The impact of epilepsy on adolescence: a quali-quantitative investigation using focus group

Benedetta Ragni, Simona Cappelletti, Simona De Stasio, Ilaria Tondo, Nicola Specchio, Federico Vigevano, Simonetta Gentile

Abstract


Adolescents with epilepsy live with a chronic illness that influences their relationships with peers and the development of their autonomy. Questions have been raised as to whether quantitative research approaches can adequately capture patients' experiences of living with epilepsy. By comparison, qualitative research methodologies support a more in-depth exploration of patients' personal experiences, enabling epilepsy researchers to obtain meaningful and valuable insights into patients' unique point of view. Participants in the present study were eight adolescents with epilepsy (five females, three males) aged between 15 and 20 years. The data were collected via a standard focus group procedure and self-report measures (Patient Health Questionnaire for Depression; PHQ-9; Generalized Anxiety Disorder Scale; GAD-7 and Quality of Life Inventory for Adolescents; QOLIE-AD-48). Qualitative analysis of the focus group data yielded four key categories defining the psychosocial impact of epilepsy on adolescence: "Peer relationships and acceptance", "Autonomy", "School," and "Future". These outcomes suggest that epilepsy research may be significantly enhanced by the use of mixed-method approaches: adopting qualitative techniques such as focus group discussions to explore epileptic adolescents' thoughts and feelings and the psychosocial impact of epilepsy during adolescence, can inform clinical practice and promote the empowerment and quality of life of teenagers with epilepsy.


Keywords


Epilepsy; Adolescence; Psychology; Focus group.

Full Text:

PDF

References


Ambrosi, C., Zaiontz, C., Peragine, G., Sarchi, S., & Bona, F. (2019). Randomized controlled study on the effectiveness of animal-assisted therapy on depression, anxiety, and illness perception in institutionalized elderly. Psychogeriatrics, 19(1), 55–64. https://doi.org/10.1111/psyg.12367

Andelman, F. (2000). Analysis of quality of life among adolescents with epilepsy. International Journal of Adolescent Mental Health, 12 (Suppl. 1), 17–24. https://doi.org/10.1515/IJAMH.2000.12.S1.17

Appleton, R. E., Chadwick, D. W., & Sweeny, A (1997). Managing the teenager with epilepsy: paediatric to adult care. Seizure, 6(1), 27–30. https://doi.org/10.1016/s1059-1311(97)80049-0

Austin, J. K., Huster, G. A., Dunn, D. W., & Risinger, M. W. (1996). Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia, 37(12), 1228-1238. https://doi.org/10.1111/j.1528-1157.1996.tb00558.x

Austin, J. K., Perkins, S. M., Johnson, C. S., Fastenau, P. S., Byars, A. W., Degrauw, T. J., & Dunn, D. W. (2010). Self‐esteem and symptoms of depression in children with seizures: Relationships with neuropsychological functioning and family variables over time. Epilepsia, 51(10), 2074-2083. https://doi.org/10.1111/j.1528-1167.2010.02575.x

Baca, C. B., Vickrey, B. G., Hays, R. D., Vassar, S., D., & Berg, A. T. (2010). Differences in child versus parent reports of the child’s health‐related quality of life in children with epilepsy and healthy siblings. Value in Health, 13(6), 778–786. https://doi.org/10.1111/j.1524-4733.2010.00732.x

Baker, G. A., Spector, S., McGrath, Y., & Soteriou, H. (2005). Impact of Epilepsy in adolescence: A UK controlled study. Epilepsy and Behavior, 6(4), 556–562. https://doi.org/10.1016/j.yebeh.2005.03.011

Barbour, R. (2007). Doing Focus Groups. London: Sage Publications. https://dx.doi.org/10.4135/9781849208956

Beghi, E., Messina, P., Pupillo, E., Crichiutti, G., Baglietto, M. G., Veggiotti, P., … Pieri, I. (2012). Satisfaction with antiepileptic drugs in children and adolescents with newly diagnosed and chronic epilepsy. Epilepsy Research, 100(1–2), 142–151. https://doi.org/10.1016/j.eplepsyres.2012.02.005

Benson, A., O’Toole, S., Lambert, V., Gallagher, P., Shahwan, A., & Austin, J. K. (2015). To tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents. Epilepsy and Behavior, 51, 73–95. https://doi.org/10.1016/j.yebeh.2015.07.013

Camfield, C., Breau, L., & Camfield, P. (2001). Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia, 42(1), 104-112. https://doi.org/10.1046/j.1528-1157.2001.081420.x

Camfield, P., Camfield, C., & Pohlmann-Eden, B. (2012). Transition from Pediatric to Adult Epilepsy Care: A Difficult Process Marked by Medical and Social Crisis: Transition from Pediatric to Adult Epilepsy Care. Epilepsy Currents, 12(4_suppl), 13-21. https://doi.org/10.5698/1535-7511-12.4s.13

Caplan, R., Siddarth, P., Gurbani, S., Hanson, R., Sankar, R., & Shields, W. D. (2005). Depression and anxiety disorders in pediatric epilepsy. Epilepsia, 46(5), 720-730. https://doi.org/10.1111/j.1528-1167.2005.43604.x

Caplan, R., Siddarth, P., Stahl, L., Lanphier, E., Vona, P., Gurbani, S., ... & Shields, W. D. (2008). Childhood absence epilepsy: behavioral, cognitive, and linguistic comorbidities. Epilepsia, 49(11), 1838-1846. https://doi.org/10.1111/j.1528-1167.2008.01680.x

Cappelletti, S., Tondo, I., Pietrafusa, N., Renzetti, T., Pannacci, I., Gentile, S., ... & Vigevano, F. (2020). Improvement of quality of life in adolescents with epilepsy after an empowerment and sailing experience. Epilepsy & Behavior, 106, 106957. https://doi.org/10.1016/j.yebeh.2020.106957

Chapieski, L., Brewer, V., Evankovich, K., Culhane‐Shelburne, K., Zelman, K., & Alexander, A. (2005). Adaptive functioning in children with seizures: Impact of maternal anxiety about epilepsy. Epilepsy & Behavior, 7(2), 246–252. https://doi.org/10.1016/j.yebeh.2005.05.002

Chew, J., Carpenter, J., & Haase, A. M. (2017a). Young People’s Experiences of Epilepsy: A Scoping Review of Qualitative Studies. Health and Social Work, 42(3), 167–176. https://doi.org/10.1093/hsw/hlx020

Chew, J., Haase, A. M., & Carpenter, J. (2017b).Individual and family factors associated with self-esteem in young people with Epilepsy : A multiple mediation analysis. Epilepsy & Behavior, 66, 19–26. https://doi.org/10.1016/j.yebeh.2016.09.039

Chew, J., Carpenter, J., & Haase, A. M. (2019). 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), 241-250. https://doi.org/10.1111/cch.12648

Cianchetti, C., Bianchi, E., Guerrini, R., Baglietto, M. G., Briguglio, M., Cappelletti, S., ... & TASCA Study Group. (2018). Symptoms of anxiety and depression and family's quality of life in children and adolescents with epilepsy. Epilepsy & Behavior, 79, 146-153. https://doi.org/10.1016/j.yebeh.2017.11.030

Cianchetti, C., Messina, P., Pupillo, E., Crichiutti, G., Baglietto, M. G., Veggiotti, P., … Beghi, E. (2015). The perceived burden of Epilepsy: Impact on the quality of life of children and adolescents and their families. Seizure, 24(C), 93–101. https://doi.org/10.1016/j.seizure.2014.09.003

Cramer, J. A., Westbrook, L. E., Devinsky, O., Perrine, K., Glassman, M. B., & Camfield, C. (1999). Development of the quality of life in epilepsy inventory for adolescents: the QOLIE‐AD‐48. Epilepsia, 40(8), 1114–1121. https://doi.org/10.1111/j.1528-1157.1999.tb00828.x

Cramer, J. A., Blum, D., Reed, M., Fanning, K., & Epilepsy Impact Project Group. (2003). The influence of comorbid depression on seizure severity. Epilepsia, 44(12), 1578-1584. https://doi.org/10.1111/j.0013-9580.2003.28403.x

Crudgington, H., Rogers, M., Morris, H., Gringras, P., Pal, D. K., & Morris, C. (2020). Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties. Epilepsia, 61(2), 230-248. https://doi.org/10.1111/epi.16430

Davidson, M., Penney, E. D., Muller, B., & Grey, M. (2004). Stressors and self‐care challenges faced by adolescents living with type 1 diabetes. Applied Nursing Research, 17(2), 72–80. https://doi.org/10.1016/j. apnr.2004.02.006

Denzin, N., & Lincoln, Y. S. (2011). The Sage handbook of qualitative research (4th ed.). Los Angeles, CA: Sage Publications

Devinsky, O., Westbrook, L., Cramer, J., Glassman, M., Perrine, K., & Camfield, C. (1999). Risk factors for poor health‐related quality of life in adolescents with epilepsy. Epilepsia, 40(12), 1715-1720. https://doi.org/10.1111/j.1528-1157.1999.tb01588.x

DiMatteo, M. R. (2004). Social support and patient adherence to medical treatment: a meta-analysis. Health psychology, 23(2), 207. https://doi.org/10.1037/0278-6133.23.2.207

Elafros, M. A., Mulenga, J., Mbewe, E., Haworth, A., Chomba, E., Atadzhanov, M., & Birbeck, G. L. (2013). Peer support groups as an intervention to decrease epilepsy-associated stigma. Epilepsy & Behavior, 27(1), 188–192. https://doi.org/10.1016/j.yebeh.2013.01.005

Elliott, I. M., Lach, L., & Smith, M. L. (2005). 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 and Behavior, 7(4), 664–678. https://doi.org/10.1016/j.yebeh.2005.07.004

Erikson, E. H. (1963). Childhood and society (2nd ed.). New York: Norton.

Fisher, R. S., Cross, J. H., French, J. A., Higurashi, N., Hirsch, E., Jansen, F. E.,… Zuberi, S. M. (2017). Operational classification of seizure types by the International League Against Epilepsy: position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 522-30. https://doi.org/ 10.1111/epi.13670

Gebauer-Bukurov, K., Markovic, J., Sekulic, S., & Bozic, K. (2015). Social competence among well-functioning adolescents with epilepsy. Epilepsy & Behavior, 42(54–60). https://doi.org/10.1016/j.yebeh.2014.11.004

Got, I. L. S., & Cheng, S. T. (2008). The Effects of Art Facilitation on the Social Functioning of People With Developmental Disability. Art Therapy, 25(1), 32–37. https://doi.org/10.1080/07421656.2008.10129347

Graetz, B. W., Shute, R. H., & Sawyer, M. G. (2000). An Australian study of adolescents with cystic fibrosis: Perceived supportive and nonsupportive behaviors from families and friends and psychological adjustment. Journal of Adolescent Health, 26(1), 64–69. https://doi.org/10.1016/S1054‐139X(99)00026‐9

Harden, J., Black, R., & Chin, R. F. (2016). Families’ experiences of living with pediatric epilepsy: a qualitative systematic review. Epilepsy & Behavior, 60, 225–237. https://doi.org/10.1016/j.yebeh.2016.04.034

Helgeson, V. S., Reynolds, K. A., Siminerio, L., Escobar, O., & Becker, D. (2008). Parent and adolescent distribution of responsibility for diabetes self‐care: Links to health outcomes. Journal of Pediatric Psychology, 33(5), 497–508. https://doi.org/10.1093/jpepsy/jsm081

Heary, C., & Hennessy, E. (2006). Focus groups versus individual interviews with children: A comparison of data. Irish Journal of Psychology, 27(1–2), 58–68. https://doi.org/10.1080/03033910.2006.10446228

Hoare, P., & Mann, H. (1994). Self-esteem and behavioural adjustment in children with epilepsy and children with diabetes. Journal of Psychosomatic Research, 38(8), 859-869. https://doi.org/10.1016/0022-3999(94)90073-6

Hoare, P., & Russell, M. (1995). The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Developmental Medicine & Child Neurology, 37(8), 689-696. https://doi.org/10.1111/j.1469-8749.1995.tb15015.x

Jantzen, S., Müller-Godeffroy, E., Hallfahrt-Krisl, T., Aksu, F., Püst, B., Kohl, B., ... & Thyen, U. (2009). FLIP&FLAP—a training programme for children and adolescents with epilepsy, and their parents. Seizure, 18(7), 478-486. https://doi.org/10.1016/j.seizure.2009.04.007

Kerr, C., Nixon, A., & Angalakuditi, M. (2011). The impact of epilepsy on children and adult patients’ lives: Development of a conceptual model from qualitative literature. Seizure, 20(10), 764–774. https://doi.org/10.1016/j.seizure.2011.07.007

King, G., Lawm, M., King, S., Rosenbaum, P., Kertoy, M. K., & Young, N. L. (2003). A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Physical & Occupational Therapy in Pediatrics, 23(1), 63–90. https://doi.org/10.1080/J006v23n01_05

Kroenke, K., Spitzer, R. L., & Williams, J. B. (2001). The PHQ‐9: validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525-1497.2001.016009606.x

Kwong, K. L., Lam, D., Tsui, S., Ngan, M., Tsang, B., Lai, T. S., & Lam, S. M. (2016). Self-esteem in adolescents with epilepsy: psychosocial and seizure-related correlates. Epilepsy & Behavior, 63, 11–122. https://doi.org/10.1016/j.yebeh.2016.07.032

Lee, A., Hamiwka, L. D., Sherman, E., & Wirrell, E. C. (2008). Self‐concept in adolescents with epilepsy: Biological and social correlates. Pediatric Neurology, 38(5), 335–339. https://doi.org/10.1016/j. pediatrneurol.2008.01.011

Lee, M. E., Kim, G. E., Lee, H. W., & Kim, E. J. (2019). A Study on the Factors Affecting Quality of Life in Children and Adolescents with Epilepsy and Their Families. Korean Journal of Biological Psychiatry, 26(2), 79-87. http://doi.org/10.0000/kjbp.2019.26.2.79

Lucchesi, C., Baldacci, F., Cafalli, M., Dini, E., Giampietri, L., Siciliano, G., & Gori, S. (2016). Fatigue, sleep–wake pattern, depressive and anxiety symptoms and body-mass index: analysis in a sample of episodic and chronic migraine patients. Neurological Sciences, 37(6), 987–989. https://doi.org/10.1007/s10072-016-2505-1

MacLeod, J. S., & Austin, J. K. (2003). Stigma in the lives of adolescents with epilepsy: a review of the literature. Epilepsy & Behavior, 4(2),112–7. https://doi.org/10.1016/s1525-5050(03)00007-6

McEwan, M. J., Espie, C. A., & Metcalfe, J., (2004a). A systematic review of the contribution of qualitative research to the study of the quality of life in children and adolescents with epilepsy. Seizure, 13(1), 3–14. https://doi.org/10.1016/s1059-1311(03)00081-5

McEwan, M. J., Espie, C. A., Metcalfe, J., Brodie, M. J., & Wilson, M. T. (2004b). Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure, 13(1), 15–31. https://doi.org/10.1016/s1059-1311(03)00080-3

Menchetti, M., Sighinolfi, C., Di Michele, V., Peloso, P., Nespeca, C., Bandieri, P. V., … Berardi, D. (2013). Effectiveness of collaborative care for depression in Italy. A randomized controlled trial. General Hospital Psychiatry, 35(6), 579–586. https://doi.org/10.1016/j.genhosppsych.2013.07.009

Michaud, P.-A., Suris, J.‐C., Thomas, L. R., Kahlert, C., Rudin, C., & Cheseaux, J.‐J. (2009). To say or not to say: A qualitative study on the disclosure of their condition by human immunodeficiency virus–positive adolescents. Journal of Adolescent Health, 44(4), 356–362. https://doi.org/10.1016/j.jadohealth.2008.08.004

Moffat, C., Dorris, L., Connor, L., & Espie, C. A. (2009). 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 and Behavior, 14(1), 179–189. https://doi.org/10.1016/j.yebeh.2008.09.025

Mohamed, I. N., & Mohamed, S. E. (2020). Quality of life among adolescents with epilepsy: An outpatient based study, Khartoum, Sudan. Khartoum Medical Journal, 13(02), 1714-1721.

Moon, B. L. (2012). The dyamics of art as therapy with adolescents. Springfield, IL: Charles C. Thomas

Mula, M., von Oertzen, T. J., Cock, H. R., Lozsadi, D. A., & Agrawal, N. (2016). Clinical correlates of memory complaints during AED treatment. Acta Neurologica Scandinavica, 134(5), 368-373. https://doi.org/10.1111/ane.12553

Pai, A. L. H., & Ostendorf, H. M. (2011). Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: A literature review. Children's Health Care, 40(1), 16–33. https://doi.org/10.1080/02739615.2011.537934

Paolicchi, J. M. (2002). Epilepsy in adolescents: diagnosis and treatment. Adolescent Medicine Clinics, 13(3), 443–61.

Perkins, D. D., & Zimmerman, M. A. (1995). Empowerment theory, research, and application. American journal of community psychology, 23(5), 569-579. https://doi.org/10.1007/bf02506982.

Picardi, A., Adler, D., Abeni, D., Chang, H., Pasquini, P., Rogers, W., & Bungay, K. (2005). Screening for Depressive Disorders in Patients with Skin Diseases: A Comparison of Three Screeners. Acta Dermato-Venereologica, 85(5), 414–419. https://doi.org/10.1080/00015550510034966

Plante, W. A., Lobato, D., & Engel, R. (2001). Review of group interventions for pediatric chronic conditions. Journal of Pediatric Psychology, 26(7), 435–453. https://doi.org/10.1093/jpepsy/26.7.435

Rapport, F., Clement, C., Doel, M. A., & Hutchings, H. A. (2015). Qualitative research and its methods in Epilepsy: Contributing to an understanding of patients’ lived experiences of the disease. Epilepsy and Behavior, 45, 94–100. https://doi.org/10.1016/j.yebeh.2015.01.040

Räty, L. K. A., Larsson, B. M. W., & Söderfeldt, B. A. (2003). Health‐related quality of life in youth: A comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. Journal of Adolescent Health, 33(4), 252–258. https://doi.org/10.1016/S1054‐139X(03)00101‐0

Rodenburg, R., Meijer, A. M., Dekovic, M., & Aldenkamp, A. P. (2005). Family factors and psychopathology in children with epilepsy: A literature review. Epilepsy & Behavior, 6(4), 488–503. https://doi.org/10.1016/j. yebeh.2005.03.006

Siegel, D. J. (2014). La Mente Adolescente. Milano, IT: Raffaello Cortina Ed.

Spitzer, R. L., Kroenke, K., Williams, J. B., & Lowe, B. (2006). A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of Internal Medicine, 166(10), 1092–1097. 10.1001/archinte.166.10.1092

Steinberg, L., & Morris, A. S. (2001). Adolescent development. Annual Review of Psychology, 52(1), 83–110. https://doi.org/10.1146/annurev.psych.52.1.83

Taylor, R. M., Gibson, F., & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: A critical review of the literature. Journal of Clinical Nursing, 17(23), 3083–3091. https://doi.org/10.1111/j.1365-2702.2008.02629.x

Teymoori, A., Real, R., Gorbunova, A., Haghish, E. F., Andelic, N., Wilson, L., … von Steinbüchel, N. (2019). Measurement invariance of assessments of depression (PHQ-9) and anxiety (GAD-7) across sex, strata and linguistic backgrounds in a European-wide sample of patients after Traumatic Brain Injury. Journal of Affective Disorders, 262, 278-285. https://doi.org/10.1016/j.jad.2019.10.035

Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society, 19(6), 569–583. https://doi.org/10.1080/0968759042000252506

Thomson, L., Fayed, N., Sedarous, F., & Ronen, G. M. (2014). Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: A scoping review. Developmental Medicine and Child Neurology, 56(5), 421–433. https://doi.org/10.1111/dmcn.12335

Tombini, M., Assenza, G., Quintiliani, L., Ricci, L., Lanzone, J., Ulivi, M., & Di Lazzaro, V. (2020). Depressive symptoms and difficulties in emotion regulation in adult patients with epilepsy: Association with quality of life and stigma. Epilepsy & Behavior, 107, 107073. https://doi.org/10.1016/j.yebeh.2020.107073

Willing, C. (2013). Introducing qualitative research in psychology. Berkshire: McGraw-Hill House.




DOI: https://doi.org/10.6092/2282-1619/mjcp-2428

Refbacks

  • There are currently no refbacks.