Hostname: page-component-77c89778f8-m42fx Total loading time: 0 Render date: 2024-07-17T09:10:46.861Z Has data issue: false hasContentIssue false

Intractable Childhood Epilepsy and Maternal Fatigue

Published online by Cambridge University Press:  02 December 2014

Mohammed M.S. Jan*
Affiliation:
Department of Pediatrics, King Abdulaziz University Hospital, Jeddah, Kingdom of Saudi Arabia
*
Department of Pediatrics (Neurology), King Abdulaziz University Hospital, P.O. Box 80215. Jeddah 21589, Kingdom of Saudi Arabia.
Rights & Permissions [Opens in a new window]

Abstract

Core share and HTML view are not available for this content. However, as you have access to this content, a full PDF is available via the ‘Save PDF’ action button.
Background:

Mothers of children with intractable epilepsy are generally stressed and experience more emotional problems. Fatigue may affect their productivity, social interactions, and their ability to adequately take care of their children. The objectives were to examine the relationship between intractable childhood epilepsy and maternal fatigue, and explore possible contributing factors.

Methods:

Sixty-four consecutive mothers of children with intractable epilepsy were identified prospectively. Exclusion criteria included degenerative/metabolic disorders or life threatening illness, such as brain tumors. Fatigue was measured using a standardized 11-item questionnaire, which has been revalidated in an Arabic speaking population.

Results:

Mothers' ages were 24-45 years (mean 34) and ages of their epileptic children were 1-15 years (mean 6.7). Most children (64%) had epilepsy for >2 years, were on >1 antiepileptic drug (AED) (72%), and had daily seizures (47%). Thirty-four (54%) of the children had motor deficits and 83% had mental retardation (severe in 41%). Twenty-eight (44%) mothers were fatigued. Factors associated with increased maternal fatigue included child's age <2 years (p=0.01), cryptogenic epilepsy (p=0.03), and severe motor deficits (p=0.04). Factors associated with lowered fatigue included performing regular exercise (p=0.006), lack of mental retardation (p=0.01), seizure control (p=0.05), using one AED (p=0.002), infrequent ER visits (p=0.005), and lack of recent hospitalization (p=0.005).

Conclusion:

Mothers of children with intractable epilepsy are increasingly fatigued. Several correlating factors were identified, mostly related to seizure control, mental and physical handicap. Strategies to manage the problem include proper education, seizure control, participation in regular exercise, social support, and psychological counseling.

Résumé:

RÉSUMÉ:Contexte:

Les mères d’enfants présentant une épilepsie réfractaire au traitement éprouvent un haut niveau de stress et présentent plus de problèmes émotifs. La fatigue peut affecter leur productivité, leurs interactions sociales et leur capacité à prendre soin adéquatement de leurs enfants. Cette étude avait pour objectif d’examiner la relation entre l’épilepsie réfractaire de l’enfance et la fatigue maternelle et d’explorer les facteurs qui y contribuent.

Méthodes:

Soixante-quatre mères d’enfants atteints d’épilepsie réfractaire ont été identifiées consécutivement de façon prospective. Les mères d’enfants atteints de maladies dégénératives ou métaboliques ou de maladies potentiellement fatales comme les tumeurs cérébrales étaient exclues. La fatigue était mesurée au moyen d’un questionnaire standardisé de 11 items qui a été revalidé dans la population de langue arabe.

Résultats:

Les mères étaient âgées de 24 à 45 ans (âge moyen de 34 ans et l’âge moyen de leurs enfants épileptiques était de 1 à 15 ans (âge moyen de 6,7 ans). La plupart des enfants (64%) étaient épileptiques depuis plus de 2 ans, prenaient plus d’un médicament antiépileptique (72%) et avaient des crises quotidiennes (47%). Trente-quatre (54%) des enfants avaient des déficits moteurs et 83% avaient un retard mental qui était sévère chez 41%. Vingt-huit (44%) des mères étaient fatiguées. Les facteurs associés à une fatigue maternelle plus sévère étaient les suivants : un enfant de moins de 2 ans (p = 0,01), une épilepsie cryptogénique (p = 0,03) et des déficits moteurs sévères (p = 0,004). Les facteurs associés à une fatigue moindre étaient l’activité physique régulière (p = 0,006), l’absence de retard mental (p = 0,01), le contrôle des crises (p = 0,05), l’utilisation d’un seul antiépileptique (p = 0,002), des visites peu fréquentes au service d’urgences (p = 0,005) et l’absence d’hospitalisation récente (p = 0,005).

Conclusions:

Les mères des enfants atteints d’épilepsie réfractaire éprouvent de plus en plus de fatigue. Plusieurs facteurs qui y sont corrélés ont été identifiés, surtout en rapport avec le contrôle des crises et le handicap mental et physique. Parmi les stratégies pour gérer le problème citons une éducation adéquate, le contrôle des crises, l’activité physique régulière, le soutien social et la consultation en psychologie.

Type
Original Articles
Copyright
Copyright © The Canadian Journal of Neurological 2006

References

1. Annegers, JF. Epidemiology and genetics of epilepsy. Neurol Clin. 1994;12:1529.Google Scholar
2. El-Hazmi, MAF, Warsy, AS. Genetic disorders among Arab populations. Saudi Med J. 1996;17:10823.Google Scholar
3. Austin, JK, Smith, S, Risinger, MW, McNehs, AM. Childhood epilepsy and asthma comparison of quality of life. Epilepsia. 1994;35:60815.Google Scholar
4. Farwell, JR, Dodrill, CB, Batzel, LW. Neuropsychological abilities of children with epilepsy. Epilepsia. 1985;26:395400.Google Scholar
5. Kotagal, P, Rothner, AD, Erenberg, G, Cruse, RP, Wyllie, E. Complex partial seizures of childhood onset. Arch Neurol. 1987;44:117780.CrossRefGoogle ScholarPubMed
6. Baker, GA, Jacoby, A, Buck, D, Stalgis, C, Monnet, D. Quality of life of people with epilepsy: a European study. Epilepsia. 1997;38(3):35362.Google Scholar
7. Buck, D, Baker, GA, Jacoby, A. Patient’s experiences of injury as a result of epilepsy. Epilepsia. 1997;38:43944.Google Scholar
8. Harvey, AS, Nolan, T, Carlin, JB. Community-based study of mortality in children with epilepsy. Epilepsia. 1993;34:597603.Google Scholar
9. McWhinney, IR. A Textbook of Family Medicine. 2nd ed. New York: Oxford University Press; 1989.Google Scholar
10. McIlvenny, S, DeGlume, AM, Elewa, M, Fernandez, OT, Dormer, P. Factors associated with fatigue in a family medicine clinic in the United Arab Emirates. Family Practice. 2000;17:40813.Google Scholar
11. Camfield, C, Breau, L, Camfield, P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia. 2001;42(1):10412.Google Scholar
12. Mattie-Luksic, M, Javornisky, G, DiMario, FJ. Assessment of stress in mothers of children with severe breath-holding spells. Pediatrics. 2000;106(1):15.Google Scholar
13. Setyawati, L. Relation between feeling fatigue, reaction time and work productivity. J Hum Ergol. (Tokyo) 1995;24(1):12935.Google Scholar
14. Chalder, T, Berelowitz, G, Pawlikowska, T, Watts, L, Wessely, S, Wright, D, et al. Development of a fatigue scale. J Psychosom Res. 1993;37:14753.Google Scholar
15. McIivenny, S, Ahmed, MH, Dunn, E, Swadi, H, Balshie, M. The translation into Arabic and revalidation of a fatigue questionnaire. East Med Health J. 1999;5:50314.Google Scholar
16. Jan, MMS, Shaabat, AO. Clobazam for the treatment of intractable childhood epilepsy. Saudi Med J. 2000;21(7):6224.Google Scholar
17. Altman, DG. Preparing to analyze data. In: Altman, DG, editor. Practical Statistics for Medical Research. London: Chapman & Hall; 1991. p. 12251.Google Scholar
18. Dean, AG, Dean, JA, Burton, A, Dicker, R. Epi info: a general-purpose microcomputer program for public health information systems. Am J Prev Med. 1991;7(3):17882.Google Scholar
19. Sullivan, PF, Kovalenko, P, York, TP, Prescott, CA, Kendler, KS. Fatigue in a community sample of twins. Psychol Med. 2003;33(2):197201.Google Scholar
20. Hein, S, Bonsignore, M, Barkow, K, Jessen, F, Ptok, U, Heun, R. Lifetime depressive and somatic symptoms as preclinical manifestations of late-onset depression. Eur Arch Psychiatry Clin Neurosci. 2003;253(1):1621.Google Scholar
21. David, A, Pelosi, A, McDonald, E, Stephens, D, Ledger, D, Rathbone, R, Mann, A. Tired, weak or in need of rest: fatigue among general practice attendees. Br Med J. 1990;301: 1199202.Google Scholar
22. Valdini, AF, Steinhardt, SI, Jaffe, AS. Demographic correlates of fatigue in a university family health centre. Fam Pract. 1987;4: 1037.Google Scholar
23. Chen, MK. The epidemiology of self-perceived fatigue among adults. Prev Med. 1986;15:7481.Google Scholar
24. Shore, CP, Austin, JK, Huster, GA, Dunn, DW. Identifying risk factors for maternal depression in families of adolescents with epilepsy. J Spec Pediatr Nurs. 2002;7(2):7180.Google Scholar
25. McQueen, A, Mander, R. Tiredness and fatigue in the postnatal period. J Adv Nurs. 2003;42(5):4639.Google Scholar
26. Sheeran, T, Marvin, RS, Pianta, RC. Mothers’ of resolution of their child’s diagnosis and self reported measures of parenting stress, marital relations, and social support. J Pediatr Psycol. 1997;22(2):197212.Google Scholar
27. Kobylinska-Olak, E. Prevention of inappropriate bringing up of epileptic children by their families. Neurol Neurochir Pol. 1976;10(2):2259.Google Scholar
28. Otero, S, Hodes, M. Maternal expressed emotion and treatment compliance of children with epilepsy. Dev Med Child Neurol. 2000;42(9):6048.Google Scholar
29. Butau, T, Piachaud, J. Knowledge and beliefs about epilepsy in mothers of children with epilepsy: a view from a developing country. Cent Afr J Med. 1993;39(9):1838.Google Scholar