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Table 5 Critical success factors for information and knowledge exchange in clinic contexts for young people with epilepsy during transition aged 13-19 years.

From: Knowledge and information needs of young people with epilepsy and their parents: Mixed-method systematic review

• Availability of accessible, age and gender appropriate epilepsy information on a variety of self-care and lifestyle management issues

• Provision of information in a variety of types and age-appropriate formats likely to attract and engage young people

• Awareness of all factors (e.g. biological etc) that act as facilitators and barriers to information exchange

• Active facilitation by healthcare professionals of practical advice and information resources about daily lifestyle management - including sensitive topics

• Introduce and facilitate information in clinical encounters at staged and regular intervals throughout teenage years

• Active ongoing engagement and follow up by healthcare professionals with young people to ascertain recall and understanding of the information given

• Age-appropriate and individually-tailored facilitation and discussion with young people to encourage them to ask questions

• Actively building rapport by ensuring the same healthcare professionals at clinical encounters

• Awareness that some healthcare professionals are themselves a barrier to positive information exchange as they are unable to relate to young people in age-appropriate ways

• Provide opportunities for young people to talk openly without parental presence

• Parents need consistent and ongoing epilepsy information, practical advice and high levels of support from healthcare professionals to enable their child to safe self-care and become independent

• Awareness that some young people will need ongoing support and high levels of repeated information in order to take on some or all of their self-care

• Engagement with young people to inform service delivery and organisation of care (e.g. length and frequency and clinic consultation and other modes of follow up).

• Regular and meaningful review of the effectiveness of service provision and strategies to promote independence and self-care with involvement of young people as service users.

• Epilepsy charities produce a wealth of information, which appears to be under utilised by healthcare professionals