Coping with Epilepsy: How Do They Influence Health-Related Quality of Life (HRQoL)?
DOI:
https://doi.org/10.61841/1jr6x812Keywords:
coping, health-related quality of life (HRQoL),, epilepsyAbstract
Health-related quality of life (HRQoL) status of people with epilepsy (PWE) could likely be influenced by their coping mechanisms. Our study aimed to 1) determine the association between HRQoL profiles and coping categories, 2) correlate HRQoL domains and coping mechanisms and 3) compare coping strategies of PWE with different HRQoL levels. A cross- sectional sample of epilepsy out-patients was recruited from the Neurology Clinic, Hospital Sultanah Nur Zahirah, Kuala Terengganu. SPSS 16 was employed for data analysis. Upon written consent, included patients completed the Malay Qual- ity of Life In Epilepsy (MQOLIE-30) and the Malay Briefaaaaaa COPE instruments. Sixty out of 72 patients (response rate
= 83.3%) consented participation (median age = 27.5 years; range 18-65 years; male = 53.3%; unmarried = 63.3%; Malay
= 90.0%; SPM /Cambridge O’ level equivalent education or lower = 81.4%; unemployed = 35.0%; rural residents = 70.0%). Problem-focused coping mechanisms were generally preferred by PWEs compared to emotion-focused strategies (p<0.05). Behavioural Disengagement and Self-Blame were significantly associated with almost all HRQoL domains meanwhile Energy/Fatigue and Overall Quality of Life were significantly linked to the most coping strategies. Patients with good HRQoL significantly preferred to cope via Positive Reframing, Planning and Religion compared to their counterparts (p<0.05). On the other hand, patients with poor HRQoL significantly favoured Substance Use, Denial, Behavioural Disen- gagement, Venting and Self-Blame to deal with epilepsy (p<0.05). Healthcare providers could incorporate advice on ef- fective coping styles for PWE in an attempt to balance the treatment outcomes in terms of both physiological and psychosocial benefits.
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References
1. Baker, G.A., Smith, D.F., Dewey, M., Jacoby. A., & Chadwick, D.W. (1993). The development of a health-related quality of life measure for patients with intractable epilepsy. Epilepsy Research,16, 65-81.
2. Baker, G.A. (2001). Assessment of quality of life in people with epilepsy: some practical implications. Epilepsia, 42, 66-69.
3. Betts, T.A. (1993). Neuropsychiatry. In J. Laidlaw, A. Richens, & D. Chadwick, (Ed.), A Textbook of Epilepsy. Churchill Livingstone.
4. Birbeck, G.L., Hays, R.D., Cui, X., & Vickrey, B.G. (2002). Seizure reduction and quality of life improvements in people with epilepsy. Epilepsia, 43, 535-538.
5. Carver, C. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioural Medicine, 4, 92-100.
6. Carver, C.S., Scheier, M.F., & Weintraub, J.K. (1989). Assessing coping strategies: a theorically based approach. Journal of Personality & Social Psychology, 56, 267-283.
7. Chronister, J., & Chan, F. (2007). Hierarchical Coping: A Conceptual Framework for Understanding Coping Within the Context of Chronic Illness and Disability. In E. Martz, & H. Livneh, (Ed.), Coping with chronic illness and disability: Theoretical, empirical, and clinical aspects (pp. 49-71). Springer Science.
8. Collings, J.A. (1990). Psychosocial well-being and epilepsy: an empirical study. Epilepsia, 31, 418-426.
9. Devins, G.M., & Binik, Y.M. (1996). Facilitating coping with chronic physical illness. In M. Zeidner, & N.S. Endler, (Ed.), Handbook of Coping: Theory, Research, Applications (pp. 640-696). Toronto: John Wiley & Sons, Inc.
10. Dobson, A.J. (1984). Calculating sample size. Trans. Menzies Foundation, 7, 75-79.
11. Ebadi, A., Ahmadi, F., Ghanei, M., & Kazemnejad, A. (2009). Spirituality: a key factor in coping among Iranians chronically affected by mustard gas in the disaster of war. Journal of Nursing & Health Sciences, 11, 344-350.
12. Elwes, R.D.C., Marshall, D., Beattie, A., & Newman, P.K. (1991). Epilepsy and unemployment: A community based survey in an area of high unemployment. Journal of Neurology, Neurosurgery & Psychiatry, 54, 200-203.
13. Felce, D., & Perry, J. (1995). The extent of support for ordinary living provided in staffed housing: the relationship between staffing levels, resident characteristics, staff: resident interactions and resident activity patterns. Social Science & Medicine, 40, 799-810.
14. Folkman, S., & Moskowitz, J.T. (2004). Coping: Pitfalls and promise. Annual Review of Psychology, 55, 745-774.
15. Folkman, S., & Moskowitz, J.T. (2000). Positive effect and the other side of coping. American Psychology, 647-654.
16. Gehlert, S. (1994). Perceptions of control in adults with epilepsy. Epilepsia, 35, 81–88.
17. Gilham, R., Bryant-Comstock, L.K., & Kane, K. (2000). Validation of the side effect and life satisfaction (SEALS) in- ventory. Seizure, 9, 4584-63.
18. Gilliam, F.G., Fessler, A.J., Baker, G., et al. (2004). Systematic screening allows reduction of adverse antiepileptic drug effects: a randomized trial. Neurology, 62, 23-7.
19. Hassankhani, H., Taleghani, F., Mills, J., Birks, M., Francis, K., & Ahmadi, F. (2009). Being hopeful and continuing to move ahead: religious coping in Iranian chemical warfare poisoned veterans, a qualitative study. Journal of Religion & Health, 49, 311-21.
20. Herman-Stahl, M.A., Stemmier, M., & Petersen, A.C. (1995). Approach and avoidant coping: implications for adoles- cent mental health. Journal of Youth & Adolescence, 24, 649.
21. Hosseini, N., Sharif, F., Ahmadi, F., & Zare, M. (2010). Striving for balance: coping with epilepsy in Iranian patients. Epilepsy Behaviour, 18, 466-471.
22. Ismail, H., Wright, J., Rhodes, P., Small, N., & Jacoby, A. (2005). South Asians and epilepsy: exploring health experi- ences, needs and beliefs of communities in the North of England. Seizure, 14, 497-503.
23. Jacoby, A., Snape, D., & Baker, G.A. (2005). Epilepsy and social identity: the stigma of a chronic neurological dis- order. Lancet Neurology, 4, 171-178.
24. Jacoby, A. (1994). Felt versus enacted stigma: a concept revisited. Social Science & Medicine, 38, 269-274.
25. Johnson, E.K., Jones, J.E., Seidenberg, M., & Hermann, B.P. (2004). The relative impact of anxiety, depression and clinical seizure features on health-related quality of life in epilepsy. Epilepsia, 45, 544-50.
26. Kemp, S., Morley, S., & Anderson, E. (1999). Coping with epilepsy: do illness representations play a role?. British Journal of Clinical Psychology, 38, 43-58.
27. Koot, H.M., & Wallander, J.L. (2001). Challenges in child and adolescent quality of life research. In H.M. Koot, &
J.L. Wallander J L, (Ed.). Quality of life in child and adolescent illness concepts, methods, and findings (pp. 403-424). East Sussex, England: Brunner-Routledge.
28. Lazarus, R. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medicine, 55, 234-247.
29. Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer-Verlag.
30. Lemeshow, S., Hosmer, D.W., Klar, J., & Lwanga, S.K. (1990). Adequacy of sample size in health studies. World Health Organization, 1-4.
31. Leone, M.A., Beghib, E., Righini, C., Apolone, G., & Mosconi, P. (2005). Epilepsy and quality of life in adults: A re- view of instruments. Epilepsy Research, 66, 23-44.
32. Livneh, H., Wilson, L.M., Duchesneau, A., & Antorak, R.F. (2001). Psychosocial adaptation to epilepsy: the role of
coping strategies. Epilepsy Behaviour, 2, 533-544.
33. Lowe, A.J., David, E., Kilpatrick, C.J., Matkovic, Z., Cook, M.J., Kaye, A., et al. (2004). Epilepsy surgery for patholo- gically proven hippocampal sclerosis provides longterm seizure control and improved quality of life. Epilepsia, 45, 237– 242.
34. Lua, P.L., Cosmas, G., & Md.Nawi, N.H. (2007). The burden of epilepsy: quality of life and coping strategies. Univer- sity Publication Centre (UPENA), Universiti Teknologi MARA, Shah Alam. Selangor: Malaysia.
35. Lua, P.L., & Neni, W.S. (2011). Awareness, knowledge andattitudes with respect to epilepsy: an investigation in rela- tion to health-related quality of life within a Malaysian setting. Epilepsy Behaviour, 21, 248-254.
36. Lwanga, S.K., & Lemeshow, S. (1991). Sample size determination in health studies: a practical manual. World Health Organization, 1-3.
37. Maes, S., Leventhal, H., & de Ridder, D.T. (1996). Coping with chronic diseases. In M. Zeidner, & N.S. Endler, (Ed.). Handbook of coping: theory, research, applications (pp. 221-251). New York: Wiley.
38. McLachlan, R.S., Sadler, M., Pillay, N., Guberman, A., Jones, M., Wiebe, S., & Schneiderman, J. (2003). Quality of life after vagus nerve stimulation for intractable epilepsy: is seizure control the only contributing factor? European Journal of Neurology, 50(1), 16-19.
39. Mittan, R.J. (1986). Fear of seizures. In S. Whitman, B.P. Hermann, (Ed.). Psychopathology in Epilepsy: Social Di- mensions. Oxford: Oxford University Press.
40. Morse, J.M., & Johnson, J.L. (1991). Towards a theory of illness: the illness constellation model. In J.M. Morse, J.L. Johnson, (Ed.). The illness experience (pp. 315-342). London, England: Sage Press.
41. Moskowitz, J.T., Folkman, S., Collette, L., & Vittinghoff, E. (1996). Coping and mood during AIDS-related caregiv- ing and bereavement. Annals of Behavioural Medicine, 18, 49-57.
42. Naing, N.N. (2009). A practical guide on determination of sample size in health sciences research: Sample size de- termination in descriptive studies. Kelantan, Malaysia: Pustaka Aman Press Sdn. Bhd.
43. Neni, W.S., Latif, A.Z.A., Wong, S.Y., Lua, P.L. (2010). Awareness, knowledge and attitudes towards epilepsy among rural populations in East Coast Peninsular Malaysia: a preliminary exploration. Seizure,19, 280-290.
44. Piazzini, A., Ramaglia, G., Turner, K., Chifari, R., El Kiky, E., Canger, R., Canevini, M.P. (2007). Coping strategies in epilepsy: 50 drug-resistant and 50 seizure-free patients. Seizure, 16, 211-217.
45. Raty, L.K.A., Soderfeldt, B.A., Wilde Larsson, B.M. (2007). Daily life in epilepsy: patients’ experiences described by emotions. Epilepsy Behaviour, 10, 389-396.
46. Rosenbaum, M., & Palmon, N. (1984). Helplessness and resourcefulness in coping with epilepsy. Journal of Con- sultancy & Clinical Psychology, 52, 244-53.
47. Sackellares, C.J., Kwong, J.W., Vuong, A., Hammer, A.E., Barrett, P.S. (2002). Lamotrigine monotherapy improves health-related quality of life in epilepsy: a double-blind comparison with valproate. Epilepsy Behaviour, 3, 376-382.
48. Saniah, A.R., & Zainal, N.Z. (2010). Anxiety, depression and coping strategies in breast cancer patients on chemother- apy. Malaysian Journal of Psychiatry, 19, 2.
49. Snyder, M. (1990). Stressor, coping mechanisms and perceived health in persons with epilepsy. International Disabil- ity Studies, 12, 100-103.
50. Spector, S., Tranah, A., Cull, C., & Goldstein, L.H. (1999). Reduction in seizure frequency following a short-term group intervention for adults with epilepsy. Seizure, 8, 297-303.
51. Spencer, S.S., Berg, A.T., Vickrey, B.G., et al. (2003). Initial outcomes in the multicenter study of epilepsy surgery. Neurology, 61:1680–1685.
52. Statistics by country for epilepsy in 2004. http://www.cureresearch.com/e/epilepsy/stats-country.htm. Accessed 5 Sept 2010.
53. Taleghani, F., Yekta, Z.P., & Nasrabadi, A.N. (2006). Coping with breast cancer in newly diagnosed Iranian women. Journal of Advanced Nursing, 54, 265-272.
54. Trimble, M.R., & Dodson, W.E. (1994). Epilepsy and quality of life. New York: Raven Press.
55. Vickrey, B.G., Berg, A.T., Sperling, M.R., Shinnar, S., Langfitt, J.T., Bazil, C.W. et al. (2000). Relationship between seizure severity and health-related quality of life in refractory localization-related epilepsy. Epilepsia, 41, 760-764.
56. Vickrey, B.G., Hays, R.D., Graber, J., et al. (1993). A health-related quality of life instrument for patients evaluated for epilepsy surgery. Medical Care, 30, 299-319.
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