Child Health Nursing Research

Korean Academy of Child Health Nursing (한국아동간호학회)
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Health-related quality of life in children with epilepsy: a concept analysis

  • Choi, Sinyoung (Center for Human-Caring Nurse Leaders for the Future by Brain Korea 21 (BK 21) Four Project, College of Nursing, Seoul National University) ;
  • Bang, Kyung-Sook (College of Nursing.The Research Institute of Nursing Science, Seoul National University)
  • Received : 2022.12.11
  • Accepted : 2023.01.05
  • Published : 2023.01.31
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Abstract

Purpose: This study aimed to conduct a concept analysis of health-related quality of life in children with epilepsy to promote conceptual clarification and facilitate mutual understanding of the concept. Methods: Walker and Avant's concept analysis method was adopted. Results: Health-related quality of life in children with epilepsy consists of six attributes: health status, inner strength, close relationships, resource-rich community, social acceptance, and changeability. According to the ecological system paradigm, these attributes are structured into five dimensions: organism, microsystem, macrosystem, exosystem, and chronosystem. These dimensions provide a comprehensive approach to the relationship between children with epilepsy and their environment. Epilepsy and interactions with multilevel ecological systems that are directly and indirectly related to children with epilepsy precede the concept, followed by positive and negative affective responses. Conclusion: The findings of this study may support effective communication in various practice settings, thereby contributing to the health and well-being of children with epilepsy, as well as the development and expansion of interventions to improve their health-related quality of life.

Keywords

Acknowledgement

This research was supported by the BK21 Four project (Center for Human-Caring Nurse Leaders for the Future) funded by the Ministry of Education (MOE, Korea) and National Research Foundation of Korea (NRF).

References

  1. GBD 2016 Epilepsy Collaborators. Global, regional, and national burden of epilepsy, 1990-2016: a systematic analysis for the global burden of disease study 2016. The Lancet Neurology. 2019;18(4):357-375. https://doi.org/10.1016/s1474-4422(18)30454-x
  2. Aaberg KM, Gunnes N, Bakken IJ, Lund Soraas C, Berntsen A, Magnus P, et al. Incidence and prevalence of childhood epilepsy: a nationwide cohort study. Pediatrics. 2017;139(5):e20163908. https://doi.org/10.1542/peds.2016-3908
  3. Stevanovic D, Tadic I, Novakovic T. Health-related quality of life in children and adolescents with epilepsy: a systematic review. In: Gadze ZP, Editor. Epilepsy in children: clinical and social aspects. London: IntechOpen; 2011.
  4. Park YS, Jeong EN, Yang JH. Lived experiences of life world for adolescents with epilepsy. Journal of Korean Academy of Fundamentals of Nursing. 2011;18(1):6-18.
  5. Ronen GM, Streiner DL, Rosenbaum P. Health-related quality of life in childhood epilepsy: moving beyond 'seizure control with minimal adverse effects'. Health and Quality of Life Outcomes. 2003;1:36. https://doi.org/10.1186/1477-7525-1-36
  6. Lee SY, Choi SC, Nah YH. Review: review on health-related quality of life (HRQL). Korean Journal of Neurogastroenterology and Motility. 2001;7(1):6-17.
  7. The Office of Disease Prevention and Health Promotion. Health-related quality of life and well-being [Internet]. Washington, D.C.: U.S. Department of Health and Human Services; 2010 [cited 2022 April 12]. Available from: https://www.healthypeople.gov/2020/about/foundation-health-measures/Health-Related-Quality-of-Life-and-Well-Being
  8. Ko S. Calculation of healthy life expectancy in South Korea. Health Welfare Issue & Focus. 2014;(247):1-8.
  9. Drotar D. Measuring health-related quality of life in children and adolescents: implications for research and practice. Mahwah (NJ): Lawrence Erlbaum Associates; 1998.
  10. Yu SY. Measurement and variation of HRQoL: comparison among methods and utility score changes by health status [dissertation]. Seoul: Seoul National University; 2016.
  11. Walker LO, Avant KC. Strategies for theory construction in nursing. 4th ed. Upper Saddle River (NJ): Pearson/Prentice Hall; 2005.
  12. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Annals of Internal Medicine. 2018;169(7):467-473. https://doi.org/10.7326/M18-0850
  13. Standard Korean Dictionary. Health [Internet]. Seoul: National Institute of Korean Language; [cited 2022 September 5]. Available from: https://stdict.korean.go.kr/search/searchView.do
  14. The Britannica Dictionary. Health [Internet]. Chicago (IL): Encyclopaedia Britannica; [cited 2022 July 3]. Available from: https://www.britannica.com/dictionary/health
  15. Taber's Medical Dictionary. Health [Internet]. Charlottesville (VA): Unbound Medicine; [cited 2022 October 17]. Available from: https://www.tabers.com/tabersonline/view/Tabers-Dictionary/744734/all/health
  16. Urimalsaem. Quality of life [Internet]. Seoul: National Institute of Korean Language; [cited 2022 September 5]. Available from: https://opendict.korean.go.kr/dictionary/view?sense_no=821392&viewType=confirm
  17. Cambridge Dictionary. Quality of life [Internet]. Cambridge: Cambridge University Press; [cited 2022 May 13]. Available from: https://dictionary.cambridge.org/dictionary/english/quality-of-life
  18. World Health Organization (WHO). Health status [Internet]. Houston (TX): International Association for Hospice & Palliative Care; 2009 [cited 2022 October 3]. Available from: https://pallipedia.org/health-status
  19. Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics. 2016;34(7):645-649. https://doi.org/10.1007/s40273-016-0389-9
  20. Hand C. Measuring health-related quality of life in adults with chronic conditions in primary care settings: critical review of concepts and 3 tools. Canadian Family Physician. 2016;62(7):e375-e383.
  21. Ferrans CE, Zerwic JJ, Wilbur JE, Larson JL. Conceptual model of health-related quality of life. Journal of Nursing Scholarship. 2005;37(4):336-342. https://doi.org/10.1111/j.1547-5069.2005.00058.x
  22. Calvert MJ, Freemantle N. Use of health-related quality of life in prescribing research. Part 1: why evaluate health-related quality of life? Journal of Clinical Pharmacy and Therapeutics. 2003;28(6):513-521. https://doi.org/10.1046/j.0269-4727.2003.00521.x
  23. Snyder Valier AR, Bacon CEW, Lam KC. Disablement model and health-related quality of life classification for patient-reported outcomes measurement information system (PROMIS) instruments. Journal of Athletic Training. 2018;53(12):1206-1213. https://doi.org/10.4085/1062-6050-331-17
  24. Park MS. Quality of life of epilepsy (cerebral electrical disorder) disabled person. Journal of Disability and Welfare. 2014;24:83-108. https://doi.org/10.22779/kadw.2014..24.83
  25. Loiselle KA, Ramsey RR, Rausch JR, Modi AC. Trajectories of health-related quality of life among children with newly diagnosed epilepsy. Journal of Pediatric Psychology. 2016;41(9):1011-1021. https://doi.org/10.1093/jpepsy/jsw019
  26. Maia Filho Hde S, Gomes Mda M, Fontenelle LM. Development and validation of a health related quality of life questionnaire for Brazilian children with epilepsy: preliminary findings. Arquivos de Neuro-Psiquiatria. 2005;63(2B):389-394. https://doi.org/10.1590/s0004-282x2005000300004
  27. Lach LM, Ronen GM, Rosenbaum PL, Cunningham C, Boyle MH, Bowman S, et al. Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part I: the role of epilepsy and co-morbidity. Quality of Life Research. 2006; 15(7):1161-1171. https://doi.org/10.1007/s11136-006-0051-7
  28. Chon MY, Kang SY, Kim MY. Influencing factors of health-related quality of life in an local residents': based on ecological model. Journal of The Korean Society of Living Environmental System. 2021;28(1):39-48. https://doi.org/10.21086/ksles.2021.2.28.1.39
  29. Park J, Baek S. Ecological predictors of health-related quality of life (HRQoL) among children from low-income families in South Korea. Children and Youth Services Review. 2017;81:238-245. https://doi.org/10.1016/j.childyouth.2017.07.027
  30. Boling W, Means M, Fletcher A. Quality of life and stigma in epilepsy, perspectives from selected regions of Asia and Sub-Saharan Africa. Brain Sciences. 2018;8(4):59. https://doi.org/10.3390/brainsci8040059
  31. Pal DK, Chaudhury G, Das T, Sengupta S. Predictors of parental adjustment to children's epilepsy in rural India. Child: Care, Health and Development. 2002;28(4):295-300. https://doi.org/10.1046/j.1365-2214.2002.00278.x
  32. Chew J, Carpenter J, Haase AM. Living with epilepsy in adolescence-a qualitative study of young people's experiences in Singapore: peer socialization, autonomy, and self-esteem. Child: Care, Health and Development. 2019;45(2):241-250. https://doi.org/10.1111/cch.12648
  33. Crudgington H, Collingwood A, Bray L, Lyle S, Martin R, Gringras P, et al. Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy & Behavior. 2020;112:107372. https://doi.org/10.1016/j.yebeh.2020.107372
  34. Elliott IM, Lach L, Smith ML. I just want to be normal: a qualitative study exploring how children and adolescents view the impact of intractable epilepsy on their quality of life. Epilepsy & Behavior. 2005;7(4):664-678. https://doi.org/10.1016/j.yebeh.2005.07.004
  35. Kerr C, Nixon A, Angalakuditi M. The impact of epilepsy on children and adult patients' lives: development of a conceptual model from qualitative literature. Seizure. 2011;20(10):764-774. https://doi.org/10.1016/j.seizure.2011.07.007
  36. McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure. 2004;13(1):15-31. https://doi.org/10.1016/s1059-1311(03)00080-3
  37. Ronen GM, Rosenbaum P, Law M, Streiner DL. Health-related quality of life in childhood disorders: a modified focus group technique to involve children. Quality of Life Research. 2001;10(1):71-79. https://doi.org/10.1023/a:1016659917227
  38. Thomson L, Fayed N, Sedarous F, Ronen GM. Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review. Developmental Medicine and Child Neurology. 2014;56(5):421-433. https://doi.org/10.1111/dmcn.12335
  39. Aronu AE, Uwaezuoke N, Chinawa JM, Bisi-Onyemaechi A, Ojinnaka NC. Health-related quality of life in children and adolescents with epilepsy in Enugu: need for targeted intervention. Nigerian Journal of Clinical Practice. 2021;24(4):517-524.
  40. Bronfenbrenner U. Ecological systems theory. In: Vasta R, Editor. Six theories of child development: revised formulations and current issues. London: Jessica Kingsley; 1992. p. 187-249.
  41. Hightower S, Carmon M, Minick P. A qualitative descriptive study of the lived experiences of school-aged children with epilepsy. Journal of Pediatric Health Care. 2002;16(3):131-137. https://doi.org/10.1067/mph.2002.119599
  42. Lee A, Hamiwka LD, Sherman EM, Wirrell EC. Self-concept in adolescents with epilepsy: biological and social correlates. Pediatric Neurology. 2008;38(5):335-339. https://doi.org/10.1016/j.pediatrneurol.2008.01.011
  43. Abdel Ghaffar NF, Asiri RN, Al-Eitan LN, Alamri RS, Alshyarba RM, Alrefeidi FA, et al. Improving public stigma, sociocultural beliefs, and social identity for people with epilepsy in the Aseer region of Saudi Arabia. Epilepsy & Behavior Reports. 2021;16:100442. https://doi.org/10.1016/j.ebr.2021.100442
  44. Bishop M, Boag EM. Teachers' knowledge about epilepsy and attitudes toward students with epilepsy: results of a national survey. Epilepsy & Behavior. 2006;8(2):397-405. https://doi.org/10.1016/j.yebeh.2005.11.008
  45. Ferro MA, Camfield CS, Levin SD, Smith ML, Wiebe S, Zou G, et al. Trajectories of health-related quality of life in children with epilepsy: a cohort study. Epilepsia. 2013;54(11):1889-1897. https://doi.org/10.1111/epi.12388
  46. Jantzen S, Muller-Godeffroy E, Hallfahrt-Krisl T, Aksu F, Pust B, Kohl B, et al. FLIP&FLAP-a training programme for children and adolescents with epilepsy, and their parents. Seizure. 2009;18(7):478-486. https://doi.org/10.1016/j.seizure.2009.04.007
  47. Koh HK, Kobau R, Whittemore VH, Mann MY, Johnson JG, Hutter JD, et al. Toward an integrated public health approach for epilepsy in the 21st century. Preventing Chronic Disease. 2014;11:E146. https://doi.org/10.5888/pcd11.140270
  48. Savarese G, Carpinelli L, D'Elia D, Coppola G. Teachers of various school grades and representations of epilepsy: problems, relational aspects and perspectives of life quality. Italian Journal of Pediatrics. 2015;41:70. https://doi.org/10.1186/s13052-015-0177-8
  49. Wu YP, Follansbee-Junger K, Rausch J, Modi A. Parent and family stress factors predict health-related quality in pediatric patients with new-onset epilepsy. Epilepsia. 2014;55(6):866-877. https://doi.org/10.1111/epi.12586
  50. Ronen GM, Streiner DL, Rosenbaum P; Canadian Pediatric Epilepsy Network. Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures. Epilepsia. 2003;44(4):598-612. https://doi.org/10.1046/j.1528-1157.2003.46302.x
  51. Jacoby A. Stigma, epilepsy, and quality of life. Epilepsy & Behavior. 2002;3(6 Suppl 2):10-20. https://doi.org/10.1016/s1525-5050(02)00545-0
  52. Mlinar S, Petek D, Cotic Z, Mencin Ceplak M, Zaletel M. Persons with epilepsy: between social inclusion and marginalisation. Behavioural Neurology. 2016;2016:2018509. https://doi.org/10.1155/2016/2018509
  53. Gosain K, Samanta T. Understanding the role of stigma and misconceptions in the experience of epilepsy in India: findings from a mixed-methods study. Frontiers in Sociology. 2022;7:790145. https://doi.org/10.3389/fsoc.2022.790145
  54. Asnakew S, Legas G, Belete A, Tadele Admasu F, Demilie K, Alebachew Bayih W, et al. Knowledge and attitude of the community towards epilepsy in Northwest Ethiopia: a huge gap on knowledge and attitude of the community. Epilepsy & Behavior Reports. 2020;15:100422. https://doi.org/10.1016/j.ebr.2020.100422
  55. Austin JK, MacLeod J, Dunn DW, Shen J, Perkins SM. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy & Behavior. 2004;5(4):472-482. https://doi.org/10.1016/j.yebeh.2004.04.008
  56. Funderburk JA, McCormick BP, Austin JK. Does attitude toward epilepsy mediate the relationship between perceived stigma and mental health outcomes in children with epilepsy? Epilepsy & Behavior. 2007;11(1):71-76. https://doi.org/10.1016/j.yebeh.2007.04.006
  57. De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics. 2005;23(7):659-685. https://doi.org/10.2165/00019053-200523070-00003
  58. Jain P, Smith ML, Speechley K, Ferro M, Connolly M, Ramachandrannair R, et al. Seizure freedom improves health-related quality of life after epilepsy surgery in children. Developmental Medicine & Child Neurology. 2020;62(5):600-608. https://doi.org/10.1111/dmcn.14390
  59. Schraegle WA, Titus JB. The relationship of seizure focus with depression, anxiety, and health-related quality of life in children and adolescents with epilepsy. Epilepsy & Behavior. 2017;68:115-122. https://doi.org/10.1016/j.yebeh.2016.12.009
  60. Taylor RM, Gibson F, Franck LS. A concept analysis of health-related quality of life in young people with chronic illness. Journal of Clinical Nursing. 2008;17(14):1823-1833. https://doi.org/10.1111/j.1365-2702.2008.02379.x
  61. van Empelen R, Jennekens-Schinkel A, van Rijen PC, Helders PJ, van Nieuwenhuizen O. Health-related quality of life and self-perceived competence of children assessed before and up to two years after epilepsy surgery. Epilepsia. 2005;46(2):258-271. https://doi.org/10.1111/j.0013-9580.2005.27304.x
  62. Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children's perspectives on living with epilepsy. Epilepsy & Behavior. 2009;14(1):179-189. https://doi.org/10.1016/j.yebeh.2008.09.025
  63. Chew J, Carpenter J, Haase AM. Young people's experiences of epilepsy: a scoping review of qualitative studies. Health & Social Work. 2017;42(3):167-176. https://doi.org/10.1093/hsw/hlx020
  64. Kim M. Health-related quality of life in adolescents with chronic diseases [dissertation]. Seoul: Chung-Ang University; 2018.