A systematic overview--a decade of research'. The information and counselling needs of people with epilepsy.
· Couldridge L,
· Kendall S,
· March A.
PMID: 11792167
[PubMed - indexed for MEDLINE]

National Society for Epilepsy, Buckinghamshire. lynettec@epilepsynse.co.uk

This paper explores the background to epilepsy in terms of medical impact and psychosocial effects. The argument that information and counselling may be central to the person with epilepsy is explored.

The evidence from primary research published between 1990 and 2000 investigating the information and counselling needs of people with epilepsy is appraised and synthesized.

This paper seeks to answer the following questions:

• What are the information and counselling needs of people with epilepsy?
• What are the preferred formats, timing and delivery of information and counselling?
• What are the outcomes of information giving and counselling for people with epilepsy?

The review suggests that there are unmet needs for personal and general information about epilepsy which may include individual or group education and counselling. Information related to gaining control for people with epilepsy and targeted public education may contribute to improved quality of life for people with epilepsy.

Information is required which is individually relevant and could be delivered in small groups or as part of an individual counselling service. Specialist epilepsy clinics and specialist nurses can improve patient knowledge and communication and provide an effective and high quality service for people with epilepsy.

Copyright 2001 BEA Trading Ltd.

The information needs of carers of adults diagnosed with epilepsy
· Kendall S,
· Thompson D,
· Couldridge L.
PMID: 15324830 [PubMed - indexed for MEDLINE]

Centre for Research in Primary and Community Care, Faculty of Health and Human Sciences, University of Hertfordshire, College Lane, Hatfield, Herts AL10 9AB, UK. s.kendall@herts.ac.uk

AIM: The aim of the study was to explore the information needs of informal carers, and how information from health professionals can become more effective for families caring for people with epilepsy.

METHODS: A combined methodology was used, comprising an interview study and a survey. Twelve in-depth interviews with carers were carried out. The questionnaire was developed using the interview data, to which 70 carers responded.

RESULTS: Four main themes have been drawn from the study.

• Carers' of people with epilepsy have a need for improved and more appropriate levels of information giving by health professionals in both primary and secondary care.
• Carers' perceived self-efficacy expectations in seeking information are positive but they do not always feel listened to.
• Carers' prefer to receive information in a one-to-one setting but also need information from formats other than leaflets.
• Carers' perceive barriers to having their information needs met, such as their needs being unrecognised in relation to the person with epilepsy.