CPD-Education and self-assessment| Volume 10, ISSUE 8, P605-614, December 2001

A systematic overviewa decade of research'. The information and counselling needs of people with epilepsy

      This paper is only available as a PDF. To read, Please Download here.


      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.




        • De Boer H.M
        Epilepsy and society.
        Epilepsia. 1995; 36 (Suppl. 1): S8-11
        • Betts T
        Epilepsy services, what people need, what they want, what they get.
        Acta Neurologica Scandinavica. 1992; 2: 95-101
        • Cockerell O.C
        • Hart Y.M
        • Sander J.W.A.S
        • Shorvon S.D
        The cost of epilepsy in the United Kingdom: an estimation based on the results of two population-based studies.
        Epilepsy Research. 1994; 18: 249-260
        • Kale R
        Bringing epilepsy out of the shadows.
        British Medical Journal. 1997; 315: 2-3
        • Antonak R.F
        • Livneh H
        A review on psychosocial adjustment to impairment among persons with epilepsy.
        Journal of Epilepsy. 1992; 5: 194-205
        • Scambler G
        Epilepsy. Tavistock/Routledge, London1989
        • MacDondald D
        • Torrance N
        • Wood S
        • Womersley J
        General practice based nurse specialiststaking a lead in improving the care of people with epilepsy.
        Seizure. 2000; 9: 31-35
        • Shorvon S.D
        • et al.
        Services for patients with epilepsy.
        Report of a Clinical Standards Advisory Group. Department of Health, London1999
        • Hart Y.M
        Existing care for epilepsy.
        in: Chadwick D Quality of Life and Quality of Care in Epilepsy. 1990: 16-27
        • Santilli N
        Psychosocial aspects of epilepsy: education and counselling for patients and families.
        in: Wyllie E The Treatment of Epilepsy: Principles and Practices. Lea and Febiger, USA1993
        • Brown S
        • Betts T
        • Chadwick D
        • Hall B
        • Shorvon S.D
        • Wallace S
        Clinical review, an epilepsy needs document.
        Seizure. 1993; 2: 92-103
        • Schneider J.W
        • Conrad P
        Medical and sociological typologies: the case of Epilepsy.
        Social Science and Medicine. 1981; 15a: 211-219
        • Scambler G
        • Hopkins A
        Being epileptic: coming to terms with stigma.
        Sociology of Health and Illness. 1986; 8: 26-43
        • Upton D
        • Thompson P.J
        Effectiveness of coping strategies employed by people with chronic epilepsy.
        Journal of Epilepsy. 1992; 5: 119-127
        • Baker G
        • Jacoby A
        A study into life with epilepsy.
        Epilepsy Today. 1995; 31: 8-10
        • Lenz E.R
        Information seeking: a component of client decisions and health behaviour.
        Advances in Nursing Science. 1984; 3: 59-72
        • Cohen R.F
        Measuring attitudes toward chronic illness.
        in: Frank-Stromborg Instruments for Clinical Research. Jones and Bartlett, 1992: 269-295
        • Meichenbaum D
        • Turk D.D
        Facilitating Treatment Adherence. Plenum Press, New York1987
      1. S. Kendall, D. Thompson, L. Couldridge, A. March, Investigating the Information Needs of Carers of People with Epilepsy

        • Silagy C
        • Muir J
        • Coulter A
        • Thorogood M
        • Yudkin P
        • Roe L
        Lifestyle advice in general practice; rates recalled by patients.
        British Medical Journal. 1992; 305: 871-874
        • Wiederholt J.B
        • Clarride B.R
        • Svarstad B.L
        Verbal consultation regarding prescription drugs: findings from a statewide study.
        Medical Care. 1992; 30: 159-173
        • Roter D.L
        • Knowles N
        • Somerfield M
        • Baldwin J
        Routine communication in sexually transmitted disease clinics: an observational study.
        American Journal of Public Health. 1990; 80: 605-606
        • NHS Centre for Reviews and Dissemination
        Undertaking Systematic Reviews of Research on Effectiveness, CRD Guidelines for those Carrying out or Commissioning Reviews. Report 4. York Publishing Services Ltd, 1996
        • McKinnel I
        • Eliot J
        • Frankish R
        The Cochrane Library self-training Guide. York: NHS Centre for Reviews and Dissemination, 1999
        • Epilepsy Research Group
        A Seven Year Report of the Clinical and Research Work of the Epilepsy Group of The National Society for Epilepsy, The National Hospital for Neurology and Neurosurgery, The Institute of Neurology, University College London Hospitals. 1990—1996
        • Chappell B
        Epilepsy: patient views on their condition and treatment.
        Seizure. 1992; 1: 103-109
        • Chappell B
        • Smithson W.H
        Patient views on primary care services for epilepsy and areas where additional professional knowledge would be welcome.
        Seizure. 1998; 7: 447-457
        • Goldstein LH
        • Minchin L
        • Stubbs P
        • Fenwick P.B.C
        Are what people know about their epilepsy and what they want from an epilepsy service related?.
        Seizure. 1997; 6: 425-442
        • Hoch D.B
        • Norris D
        • Lester J.E
        • Ari D.M
        Information exchange in an epilepsy forum on the World Wide Web.
        Seizure. 1999; 8: 30-34
        • Jain P
        • Patterson V.H
        • Morrow J.I
        What people with epilepsy want from a hospital clinic.
        Seizure. 1993; 2: 75-78
        • Hayden M
        • Penna C
        • Buchanan N
        Epilepsy: patient perceptions of their condition.
        Seizure. 1992; 1: 191-197
        • Long L
        • Reeves A.L
        • Layne Moore J
        • Roach, Pickering CT
        An assessment of epilepsy patients' knowledge of their disorder.
        Epilepsia. 2000; 41: 727-731
        • Dilorio C
        • Faherty B
        • Manteuffel B
        Learning needs of persons with epilepsy a comparison of perceptions of persons with epilepsy, nurses and physicians.
        Journal of Neuroscience Nursing. 1993; 25: 22-29
        • Scambler A
        • Scambler G
        • Ridsdale L
        • Robins D
        Towards an evaluation of the effectiveness of an epilepsy nurse in primary care.
        Seizure. 1996; 5: 255-258
        • Ridsdale L
        • Morgan M
        • O'Connor C
        Promoting self-care in epilepsy: the views of patients on the advice they had received from specialists, family doctors and an epilepsy nurse.
        Patient Education and Counseling. 1999; 37: 43-47
        • Ridsdale L
        • Kwan
        • Cryer C
        Epilepsy care evaluation group.
        Epilepsia. 2000; 41: 1014-1019
        • Usiskin S.C
        The role of counselling in an out-patient epilepsy clinic: a three year study.
        Seizure. 1993; 2: 111-114
        • Mills N
        • Bachmann M.O
        • Harvey I
        • Hine I
        • McGowan M
        Effect of a primary care-based epilepsy specialist nurse service on quality of care from the patients perspective: quasi-experimental evaluation.
        Seizure. 1999; 8: 1-7
        • Archibald J
        Do patients know enough about epilepsy?.
        Nursing Times. 1993; 1: 89
        • Beech L
        Knowledge of epilepsy among relatives of the epilepsy sufferer.
        Seizure. 1992; 1: 133-135
        • Buck D
        • Jacoby A
        • Baker G.A
        • Graham-Jones S
        • Chadwick D.W
        Patients' experiences of and satisfaction with care for their epilepsy.
        Epilepsia. 1996; 37: 841-849
        • Dawkins J.L
        • Crawford P.M
        • Stammers T.G
        Epilepsy: a general practice study of knowledge and attitudes among sufferers and non-sufferers.
        British Journal of General Practice. 1993; 43: 453-457
        • Hartshorn J.C
        • Byers V.L
        Importance of health and family variables related to quality of life in individuals with uncontrolled seizures.
        Journal of Neuroscience Nursing. 1994; 26: 288-297
        • Hart Y.M
        • Shorvon S.D
        The nature of epilepsy in the general population. II. Medical care.
        Epilepsy Research. 1995; 21: 51-58
        • Hills M.D
        • Baker P.G
        Relationships among epilepsy, social stigma, self esteem and social support.
        Journal of Epilepsy. 1992; 5: 231-238
        • Millet C.J
        • Fish D.R
        • Thompson P.J
        A survey of epilepsy-patient perceptions of video-game material/electronic screens and other factors as seizure precipitants.
        Seizure. 1997; 1: 1-3
        • Mills N
        • Bachmann M
        • Harvey I
        • McGowan M
        • Hine I
        Patients' experience of epilepsy and health care.
        Family Practice. 1997; 14: 117-123
        • Ridsdale L
        • Robins D
        • Fitzgerald A
        • Jeffery S
        • McGee L
        • The Epilepsy Care Evaluation Group
        Epilepsy monitoring and advice recorded: general practitioners' views, current practice and patients' preferences.
        British Journal of General Practice. 1996; 46: 11-14
        • Scambler G
        Patient expectations of epilepsy and of doctors who manage epilepsy.
        Seizure. 1994; 3: 287-293
        • Thapar A.K
        Care of patients with epilepsy in the community: will new initiatives address old problems?.
        British Journal of General Practice. 1996; 46: 37-42
        • Wilde M
        • Haslam C
        Living with epilepsy: a qualitative study investigating the experiences of young people attending outpatients clinics in leicester.
        Seizure. 1996; 5: 63-72
        • Averis A.K
        Patients' opinions: having a say in epilepsy service provision down under.
        Seizure. 1996; 5: 57-61
        • Jarvie S
        • Espie C.A
        • Brodie M.J
        The development of a questionnaire to assess knowledge of epilepsy: knowledge of own condition.
        Seizure. 1993; 2: 187-193
        • Tedman S
        • Thornston E
        • Baker G
        Development of a scale to measure core beliefs and perceived self-efficacy in adults with epilepsy.
        Seizure. 1995; 4: 221-231
        • Ridsdale L
        • Robins D
        • Cryer C
        • Williams H
        • The Epilepsy Care Evaluation Group
        Feasibility and effects of nurse run clinics for patients with epilepsy in general practice: ramdomised controlled trial.
        British Medical Journal. 1997; 314: 120-122
        • Taylor M.P
        • Readman S
        • Hague B
        • Boulter V
        • Hughes L
        • Howell S
        A district epilepsy service, with community based specialist liaison nurses and guidelines for shared care.
        Seizure. 1995; 4: 221-231
        • Morrow J
        An assessment of an epilepsy clinic.
        in: Chadwick D Quality of Life and Quality of Care in Epilepsy. Royal Society of Epilepsy, 1990: 96-105
        • Wallace H.K
        • Shorvon S.D
        • Hopkins A
        An audit of the organization of adult epilepsy services in the UK: a comparative review of epilepsy and general neurology clinics.
        Seizure. 1997; 6: 185-191
        • Helgeson D.C
        • Mittan R
        • Tan S.Y
        • Chayasirisobhon S
        Sepulveda epilepsy education: the efficacy of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy.
        Epilepsia. 1990; 31: 75-82
        • Collings J.A
        Psychosocial well-being and epilepsy: an empirical study.
        Epilepsia. 1990; 31: 418-426