Hostname: page-component-586b7cd67f-dsjbd Total loading time: 0 Render date: 2024-11-27T14:44:22.071Z Has data issue: false hasContentIssue false
  • English
  • Français

Families with a Child with Epilepsy: A Sociological Contribution

Published online by Cambridge University Press:  31 July 2008

H. C. Mulder  and
T. P. B. M. Suurmeijer
H. C. Mulder
Affiliation:
Department of Sociology, State University, Groningen, The Netherlands
T. P. B. M. Suurmeijer
Affiliation:
Department of Sociology, State University, Groningen, The Netherlands
Get access Rights & Permissions [Opens in a new window]

Summary

This paper reports a pilot study of thirteen children with epilepsy and their families; the parents' efforts to obtain help for the child and the effect of the child's disability on the family relationships are described. About half of the parents did not consult the family doctor immediately after the first appearance of signs of epilepsy (patient delay). About a quarter of the family doctors delayed referral of the patient with epilepsy to the specialist (doctor's delay). Another 3 years passed, on average, before the patient reached a special centre or clinic for epilepsy (specialist delay); in three-quarters of all cases the first step to get there was taken by the parents and not by the specialist and chance plays an important role in determining how the entry into this third echelon is achieved. Reasons for the search for more specialized help were: dissatisfaction with the results of the treatment and the kind of rapport with the second echelon specialist. The out-patient clinic for epilepsy is generally favourably commented on because the expert medical advice is combined with the availability of a social worker, thus offering support with social problems also. As regards the influence of the illness on the family, there is evidence that family life is disrupted to a greater or less extent. The parents experience psychological stress and are generally apprehensive lest something will happen to their child. In a number of cases the relationships between siblings are rather disturbed. The parents, especially mothers, tend to (over-)protect the child with epilepsy. The child with epilepsy has a relatively isolated position in his social environment; he has few informal or formal social contacts with his peer group. The condition epilepsy contributes to a diminution of expectations for the future and curtailment of scholastic behaviour.

Type
Research Article
Information
Journal of Biosocial Science , Volume 9 , Issue 1 , January 1977 , pp. 13 - 24
Copyright
Copyright © 1977, Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bladergroen, W.J. (1967) De situatie van het gehandicapte kind in het gezin en de samenleving. Tijdschr. Revalidatie, 13, 227.Google Scholar
Blood, R.O. (1972) The Family. The Free Press, New York.Google Scholar
Bowerman, C.E. & Elder, G.H. Jr, (1964) Variations in adolescent perception of family power structure. Am. social. Rev. 29, 551.CrossRefGoogle Scholar
Bradburn, N.M. (1963) Achievement and father dominance in Turkey. J. abnorm. soc. Psychol. 67, 464.CrossRefGoogle ScholarPubMed
Dager, E.Z. (1964) Socialization and personality development in the child. In: Handbook of Marriage and the Family, pp. 740–781. Edited by Christensen, H. T.. Rand MacNally, Chicago.Google Scholar
Debuskey, M. (1970) Orchestration of care. In: The Chronically III Child and his Family, pp. 4–21. Edited by Debuskey, M.. Thomas, Springfield, III.Google Scholar
Elder, H.G. Jr, (1965) Family structure and educational attainment: a cross-national analysis. Am. social. Rev. 30, 81.CrossRefGoogle ScholarPubMed
Goldin, G.J., Perry, S.L., Margolin, R.J., Stotsky, B.A. & Foster, J.C. (1971) The Rehabilitation of the Young Epileptic. Dimensions and Dynamics. Lexington Books, Heath, Lexington, Mass.Google Scholar
Gregoriades, A.D. (1972) A medical and social survey of 231 children with seizures. Epilepsia, 13, 13.CrossRefGoogle ScholarPubMed
Gresnigt, H.A.A. (1973) Ouders van een diep-zwakzinnig kind. In: Ouders en Gezinnen met een Diep-zwakzinnig Kind, pp. 1–156. Edited by Gresnigt, H. A. A. & Strengers, A. M. C. Gresnigt. Swets en Zeitlinger, Amsterdam.Google Scholar
Gresnigt-Strengers, A.M.C. (1973) Gezinnen met een diep-zwakzinnig kind. In: Ouders en Gezinnig met een Diep-zwakzinnig Kind, pp. 157–309. Edited by Gresnigt, H. A. A. & Strengers, Gresnigt. Swets en Zeitlinger, Amsterdam.Google Scholar
Hansen, D.A. & Hill, R. (1964) Families under stress. In: Handbook of Marriage nd the Family. pp. 782–879. Edited by Christensen, H. T.. Rand MacNally, Chicago.Google Scholar
Hartlage, L.C., & Green, J.B. (1972) The relation of parental attitudes to academic and social achievement in epileptic children. Epilepsia, 13, 21.CrossRefGoogle ScholarPubMed
Heek, F.Van, Vercruysse, E. V. W., Veld-Langeveld, H.M. IN 'T., Kuiper, G., & Braam, A. Van (1958) Sociale Stijging en Doling in Nederland. Stenfert Kroese, Leiden.Google Scholar
Hewett, S. (1970) The Family and the Handicapped Child. Allen and Unwin, London.Google Scholar
Hill, R. & Rodgers, R.G. (1964) The developmental approach. In: Handbook of Marriage and the Family, pp. 171–211. Edited by Christensen, H. T.. Rand MacNally, Chicago.Google Scholar
Philipsen, H. (1968) Afwezigheid Wegens Ziekte. Instituut voor Preventieve Geneeskunde, Leiden.Google Scholar
Pless, I.B. & Roghmann, K.J. (1971) Chronic illness and its consequences: observations based on three epidemiologic surveys. J. Pediat. 79, 351.CrossRefGoogle ScholarPubMed
Pond, D.A., Bidwell, B.H. & Stein, L. (1960) A survey of epilepsy in fourteen general practices: demographic and medical data, J. Neth. Soc. Psychiat. Neural. 63, 217.Google ScholarPubMed
Rehberg, R.A., Sinclair, J. & Schafer, W.E. (1970) Adolescent achievement behavior, family authority structure and parental socialization practices, Am. J. Social. 75, 1012.CrossRefGoogle Scholar
Rodin, E.A. (1972) Medical and social prognosis in epilepsy. Epilepsia, 13, 121.CrossRefGoogle ScholarPubMed
Ross, E.M. & Evans, D. (1972) Epilepsy in Bristol secondary school children. Epilepsia, 13, 7.CrossRefGoogle ScholarPubMed
Safilios-Rothschild, C. (1970) The Sociology and Social Psychology of Disability and Rehabilitation. Random House, New York.Google Scholar
Schaefer, E.S. (1959) A circumplex model for maternal behavior. J. abnorm. soc. Psychol. 59, 226.CrossRefGoogle ScholarPubMed
Smits, H. (1970) Een Katamnestisch Onderzoek van een Groep Patiëten uit het Instituut voor Epilepsiebestrijding te Heemstede. Stafleu's wetenschappelijke uitgeverij, Leiden.Google Scholar
Tulder, J.J.M. Van (1962) De Beroepsmobiliteit in Nederland van 1919 tot 1954. Stenfert Kroese, Leiden.Google Scholar
Walters, J. & Stinnett, N. (1971) Parent-child relationships: a decade review of research, J.Marr.&Fam. 33, 70.Google Scholar
Zielińsky, J.J. (1972) Social prognosis in epilepsy. Epilepsia, 13, 133.CrossRefGoogle Scholar