Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

Julie Ann Kristy L. Torres, Rowena Arca-Cabradilla, Michelle G. Sy, Ma. Lourdes P. Corrales-Joson, Maria Antonia Moral-Valencia, Rosalina Q. de Sagun

Oct 2019 DOI 10.35460/2546-1621.2018-0120     Access   

Abstract

Background: Caregiver burden and its impact on quality of life is as important as determining the quality of life of children with epilepsy as these factors influence each other as well as the outcome of these children.

Objectives: The primary objective of the study was to determine the association between caregiver burden and quality of life as well as anxiety and depressive symptoms among caregivers of Filipino children with epilepsy. Also, the study aimed to determine the prevalence rate of caregiver burden, impaired quality of life, anxiety and depressive symptoms in an ambulatory care setting.

Methodology: In this cross-sectional survey, adult caregivers accompanying their pediatric patients with epilepsy at a single tertiary center were recruited. Sociodemographic and clinical data were collected. The participants completed questionnaires for caregiver burden, quality of life and anxiety and depressive symptoms.

Results: Fifty-three caregivers participated with a mean age of 38 years. Most were females, married, unemployed and at least college level. The mean age of their patients was 9.4 years and 71.7% of patients were on single anti-epileptic drug. Lower educational level was less likely associated with caregiver burden. Although impaired quality of life and depressive symptoms were more likely associated with caregiver burden, this association did not reach statistical significance.

Conclusion: The prevalence rate of caregiver burden, impaired quality of life, anxiety and depressive symptoms were 24.5%, 22.6%, 28.3%, and 9.4% respectively among caregivers of Filipino children with epilepsy at a single tertiary center. Lower educational level was the only characteristic significantly associated with lesser odds of having caregiver burden.

  1. Beghi E. Addressing the burden of epilepsy: many unmet needs. Pharmacological Research. 2016 May 1;107:79–84.
  2. Annabell CH. Epilepsy surgery in the Philippines. Neurology Asia. 2007;12(2):43–5.
  3. Gutierrez-Angel AM, Martinez-Juarez IE, Hernandez-Vanegas LE, Crail-Melendez D. Quality of life and level of burden in primary caregivers of patients with epilepsy: Effect of neuropsychiatric comorbidity. Epilepsy & Behavior. 2018 Apr 1;81:12–7.
  4. Austin JK, Caplan R. Behavioral and psychiatric comorbidities in pediatric epilepsy: toward an integrative model. Epilepsia. 2007 Sep;48(9):1639–51.
  5. Phillips AC, Gallagher S, Hunt K, Der G, Carroll D. Symptoms of depression in non-routine caregivers: the role of caregiver strain and burden. British Journal of Clinical Psychology. 2009 Nov;48(4):335–46.
  6. Piran P, Khademi Z, Tayari N, Mansouri N. Caregiving burden of children with chronic diseases. Electron Physician. 2017 Sep 25;9(9):5380–7.
  7. Basaran A, Karadavut KI, Uneri SO, Balbaloglu O, Atasoy N. The effect of having a children with cerebral palsy on quality of life, burn-out, depression and anxiety scores: A comparative study. Eur J Phys Rehabil Med. 2013;49(6):815–22.
  8. Lai S-T, Tan W-Y, Wo MC-M, Lim K-S, Ahmad SB, Tan C-T. Burden in caregivers of adults with epilepsy in Asian families. Seizure. 2019 Jul;71:132–9.
  9. Helmers S, Gupta S, Huang S, Berk A, Knoth R. Caregiver Burden: An Under-Recognized Aspect of Epilepsy Care. 2015.
  10. Karakis I, Cole AJ, Montouris GD, San Luciano M, Meador KJ, Piperidou C. Caregiver Burden in Epilepsy: Determinants and Impact. Epilepsy Res Treat. 2014;2014:1–9.
  11. Tajudeen Nuhu F, Jika Yusuf A, Akinbiyi A, Oluyinka Fawole J, Joseph Babalola O, Titilope Sulaiman Z, et al. The burden experienced by family caregivers of patients with epilepsy attending the government psychiatric hospital, Kaduna, Nigeria. Pan Afr Med J. 2010 Jun 1;5:16.
  12. Westphal-Guitti AC, Alonso NB, Migliorini RCVP, da Silva TI, Azevedo AM, Caboclo LOSF, et al. Quality of life and burden in caregivers of patients with epilepsy. J Neurosci Nurs. 2007 Dec;39(6):354–60.
  13. Ferro MA, Speechley KN. Depressive symptoms among mothers of children with epilepsy: a review of prevalence, associated factors, and impact on children. Epilepsia. 2009 Nov;50(11):2344–54.
  14. Jones C, Reilly C. Parental anxiety in childhood epilepsy: A systematic review. Epilepsia. 2016;57(4):529–37.
  15. Shore CP, Austin JK, Dunn DW. Maternal adaptation to a child’s epilepsy. Epilepsy Behav. 2004 Aug;5(4):557–68.
  16. Mu P-F, Kuo H-C, Chang K-P. Boundary ambiguity, coping patterns and depression in mothers caring for children with epilepsy in Taiwan. Int J Nurs Stud. 2005 Mar;42(3):273–82.
  17. Cianchetti C, Messina P, Pupillo E, Crichiutti G, Baglietto MG, Veggiotti P, et al. The perceived burden of epilepsy: Impact on the quality of life of children and adolescents and their families. Seizure. 2015 Jan;24:93–101.
  18. Bull MJ. Factors influencing family caregiver burden and health. West J Nurs Res. 1990 Dec;12(6):756–8.
  19. Ohaeri JU, Awadalla AW, Farah AA. Quality of life in people with epilepsy and their family caregivers. An Arab experience using the short version of the World Health Organization quality of life instrument. Saudi Med J. 2009 Oct;30(10):1328–35.
  20. Saburi G. Stressors of caregivers of school-age children with epilepsy and use of community resources. J Neurosci Nurs. 2011 Jun;43(3):E1–12.
  21. van Andel J, Zijlmans M, Fischer K, Leijten FSS. Quality of life of caregivers of patients with intractable epilepsy. Vol. 50, Epilepsia. United States; 2009. p. 1294–6.
  22. Lee MMK, Lee TMC, Ng PKK, Hung ATF, Au AML, Wong VCN. Psychosocial Well-Being of Carers of People with Epilepsy in Hong Kong. Epilepsy Behav. 2002 Apr;3(2):147–57.
  23. Chou KR. Caregiver burden: a concept analysis. J Pediatr Nurs. 2000 Dec;15(6):398–407.
  24. Spindler UP, Hotopp LC, Bach VA, Hornemann F, Syrbe S, Andreas A, et al. Seizure disorders and developmental disorders: impact on life of affected families—a structured interview. Eur J Pediatr. 2017;176(8):1121–9.
  25. McCann D, Bull R, Winzenberg T. The daily patterns of time use for parents of children with complex needs: a systematic review. J Child Health Care. 2012 Mar;16(1):26–52.
  26. Bautista M, Yu-Maglonzo E, Pilares-Cruz M. Modified Caregiver Strain Index. The Filipino Family Physician. 2007;45:1–7.
  27. Robinson BC. Validation of a Caregiver Strain Index. J Gerontol. 1983 May;38(3):344–8.
  28. Topp CW, Ostergaard SD, Sondergaard S, Bech P. The WHO-5 Well-Being Index: a systematic review of the literature. Psychother Psychosom. 2015;84(3):167–76.
  29. Hall T, Krahn GL, Horner-Johnson W, Lamb G. Examining functional content in widely used Health-Related Quality of Life scales. Rehabil Psychol. 2011 May;56(2):94–9.
  30. De Guzman MLRE. A validation of the Hospital Anxiety and Depression Scale (HADS) in the medically-ill. Acta Med Philipp. 2013;47(3):53–62.
  31. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983 Jun;67(6):361–70.
  32. Bjellan I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale: an updated literature review. J Psychosom Res. 2002;52:69–77.
  33. Terra VC, Cysneiros RM, Schwartzman JS, Teixeira MCT V, Arida RM, Cavalheiro EA, et al. Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective. Disabil Rehabil. 2011 Jan 1;33(5):384–8.

Articles related to the one you are viewing

There are currently no results to show, please try again later

CC BY: Open Access Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/