We conducted an exploratory RCT to examine feasibility and preliminary efficacy for a manual-based psychosocial group intervention aimed at improving epilepsy knowledge, self-management skills, and quality of life in young people with epilepsy. Method: Eighty-three participants (33:50 m/f; age range 12-17 years) were randomized to either the treatment or control group in seven tertiary paediatric neuroscience centres in the UK, using a wait-list control design. Participants were excluded if they reported suicidal ideation and/or scored above the cut off on mental health screening measures, or if they had a learning disability or other neurological disorder. The intervention consisted of six weekly 2-hour sessions using guided discussion, group exercises and role-plays facilitated by an epilepsy nurse and a clinical psychologist. Results: At three month follow up the treatment group (n = 40) was compared with a wait-list control group (n = 43) on a range of standardized measures. There was a significant increase in epilepsy knowledge in the treatment group (p = 0.02). Participants receiving the intervention were also significantly more confident in speaking to others about their epilepsy (p = 0.04). Quality of life measures did not show significant change. Participants reported the greatest value of attending the group was: Learning about their epilepsy (46%); Learning to cope with difficult feelings (29%); and Meeting others with epilepsy (22%). Caregiver and facilitator feedback was positive, and 92% of participants would recommend the group to others. Conclusion: This brief psychosocial group intervention was effective in increasing participants' knowledge of epilepsy and improved confidence in discussing their epilepsy with others. We discuss the qualitative feedback, feasibility, strengths and limitations of the PIE trial.
There has been considerable evolution in epilepsy healthcare for children over the last decade in the United Kingdom. There has been no single explanation for this. The development of national clinical guidelines, locally delivered but nationally designed educational programmes, nation-wide clinical audit, clinical networks and development of designated services have all had complimentary roles in enabling the implementation of national recommendations for the development of epilepsy care. These models may be applicable to other healthcare settings outside the UK.
In the third article of a series, Diane Flower looks at safety issues in school activities for children with epilepsy, seizure triggers, and emergency planning in schools.
Most schools will have one or more children with epilepsy, therefore it is important for school nurses to understand the condition. In this first article of a series, Diane Flower provides an overview of the different types of seizures and the diagnosis of epilepsy.
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