In this series featuring information for patients and professionals taken from SIGN’s evidence-based guidelines we reproduce the information for discussion with children, young people and their carers from SIGN guideline number 81, on management of epilepsies in children and young people.
Epilepsies in children and young people
Families who have a child with epilepsy have a right to clear, accurate and appropriate information about the condition including the specific epilepsy syndrome, its treatment and the implications for everyday living.
Surveys of people affected by epilepsy have reported that up to 90% of them wanted more information about the cause of epilepsy, effects and interactions of drugs and the avoidance of potentially dangerous situations. As people forget or fail to take in much of what they are told during clinic visits, written information, helpline telephone numbers and contact details of voluntary organisations should be given to all families (see Box 1, below).
Almost as important as the quality of information is the manner in which it is given. People with epilepsy place great importance on having a doctor who is approachable, communicative and knowledgeable. Doctors have been criticised for failing to explain epilepsy properly to young people and neglecting the practical issues relating to everyday life. Many people prefer talking to an epilepsy nurse or someone from a voluntary organisation with whom they feel more at ease. Information may have to be repeated on different occasions to ensure understanding.
Different people have different information needs at different times and the person giving the information should be sensitive to and guided by the family’s needs at that particular time. A checklist is useful in giving a structure to discussion and ensuring important points are covered. This should be kept in the patient’s records,ensuring other professionals are aware of what information has already been given. A sample information checklist is shown in Figure 1 (below).
|Figure 1: Example information checklist|
Sensitivity to the needs of individual families should guide the clinician on how much information to give at the first consultation.
Information for families should be suited to their understanding, making adjustments for different sociocultural contexts. Observations of consultations reveal that information is often directed at parents rather than children. Children with epilepsy were less able to explain their condition than children with asthma or diabetes.
Opportunities should be available for open discussion between healthcare professionals and the child or young person.
Parents of young children value written or video material to share with relatives and others who look after their children. Parents also want to discuss the implications of their child’s epilepsy with someone knowledgeable.
- All children with epilepsy and their carers should be given information appropriate to their condition. A summary of the content of these discussions should be recorded.
- Families should be given information to take home in the most suitable format making adjustments for different sociocultural contexts, e.g. leaflets, fact sheets, videos.
- Information should be repeated over time and understanding assessed.
- A checklist should be used to help healthcare professionals deliver appropriate information to children, families and carers.
Information for schools
Families are concerned about their child having a seizure at school and the possible associated stigma. School staff are keen to provide a safe environment for the child but this can lead to the child not being allowed to participate fully in some activities. Schools should be given written information and school staff should be offered further discussion on epilepsy and its management, ideally involving the parent(s). Some voluntary organisations have leaflets on epilepsy safety specifically written for teachers.
Discussions about any possible restrictions on activities within the school should always involve the parents, the child, school staff and a health professional/voluntary sector worker who is knowledgeable about epilepsy.
There may be additional risk of minor injuries for some children who have epilepsy but inclusion and independence should be prioritised and joint decisions made about risk and safety.
Many children feel that more open discussion about epilepsy and education of their peers is the best way of reducing stigma and dispelling myths leading to greater acceptance of them and their seizures.The child should make the decision about what information is given to classmates. Epilepsy awareness training can be provided by health professionals, field workers or staff from voluntary organisations.
Children with epilepsy which is difficult to control may require extra support to enable them to participate in all aspects of the curriculum. Educational and clinical psychologists can be helpful in supporting school staff and the child and family throughout school life. If seizures are not controlled or treatment is causing adverse effects, this should be taken into account at exam time.
When children have a history of prolonged seizures, training on administration of emergency (or rescue) medication should be given to school staff who are willing to do this, and a care plan agreed with the school and family.
Training of school staff (usually by the school nurse) in the administration of emergency medication should be updated regularly. Provision should be made for children with a short recovery period to be allowed to stay in school and rejoin the class when able.
- Children should be enabled to participate in the full range of school activities.
- Children who have epilepsy should have a written care plan for their epilepsy, drawn up in agreement with the school and family.
- Epilepsy awareness training and written information should be offered to schools.
|Box 1: Sources of further information for patients and carers|
| David Lewis Centre for Epilepsy
Mill Lane, Warford, Alderley Edge, Cheshire SK9 7UD
Tel: 01565 640000
|Enlighten –– Action for Epilepsy
5 Coates Place, Edinburgh EH3 7AA
Tel: 0131 226 5458 Fax: 0131 220 2855
Email: firstname.lastname@example.org Website: www.enlighten.org.uk
New Anstey House, Gate Way Drive,Yeadon, Leeds LS19 7XY
Helpline: 0808 800 5050 Fax: 0808 800 5555
Email: email@example.com Website: www.epilepsy.org.uk
PO Box 112, Wantage, Oxon OX12 8XT
24 hour contact line: 01235 772852 Tel: 01235 772850
100 Wellington Street, Glasgow G2 6DH
Tel: 0141 248 4125 Fax: 0141 248 5887
48 Govan Road, Glasgow G51 1JL
Helpline: 0808 800 2200 Fax: 0141 419 1709
Email: firstname.lastname@example.org Website: www.epilepsyscotland.org.uk
| Joint Epilepsy Council of the UK and Ireland
Tel: 01943 871852
National Association for Welfare of Children in Hospitals
|National Centre for Young People with Epilepsy (NCYPE)
St Piers Lane, Lingfield, Surrey RH7 6PW
Tel: 01342 832243
|National Society for Epilepsy
Chesham Lane, Chalfont St Peter, Bucks SL9 ORJ
Helpline: 01494 601400 Tel: 01494 601300 Fax: 01494 871927
Quarriers Village, Bridge of Weir, Renfrewshire PA11 3SX
Tel: 01505 616000 Fax: 01505 613906
Email: email@example.com Website: www.quarriers.org.uk
|Adapted from SIGN 81. Diagnosis and management of epilepsies in children and young people. Edinburgh: Scottish Intercollegiate Guidelines Network, 2005.|