Health-related quality of life in children with epilepsy: a concept analysis
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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 andinteractions 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.
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 andinteractions 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.
참고문헌 (64)
- Ettore Beghi, "Global, regional, and national burden of epilepsy, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016", The Lancet Neurology, 18(4), pp.357~375 (2019), Elsevier BV[DOI]
- Kari Modalsli Aaberg, "Incidence and Prevalence of Childhood Epilepsy: A Nationwide Cohort Study", Pediatrics, 139(5) (2017), American Academy of Pediatrics (AAP)[DOI]
- Stevanovic D, "Epilepsy in children: clinical and social aspects" (2011), IntechOpen
- 박영숙, "청소년 간질 환자의 생활세계 경험", 기본간호학회지, 18(1), pp.6~18 (2011), 기본간호학회
- Gabriel M Ronen, "Health-related quality of life in childhood epilepsy: moving beyond 'seizure control with minimal adverse effects'", Health and Quality of Life Outcomes, 1(1), pp.36~ (2003), Springer Science and Business Media LLC[DOI]
- Lee SY, "Review : review on health-related quality of life(HRQL)", Korean Journal of Neurogastroenterology and Motility, 7(1), pp.6~17 (2001)
- "Healthrelated quality of life and well-being" (2010)[URL]
- Ko S, "Calculation of healthy life expectancy in South Korea", Health Welfare Issue & Focus, (247), pp.1~8 (2014)
- Drotar D, "Measuring health-related quality of life in children and adolescents: implications for research and practice" (1998), Lawrence Erlbaum Associates
- Yu SY, "Measurement and variation of HRQoL : comparison among methods and utility score changes by health status", pp.2016
- Walker LO, "Strategies for theory construction in nursing", pp.2005, Pearson
- Andrea C. Tricco, "PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation", Annals of Internal Medicine, 169(7), pp.467~473 (2018), American College of Physicians[DOI]
- "Health"[URL]
- "Health"[URL]
- "Health"[URL]
- "Quality of life"[URL]
- Cambridge Dictionary, "Quality of life", Cambridge University Press
- "Health status" (2009)[URL]
- Milad Karimi, "Health, Health-Related Quality of Life, and Quality of Life: What is the Difference?", PharmacoEconomics, 34(7), pp.645~649 (2016), Springer Science and Business Media LLC[DOI]
- 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, 62(7), pp.e375~e383 (2016)
- Carol Estwing Ferrans, "Conceptual Model of Health‐Related Quality of Life", Journal of Nursing Scholarship, 37(4), pp.336~342 (2005), Wiley[DOI]
- M. J. Calvert, "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, 28(6), pp.513~521 (2003), Hindawi Limited[DOI]
- Alison R. Snyder Valier, "Disablement Model and Health-Related Quality of Life Classification for Patient-Reported Outcomes Measurement Information System (PROMIS) Instruments", Journal of Athletic Training, 53(12), pp.1206~1213 (2018), Journal of Athletic Training[DOI]
- 박미숙, "간질(뇌전증)장애인의 삶의 질", 한국장애인복지학, (24), pp.83~108 (2014), 한국장애인복지학회[DOI]
- Kristin A. Loiselle, "Trajectories of Health-Related Quality of Life Among Children With Newly Diagnosed Epilepsy", Journal of Pediatric Psychology, 41(9), pp.1011~1021 (2016), Oxford University Press (OUP)[DOI]
- Heber de Souza Maia Filho, "Development and validation of a health related quality of life questionnaire for Brazilian children with epilepsy: preliminary findings", Arquivos de Neuro-Psiquiatria, 63(2b), pp.389~394 (2005), FapUNIFESP (SciELO)[DOI]
- Lucyna M. Lach, "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, 15(7), pp.1161~1171 (2006), Springer Science and Business Media LLC[DOI]
- 전미영, "일 지역주민의 건강관련 삶의 질에 영향을 미치는 요인: 생태학적 모형(Ecological Model)의 적용", 한국생활환경학회지, 28(1), pp.39~48 (2021), 한국생활환경학회[DOI]
- Jiyoung Park, "Ecological predictors of health-related quality of life (HRQoL) among children from low-income families in South Korea", Children and Youth Services Review, 81, pp.238~245 (2017), Elsevier BV[DOI]
- Warren Boling, "Quality of Life and Stigma in Epilepsy, Perspectives from Selected Regions of Asia and Sub-Saharan Africa", Brain Sciences, 8(4), pp.59~ (2018), MDPI AG[DOI]
- D. K. Pal, "Predictors of parental adjustment to children’s epilepsy in rural India", Child: Care, Health and Development, 28(4), pp.295~300 (2002), Wiley[DOI]
- Judith Chew, "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, 45(2), pp.241~250 (2019), Wiley[DOI]
- Holly Crudgington, "Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy", Epilepsy & Behavior, 112, pp.107372~ (2020), Elsevier BV[DOI]
- Irene M. Elliott, "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, 7(4), pp.664~678 (2005), Elsevier BV[DOI]
- C. Kerr, "The impact of epilepsy on children and adult patients’ lives: Development of a conceptual model from qualitative literature", Seizure, 20(10), pp.764~774 (2011), Elsevier BV[DOI]
- M.J. MCEWAN, "Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods", Seizure, 13(1), pp.15~31 (2004), Elsevier BV[DOI]
- Gabriel M. Ronen, "Health-related quality of life in childhood disorders: a modified focus group technique to involve children", Quality of Life Research, 10(1), pp.71~79 (2001), Springer Science and Business Media LLC[DOI]
- Lauren Thomson, "Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review", Developmental Medicine & Child Neurology, 56(5), pp.421~433 (2013), Wiley[DOI]
- Aronu AE, "Health-related quality of life in children and adolescents with epilepsy in Enugu : need for targeted intervention", Nigerian Journal of Clinical Practice, 24(4), pp.517~524 (2021)
- Bronfenbrenner U, "Six theories of child development: revised formulations and current issues", pp.187~249 (1992), Jessica Kingsley
- Susan Hightower, "A qualitative descriptive study of the lived experiences of school-aged children with epilepsy", Journal of Pediatric Health Care, 16(3), pp.131~137 (2002), Elsevier BV[DOI]
- Arden Lee, "Self-Concept in Adolescents with Epilepsy: Biological and Social Correlates", Pediatric Neurology, 38(5), pp.335~339 (2008), Elsevier BV[DOI]
- Nawal F. Abdel Ghaffar, "Improving public stigma, sociocultural beliefs, and social identity for people with epilepsy in the Aseer region of Saudi Arabia", Epilepsy & Behavior Reports, 16, pp.100442~ (2021), Elsevier BV[DOI]
- Malachy Bishop, "Teachers’ knowledge about epilepsy and attitudes toward students with epilepsy: Results of a national survey", Epilepsy & Behavior, 8(2), pp.397~405 (2006), Elsevier BV[DOI]
- Mark A. Ferro, "Trajectories of health‐related quality of life in children with epilepsy: A cohort study", Epilepsia, 54(11), pp.1889~1897 (2013), Wiley[DOI]
- S. Jantzen, "FLIP&FLAP—A training programme for children and adolescents with epilepsy, and their parents", Seizure, 18(7), pp.478~486 (2009), Elsevier BV[DOI]
- Howard K. Koh, "Toward an Integrated Public Health Approach for Epilepsy in the 21st Century", Preventing Chronic Disease, 11 (2014), Centers for Disease Control and Prevention (CDC)[DOI]
- Giulia Savarese, "Teachers of various school grades and representations of epilepsy: problems, relational aspects and perspectives of life quality", Italian Journal of Pediatrics, 41(1) (2015), Springer Science and Business Media LLC[DOI]
- Yelena P. Wu, "Parent and family stress factors predict health‐related quality in pediatric patients with new‐onset epilepsy", Epilepsia, 55(6), pp.866~877 (2014), Wiley[DOI]
- Gabriel M. Ronen, "Health‐related Quality of Life in Children with Epilepsy: Development and Validation of Self‐report and Parent Proxy Measures", Epilepsia, 44(4), pp.598~612 (2003), Wiley[DOI]
- Ann Jacoby, "Stigma, epilepsy, and quality of life", Epilepsy & Behavior, 3(6), pp.10~20 (2002), Elsevier BV[DOI]
- Simona Mlinar, "Persons with Epilepsy: Between Social Inclusion and Marginalisation", Behavioural Neurology, 2016, pp.1~10 (2016), Hindawi Limited[DOI]
- Kritika Gosain, "Understanding the Role of Stigma and Misconceptions in the Experience of Epilepsy in India: Findings From a Mixed-Methods Study", Frontiers in Sociology, 7 (2022), Frontiers Media SA[DOI]
- Sintayehu Asnakew, "Knowledge and attitude of the community towards epilepsy in Northwest Ethiopia: A huge gap on knowledge and attitude of the community", Epilepsy & Behavior Reports, 15, pp.100422~ (2021), Elsevier BV[DOI]
- Joan K. Austin, "Measuring stigma in children with epilepsy and their parents: instrument development and testing", Epilepsy & Behavior, 5(4), pp.472~482 (2004), Elsevier BV[DOI]
- Janet A. Funderburk, "Does attitude toward epilepsy mediate the relationship between perceived stigma and mental health outcomes in children with epilepsy?", Epilepsy & Behavior, 11(1), pp.71~76 (2007), Elsevier BV[DOI]
- Mirella De Civita, "Evaluating Health-Related Quality-of-Life Studies in Paediatric Populations", PharmacoEconomics, 23(7), pp.659~685 (2005), Springer Science and Business Media LLC[DOI]
- Puneet Jain, "Seizure freedom improves health‐related quality of life after epilepsy surgery in children", Developmental Medicine & Child Neurology, 62(5), pp.600~608 (2019), Wiley[DOI]
- William A. Schraegle, "The relationship of seizure focus with depression, anxiety, and health-related quality of life in children and adolescents with epilepsy", Epilepsy & Behavior, 68, pp.115~122 (2017), Elsevier BV[DOI]
- Rachel M Taylor, "A concept analysis of health‐related quality of life in young people with chronic illness", Journal of Clinical Nursing, 17(14), pp.1823~1833 (2008), Wiley[DOI]
- Ron Van Empelen, "Health‐related Quality of Life and Self‐perceived Competence of Children Assessed before and up to Two Years after Epilepsy Surgery", Epilepsia, 46(2), pp.258~271 (2005), Wiley[DOI]
- Catriona Moffat, "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, 14(1), pp.179~189 (2009), Elsevier BV[DOI]
- Judith Chew, "Young People's Experiences of Epilepsy: A Scoping Review of Qualitative Studies", Health & Social Work, 42(3), pp.167~176 (2017), Oxford University Press (OUP)[DOI]
- Kim M, "Health-related quality of life in adolescents with chronic diseases", pp.2018
