Parents caregiving approaches: Facing a new treatment alternative in severe intractable childhood epilepsy

Seizure

Volumn 12, Issue 1, 2003, Pages 1-10

  Farnalls, Sarah L ^a   Rennick, Janet ^a  

^a MONTREAL CHILDREN S HOSPITAL   (Canada)

Author keywords

Caregiving; Chronic illness; Epilepsy

Indexed keywords

ADOLESCENT; ARTICLE; CAREGIVER; CASE STUDY; CHILD; CHILDHOOD DISEASE; CHRONIC DISEASE; CLINICAL ARTICLE; CONTROLLED STUDY; DATA ANALYSIS; DISEASE SEVERITY; EXPECTATION; EXPERIENCE; FAMILY LIFE; FEMALE; FOLLOW UP; HEALTH BEHAVIOR; HEALTH PRACTITIONER; HOME CARE; HOSPITAL CARE; HUMAN; INTERVIEW; INTRACTABLE EPILEPSY; MALE; MEDICAL LITERATURE; OUTPATIENT DEPARTMENT; PARENTAL BEHAVIOR; PRACTICE GUIDELINE; PRIORITY JOURNAL; SEIZURE; VAGUS NERVE STIMULATION;

EID: 0037234774     PISSN: 10591311     EISSN: None     Source Type: Journal    
DOI: 10.1016/S1059131102001693     Document Type: Article

References (40)

1. Newacheck, P. and Taylor, W. Childhood chronic illness: prevalence, severity and impact. American Journal of Public Health 1992; 82: 364-371.
2. Amar, A. P., Heck, C. N., Levy, M. L. et al. An institutional experience with cervical vagus nerve trunk stimulation for medically refractory epilepsy: rationale, technique, and outcome. Neurosurgery 1998; 43: 1265-1280.
3. Austin, J. K. and Dunn, D. W. Children with epilepsy: quality of life and psychosocial needs. Annual Review of Nursing Research 2000; 18: 26-47.
4. Begley, C. E., Famulari, M., Annegers, J. F. et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000; 41: 342-351.
5. Hickey, J. V. Seizures and epilepsy. In: The Clinical Practice of Neurological and Neurosurgical Nursing (Ed. J. V. Hickey), 4th Edition. Philadelphia, Lippincott, 1997: pp. 613-634.
6. Keranen, T. and Riekkinen, P. Severe epilepsy: diagnostic and epidemiological aspects. Acta Neurologia Scandinavica 1988; 117: 7-14.
7. Wiebec, S., Belhouse, D. R., Fallahay, C. and Eliasziw, M. Burden of epilepsy: The Ontario Health Survey. Canadian Journal of Neurological Sciences 1999; 26: 263-270.
8. O'Donoghue, M. F., Duncan, J. S. and Sander, J. W. A. S. The National Hospital Seizure Seveity Scale: a further development of the Chalfont Seizure Severity Scale. Epilepsia 1996; 37: 563-571.
9. Chokroverty, S. Anticonvulsant toxicity. In: Management of Epilepsy (Ed. S. Chokroverty). Boston, Butterworth-Heinemann, 1996: pp. 263-278.
10. Fenichel, G. M. Clinical Pediatric Neurology: A Signs and Symptoms Approach, 3rd Edition. Philadelphia, W.B. Saunders Company, 1997.
11. Holmes, G. L. Diagnosis and Management of Seizures in Children. Philadelphia, W.B. Saunders Company, 1987.
12. Austin, J. K., Smith, M. S., Risinger, M. W. and McNelis, A. M. Childhood epilepsy and asthma: comparison of quality of life. Epilepsia 1994; 35: 608-615.
13. Labar, D. Vagus nerve stimulation for intractable epilepsy in children. Developmental Medicine and Child Neurology 2000; 42: 496-499.
14. Hornig, G., Murphy, J., Schallert, G. and Tilton, C. Left VNS in children with refractory epilepsy: an update. Southern Medical Journal 1997; 90: 484-488.
15. Lundgren, J., Amark, P., Blennow, G., Stromblad, L. G. and Wallstedt, L. Vagus nerve stimulation in 16 children with refractory epilepsy. Epilepsia 1998; 39: 809-813.
16. Parker, A., Polkey, C., Binnie, C., Madigan, C., Ferrie, C. and Robinson, R. VNS in epileptic encephalopathies. Pediatrics 1999; 103: 778-782.
17. Ellis, N., Upton, D. and Thompson, P. Epilepsy and the family: a review of the current literature. Seizure 2000; 9: 22-30, doi: 10.1053/seiz.1999.0353.
18. Hoare, P. and Kerley, S. Psychosocial adjustment of children with chronic epilepsy and their families. Developmental Medicine and Child Neurology 1991; 33: 201-215.
19. Hodgman, C. H., McAnarney, E. R., Myers, G. J. et al. Emotional complications of adolescent grand mal epilepsy. The Journal of Pediatrics 1979; 952: 309-312.
20. Kitamoto, I., Kurokawa, T., Tomita, S., Maeda, Y., Sakamoto, K. and Ueda, K. Child-parent relationships in the care of epileptic children. Brain and Development 1988; 10: 36-40.
21. Thomas, S. V. and Bindu, V. B. Psychosocial and economic problems of parents of children with epilepsy. Seizure 1999; 8: 66-69.
22. Thompson, P. J. and Upton, D. The impact of chronic epilepsy on the family. Seizure 1992; 1: 43-48.
23. Hoare, P. The quality of life of children with chronic epilepsy and their families. Seizure 1993; 2: 269-275.
24. Mims, J. Self-esteem, behavior, and concerns surrounding epilepsy in siblings of children with epilepsy. Journal of Child Neurology 1997; 12: 187-192.
25. Austin, J. K. and McDermott, N. Parental attitude and coping behaviors of children with epilepsy. Journal of Neuroscience Nursing 1988; 20: 174-179.
26. Murray, J. Coping with the uncertainty of uncontrolled epilepsy. Seizure 1993; 2: 167-178.
27. Ward, F. and Bower, B. D. A study of certain social aspects of epilepsy in childhood. Developmental Medicine and Child Neurology 1978; 201 (Suppl. 39): 1-39.
28. Miller, W. L. and Crabtree, B. F. Clinical research. In: Strategies of Qualitative Inquiry (Eds N. K. Denzin and Y. S. Lincoln). Thousand Oaks, Sage, 1998: pp. 292-314.
29. Yin, R. K. Case Study Research: Design and Methods, 2nd Edition. Thousand Oaks, Sage, 1994.
30. Miles, M. B. and Huberman, A. M. Qualitative Data Analysis, 2nd Edition. Thousand Oaks, Sage, 1996.
31. Strauss, A. and Corbin, J. Basics of Qualitative Research. Thousand Oaks, Sage, 1998.
32. Cohen, M. H. The unknown and the unknowable: managing sustained uncertainty. Western Journal of Nursing Research 1993; 15: 77-96.
33. Mishel, M. H. Uncertainty in chronic illness. Annual Review of Nursing Research 1999; 17: 269-294.
34. Sharkey, T. The effects of uncertainty in families with children who are chronically ill. Home Heath Care Nurse 1995; 13: 37-42.
35. Gibson, C. H. The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing 1995; 21: 1201-1210.
36. Mishel, M. H. Reconceptualization of the uncertainty in illness theory. Image-The Journal of Nursing Scholarship 1990; 22: 256-262.
37. Ferrari, M., Matthews, W. S. and Barabas, G. The family and the child with epilepsy. Family Process 1983; 22: 53-59.
38. Hulme, P. A. Family empowerment: a nursing intervention with suggested outcomes for families of children with a chronic health condition. Journal of Family Nursing 1999; 5: 33-50.
39. Jerrett, M. D. Parents' experience of coming to know the care of a chronically ill child. Journal of Advanced Nursing 1994; 19: 1050-1056.
40. Wiener, C. L. and Dodd, M. J. Coping amid uncertainty: an illness trajectory perspective. Scholarly Inquiry for Nursing Practice: An International Journal 1993; 7: 17-31.