„Jsem jiný, jsem slaný… a umřu dříve“ (dítě/žák s cystickou fibrózou v edukačním prostředí)
Bd.28,Nr.2(2018)
V současném pojetí společného vzdělávání může učitel vykonávat přímou pedagogickou činnost v diverzní společnosti „různých“ žáků. Mezi nimi mohou být rovněž žáci a žákyně s cystickou fibrózou (CF). Jde o nevyléčitelné, progredující a smrtelné onemocnění, které svým nositelům přináší četné zásahy a limitace v každodenních aktivitách, včetně školských. Cílem přehledové studie je analyzovat, popsat a interpretovat vybrané oblasti života dětí, žáků/žákyní a studentů/studentek s tímto onemocněním, které mohou zakládat „jinakost/odlišnost“ v edukačním procesu a prostředí. Metodický rámec byl naplněn analytickou, syntetickou a interpretační činností v podobě monografické procedury založené na rešeršní činnosti zahraničních odborných článků a studií v dostupných databázích. Mezi tematické oblasti, které mohou u osob s CF zakládat „jinakost/odlišnost“, byla zařazena témata symptomatologie CF, přístupu okolí (stigma/stigmatizace, viktimizace, postoje okolí apod.), dále subjektivity stavu (prožívání, osobní zkušenosti, strach ze smrti, strach z progrese onemocnění, úzkost, naděje, deprese, resilience, self-efficacy), oblast žáky s CF „vyžadované“ podpory (psychologické, psychosociální, emoční, vztahové, rodičovské apod.) a rovněž specifika výchovně-vzdělávacího procesu. „Jinakost/odlišnost“ popisovaná v rámci CF spočívá ve specifických potřebách žáků, které vyplývají z případných změn zdravotního stavu a postojů jejich okolí. Současný stav vzdělávání v našich podmínkách, který respektuje požadavek společného vzdělávání, by měl případné „jinakosti/odlišnosti“ a rozdílnosti „stírat“, a to primárně efektivní pregraduální přípravou učitelů a kontinuálním vzděláváním v této oblasti.
inakost/odlišnost; cystická fibróza; limitace; strach; smrt; edukace; psychosociální podpora
Abbott, J., Hart, A., Morton, A., Gee, L., & Conway, S. (2008). Health-related quality of life in adults with cystic fibrosis: The role of coping. Journal of Psychosomatic Research, 64(2), 149–157. https://doi.org/10.1016/j.jpsychores.2007.08.017">https://doi.org/10.1016/j.jpsychores.2007.08.017
Adamus, P. (2015). Metodika hodnocení kvality inkluzivní školy. Opava: Slezská univerzita v Opavě.
Admi, H. (1996). Growing up with a chronic health condition: A model of an ordinary lifestyle. Qualitative Health Research, 6(2), 163–183. https://doi.org/10.1177/104973239600600203">https://doi.org/10.1177/104973239600600203
Badlan, K. (2006). Young people living with cystic fibrosis: An insight into their subjective experience. Health & Social Care in the Community, 14(3), 264–270. https://doi.org/10.1111/j.1365-2524.2006.00619.x">https://doi.org/10.1111/j.1365-2524.2006.00619.x
Barker, D. H., Driscoll, K. A., Modi, A. C., Light, M. J., & Quittner, A. L. (2012). Supporting cystic fibrosis disease management during adolescence: The role of family and friends. Child: Care, Health and Development, 38(4), 497–504.
Besier, T., Born, A., Henrich, G., Hinz, A., Quittner, A. L., & Goldbeck, L. (2011). Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis. Pediatric Pulmonology, 46(7), 672–682. https://doi.org/10.1002/ppul.21423">https://doi.org/10.1002/ppul.21423
Berge, J. M., & Patterson, J. M. (2004). Cystic fibrosis and the family: A review and critique of the literature. Families, Systems & Health, 22(1), 74–100. https://doi.org/10.1037/1091-7527.22.1.74">https://doi.org/10.1037/1091-7527.22.1.74
Berge, J. M., Patterson, J. M., Goetz, D., & Milla, C. (2007). Gender differences in young adults’ perceptions of living with cystic fibrosis during the transition to adulthood: A qualitative investigation. Families, Systems & Health, 25(2), 190–203. https://doi.org/10.1037/1091-7527.25.2.190">https://doi.org/10.1037/1091-7527.25.2.190
Boyle, I. R., di Sant'Agnese, P. A., Sack, S., Millican, F., & Kulzycki, L. L. (1976). Emotional adjustment of adolescents and young adults with cystic fibrosis. Journal of Pediatrics, 88(2), 318–326. https://doi.org/10.1016/S0022-3476(76)81011-6">https://doi.org/10.1016/S0022-3476(76)81011-6
Bradley-Klug, K. L., Sundman, A. N., Nadeau, J., Cunningham, J., & Ogg, J. (2010). Communication and collaboration with schools: Pediatricians’ perspectives. Journal of Applied School Psychology, 26(4), 263–281. https://doi.org/10.1080/15377903.2010.518583">https://doi.org/10.1080/15377903.2010.518583
Cannadine, D. (2013). The undivided past: Humanity beyond our differences. New York: Alfred A. Knopf.
Carson, M. A. (2015). Identifying health, educational, and social emotional needs and potential intervention strategies for children with cystic fibrosis first entering elementary school (Disertační práce). Dostupné z https://search.proquest.com/docview/1722047962?pqorigsite=gscholar.
Cataldo, J. K., Slaughter, R., Jahan, T. M., Pongqun, V. L., & Hwang, W. J. (2011). Measuring stigma in people with lung cancer: Psychometric testing of the Cataldo lung cancer stigma scale. Oncology Nursing Forum, 38(1), 46–54. https://doi.org/10.1188/11.ONF.E46-E54">https://doi.org/10.1188/11.ONF.E46-E54
Cystic Fibrosis Canada. (2014). Education and cystic fibrosis. Dostupné z http://www.cysticfibrosis.ca/uploads/resources/overall/EN_EDUCATION_AND_CF_WEB_Compressed.pdf.
Cystic Fibrosis Trust. (2016). School and cystic fibrosis: A guide for parents from pre-school to primary. Dostupné z https://www.cysticfibrosis.org.uk/~/media/documents/life-withcf/education-and-employment/schools-pack-2016.ashx.
D’Auria, J. P., Christian, B. J., & Richardson, L. F. (1997). Through the looking glass: Children’s perceptions of growing up with cystic fibrosis. The Canadian Journal of Nursing Research, 29(4), 99–112.
D’Auria, J. P., Christian, B. J., Henderson, Z. G., & Haynes, B. (2000). The company they keep: The influence of peer relationships on adjustment to cystic fibrosis during adolescence. Journal of Pediatric Nursing, 15(3), 175–182. https://doi.org/10.1053/jn.2000.6023">https://doi.org/10.1053/jn.2000.6023
Dogan, S. (2000). Turkey, as “other” and being “othered“ (Závěrečná práce). Dostupné z http://selcengur.com/TurkeyAsOther.pdf.
Ernst, M. M., Johnson, M. C., & Stark, L. J. (2010). Developmental and psychosocial issues in cystic fibrosis. Pediatric Clinics of North America, 58(4), 865–885. https://doi.org/10.1016/j.pcl.2011.06.004">https://doi.org/10.1016/j.pcl.2011.06.004
Fidika, A., Herle, M., Herschbach, P., & Goldbeck, L. (2015). Fear of disease progression questionnaire for parents: Psychometric properties based on a sample of caregivers of children and adolescents with cystic fibrosis. Journal of Psychosomatic Research, 79(1), 49–54. https://doi.org/10.1016/j.jpsychores.2015.02.014">https://doi.org/10.1016/j.jpsychores.2015.02.014
Fila, L. (2014). Cystická fibróza u dospělých. Interní medicína, 16(2), 54–60.
Gallos, J. V., & Ramsey, V. J. (1997). Teaching diversity: Listening to the soul, speaking from the heart. San Francisco: Jossey-Bass Publishers.
Gjengedal, E., Hanestad, B. R., Rustøen, T., & Wahl, A. K. (2003). Growing up and living with cystic fibrosis: Everyday life and encounters with health care and social services – a qualitative study. Advances in Nursing Science, 26(2), 149–159. https://doi.org/10.1097/00012272-200304000-00007">https://doi.org/10.1097/00012272-200304000-00007
Glasscoe, C. A., & Quittner, A. L. (2003). Psychological interventions for cystic fibrosis. The Cochrane database of systematic reviews. Dostupné z http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003148/abstract.
Goffman, E. (1963). Stigma: Notes on the management of a spoiled identity. Harmondsworth: Penguin.
Goldbeck, L., Fidika, A., Herle, M., & Quittner, A. L. (2014). Psychological interventions for individuals with cystic fibrosis and their families. The Cochrane database of systematic reviews. Dostupné z http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD003148.pub3/abstract.
Gormley, H., Duff, A., Brownlee, K., & Hearnshaw, C. (2014). What parents of children with cystic fibrosis expect of educational events. Nursing Children & Young People, 26(7), 21–24. https://doi.org/10.7748/ncyp.26.7.21.e486">https://doi.org/10.7748/ncyp.26.7.21.e486
Grieve, A. J., Tluczek, A., Racine-Gilles, C. N., Laxova, A., Albers, C. A., & Farrell, P. M. (2011). Associations between academic achievement and psychosocial variables in adolescents with cystic fibrosis. The Journal of School Health, 81(11), 713–720. https://doi.org/10.1111/j.1746-1561.2011.00648.x">https://doi.org/10.1111/j.1746-1561.2011.00648.x
Groeneveld, I. F., Sosa, E. S., Pérez, M., Fiuza-Luces, C., Gonzalez-Saiz, L., Gallardo, C., López-Mojares, L. M., Ruiz, J. R., & Lucia, A. (2012). Health-related quality of life of Spanish children with cystic fibrosis. Quality of Life Research, 21(10), 1837–1845. https://doi.org/10.1007/s11136-011-0100-8">https://doi.org/10.1007/s11136-011-0100-8
Hafetz, J., & Miller, V. A. (2010). Child and parent perceptions of monitoring in chronic illness management: A qualitative study. Child: Care, Health and Development, 36(5), 655–662.
Hagel, L. D., Mainieri, A. S., Zeni, C. P., & Wagner, M. B. (2009). Brief report: Accuracy of a 16-item questionnaire based on the HEADSS approach (QBH-16) in the screening of mental disorders in adolescents with behavioural problems in secondary care. Journal of Adolescence, 32(3), 753–761. https://doi.org/10.1016/j.adolescence.2008.08.009">https://doi.org/10.1016/j.adolescence.2008.08.009
Hanxhiu, A., McKay, K., Singh-Grewal, D., & Fitzgerald, D. A. (2017). Question 10: Could the burden of care with cystic fibrosis impact on educational outcomes? Paediatric Respiratory Reviews, 23, 56–60.
Higham, L., Ahmed, S., & Ahmed, M. (2013). Hoping to live a “normal“ life whilst living with unpredictable health and fear of death: Impact of cystic fibrosis on young adults. Journal of Genetic Counselling, 22(3), 374–383. https://doi.org/10.1007/s10897-012-9555-1">https://doi.org/10.1007/s10897-012-9555-1
Chrastina, J., Smékalová, L., Maštalíř, J. & Snopek, P. (2015). Pedagogicko-psychologické aspekty života osob s diagnózou cystická fibróza – dopad do formálního vzdělávání a dalších forem celoživotního vzdělávání. In Sborník příspěvků z mezinárodní vědecké konference Evropské pedagogické fórum 2015: přínosy, výzvy, očekávání (s. 97–108). Hradec Králové: Magnanimitas.
Christian, B. J., & D’Auria, J. P. (1997). The child’s eye: Memories of growing up with cystic fibrosis. Journal of Paediatric Nursing, 12(1), 3–12. https://doi.org/10.1016/S0882-5963(97)80016-4">https://doi.org/10.1016/S0882-5963(97)80016-4
Christian, B. J., D’Auria, J. P., & Moore, C. B. (1999). Playing for time: Adolescent perspectives of lung transplantation for cystic fibrosis. Journal of Paediatric Health Care, 13(3), 120–125. https://doi.org/10.1016/S0891-5245(99)90073-1">https://doi.org/10.1016/S0891-5245(99)90073-1
Jamieson, N., Fitzgerald, D., Singh-Grewal, D., Hanson, C. S., Craig, J. C., & Tong, A. (2014). Children’s experiences of cystic fibrosis: A systematic review of qualitative studies. Paediatrics, 133(6), 1683–1697. https://doi.org/10.1542/peds.2014-0009">https://doi.org/10.1542/peds.2014-0009
Kappler, M., & Griese, M. (2009). Mukoviszidose. Zwischen Normalität und Behinderung. Monatsschr Kinderheilkd, 157, 121–128. https://doi.org/10.1007/s00112-009-1943-8">https://doi.org/10.1007/s00112-009-1943-8
Koch, L., Jansen, L., Brenner, H., & Arndt, V. (2013). Fear of recurrence and disease progression in longterm (≥5 years) cancer survivors: A systematic review of quantitative studies. Psycho-Oncology, 22(1), 1–11. https://doi.org/10.1002/pon.3022">https://doi.org/10.1002/pon.3022
Lebel, S., & Devins, G. (2008). Stigma in cancer patients whose behaviour may have contributed to their disease. Future Oncology, 4(5), 717–773. https://doi.org/10.2217/14796694.4.5.717">https://doi.org/10.2217/14796694.4.5.717
McDonald, C. M., Haberman, D., & Brown, N. (2013). Self-efficacy: Empowering parents of children with cystic fibrosis. Journal of Cystic Fibrosis, 12(5), 538–543. https://doi.org/10.1016/j.jcf.2012.11.014">https://doi.org/10.1016/j.jcf.2012.11.014
Mighten, J., & Overend, J. (2016). Cystic fibrosis and school information for schools. Dostupné z https://www.nuh.nhs.uk/handlers/downloads.ashx?id=26844.
Moola, F. J., & Norman, M. E. (2011). “Down the rabbit hole”: Enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time. Child: Care, Health and Development, 37(6), 841–851.
Nick, J. A., Chacon, C. S., Brayshaw, S. J., Jones, M. C., Barboa, C. M., St Clair, C. G., … Sontag, M. K. (2010). Effects of gender and age at diagnosis on disease progression in long-term survivors of cystic fibrosis. American Journal of Respiratory and Critical Care Medicine, 182(5), 614–626. https://doi.org/10.1164/rccm.201001-0092OC">https://doi.org/10.1164/rccm.201001-0092OC
Oliver, K. N., Free, M. L., Bok, C., McCoy, K. S., Lemanek, K. L., & Emery, C. F. (2014). Stigma and optimism in adolescents and young adults with cystic fibrosis. Journal of Cystic Fibrosis, 13(6), 737–744. https://doi.org/10.1016/j.jcf.2014.04.005">https://doi.org/10.1016/j.jcf.2014.04.005
Pakhale, S., Armstrong, M., Holly, C., Edjoc, R., Gaudet, E., Aaron, S., Tasca, G., Cameron, W., & Balfour, L. (2014). Assessment of stigma in patients with cystic fibrosis. BMC Pulmonary Medicine, 14, 76. https://doi.org/10.1186/1471-2466-14-76">https://doi.org/10.1186/1471-2466-14-76
Palmer, M. L., & Boisen, L. S. (2002). Cystic fibrosis and the transition to adulthood. Social Work in Health Care, 36(1), 45–58.
Pfeffer, P. E., Pfeffer, J. M., & Hodson, M. E. (2003). The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults. Journal of Cystic Fibrosis, 2(2), 61–68. https://doi.org/10.1016/S1569-1993(03)00020-1">https://doi.org/10.1016/S1569-1993(03)00020-1
Pizzignacco, T. M., de Mello, D. F., & de Lima, R. A. (2010). Stigma and cystic fibrosis. Revista Latino-Americana De Enfermagem, 18(1), 139–142. https://doi.org/10.1590/S0104-11692010000100021">https://doi.org/10.1590/S0104-11692010000100021
Quittner, A. L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., … Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of The International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097. https://doi.org/10.1136/thoraxjnl-2014-205983">https://doi.org/10.1136/thoraxjnl-2014-205983
Reid, D. W., Blizzard, C. L., Shugg, D. M., Flowers, C., Cash, C., & Greville, H. M. (2011). Changes in cystic fibrosis mortality in Australia, 1979–2005. The Medical Journal of Australia, 195(7), 392–395.
Russo, K., Donnelly, M., & Reid, A. J. M. (2006). Segregation: The perspectives of young patients and their parents. Journal of Cystic Fibrosis, 5(2), 93–99. https://doi.org/10.1016/j.jcf.2005.12.002">https://doi.org/10.1016/j.jcf.2005.12.002
Segal, T. Y. (2008). Adolescence: What the cystic fibrosis team needs to know. Journal of the Royal Society of Medicine, 101(1), 15–27. https://doi.org/10.1258/jrsm.2008.s18005">https://doi.org/10.1258/jrsm.2008.s18005
Slowík, J. (2007). Speciální pedagogika. Praha: Grada.
Sochocka, L., Noczyńska, A., & Wojtyłko, A. (2011). Choroba przewlekła w życiu dziecka. Aspekt społeczny oraz psychologiczny na przykładzie Cukrzycy typu 1. Medycyna Środowiskowa, 14(3), 59–63.
Staszak, J.-F. (2008). Other/Otherness. In R. Kitchin & N. Thrift (Eds.), International encyclopedia of human geography (s. 43–47). Oxford: Elsevier.
Strawhacker, M. T., & Wellendorf, J. (2004). Caring for children with cystic fibrosis: A collaborative clinical and school approach. The Journal of School Nursing, 20(1), 5–15. https://doi.org/10.1177/10598405040200010301">https://doi.org/10.1177/10598405040200010301
Tluczek, A., Clark, R., McKechnie, A. C., & Brown, R. L. (2015). Factors affecting parent-child relationships one year after positive newborn screening for cystic fibrosis or congenital hypothyroidism. Journal of Developmental and Behavioral Pediatrics, 36(1), 24–34. https://doi.org/10.1097/DBP.0000000000000112">https://doi.org/10.1097/DBP.0000000000000112
Tong, A., Jones, J., Craig, J. C., & Singh-Grewal, D. (2012). Children’s experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies. Arthritis Care & Research, 64(9), 1392–1404. https://doi.org/10.1002/acr.21695">https://doi.org/10.1002/acr.21695
Twyman, K. A., Saylor, C. F., Saia, D., Macias, M. M., Taylor, L. A., & Spratt, E. (2010). Bullying and ostracism experiences in children with special health care needs. Journal of Developmental and Behavioural Paediatrics, 31(1), 1–8. https://doi.org/10.1097/DBP.0b013e3181c828c8">https://doi.org/10.1097/DBP.0b013e3181c828c8
Willis, E., Miller, R., & Wyn, J. (2001). Gendered embodiment and survival for young people with cystic fibrosis. Social Science & Medicine, 53(9), 1163–1174. https://doi.org/10.1016/S0277-9536(00)00416-0">https://doi.org/10.1016/S0277-9536(00)00416-0
Dieses Werk steht unter der Lizenz Creative Commons Namensnennung - Nicht-kommerziell - Keine Bearbeitungen 4.0 International.
Copyright (c) 2018 Jan Chrastina, Tereza Klvaňová, Bianka Hudcová