Mixed-method systematic review with theory development. Cochrane quantitative methods and thematic synthesis of qualitative and survey evidence.

Data Sources

Eight databases were searched from earliest dates to July 2013.

Results

Nineteen studies were included. Meta-analysis was not possible. Zero of nine intervention studies showed improvement in anti-epilepsy medication adherence. Skill-based behavioural techniques with activities such as role play and goal setting with young people increased epilepsy knowledge and seizure self-management (small effects). Intervention studies were methodologically weak and no studies reported if improvement in self-management was sustained over time. Synthesis of nine qualitative and one mixed-method studies generated six themes encapsulating anti-epilepsy medication and epilepsy effects. There was a lack of fidelity between intervention programme theories and what children and young people found difficult with medication self-management and managing the effects of epilepsy.

Conclusion

Children and young people knowingly and/or unknowingly take risks with their epilepsy and give reasoned explanations for doing so. There are no effective interventions to change epilepsy medication adherence behaviours. There is an urgent need for more innovative and individually tailored interventions to address specific challenges to epilepsy self-management as identified by children and young people themselves.

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