Academic Scientific JournalsParents of a child with a rare disease as stakeholders of his education process
Keywords:
rare disease, family of a child with a disability, inclusive education, pedagogical experiment, stakeholders managementAbstract
Parents of a child with a rare disease as stakeholders of his education process. The article deals with the education of a child living with a rare disease and the importance of the role his parents play in the process. Due to the tasks they undertake and insufficient system support, they have become their child's advocates and became important stakeholders in the process. The authors of the article make the review of research on the education of a child with a rare disease in the area of systemic possibilities and the involvement of parents in adapting the education process to the child's abilities and needs. They also describe a pedagogical experiment concerning a boy with metachromatic leukodystrophy, which is a merger of individual and inclusive education. The summary of the article’s considerations are the possible implications for innovative solutions for special education.
Downloads
References
Adama E.A., Arabiat D., Foster M.J., Afrifa-Yamoah E., Runions K., Vithiatharan R., Lin A. (2021), The psychosocial impact of rare diseases among children and adolescents attending mainstream schools in Western Australia, International Journal Of Inclusive Education.
Balli D. (2016), Importance of Parental Involvement to Meet the Special Needs of their Children with Disabilities in Regular Schools, Academic Journal of Interdisciplinary Studies, 5 (1).
Cohen J.S., Biesecker B.B. (2010), Quality of life in rare genetic conditions: a systematic review of the literature, American Journal of Medical Genetics, 152A: 1136–1156.
de Oliveira Lima C.L., Kuusisto E. (2020) Parental Engagement in Children’s Learning: A Holistic Approach to Teacher-Parents’ Partnerships [w:] Pedagogy in Basic and Higher Education – Current Developments and Challenges, K. Tirri, A. Toom (eds.), IntechOpen, Londyn.
Doroszuk J. (2018), Rodzina dziecka z niepełnosprawnością w badaniu netnograficznym: rekonstrukcja problemowa badań Haliny Borzyszkowskiej, Wydawnictwo Naukowe Katedra, Gdańsk.
Doroszuk J., Tersa K. (2021), Eksperyment pedagogiczny jako sposób uelastycznienia dostępnych form kształcenia dziecka ze specjalnymi potrzebami edukacyjnymi – studium przypadku, Niepełnosprawność, Dyskursy Pedagogiki Specjalnej, Wydawnictwo Uniwersytetu Gdańskiego, 43: 77–97.
Eisengart J.B., Esler A.N., Mathew Ellinwood M., Hudock R.L., King K.E., Klein T.L., Lee Ch., Morton J., Stephens K., Ziegler R., O'Neill C. (2021), Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses, Molecular Genetics and Metabolism, 134 (1–2): 68–76.
EMA (2020), https://www.ema.europa.eu/en/medicines/human/EPAR/libmeldy [dostęp: 15.04.2022].
EURORDIS – Rare Diseases Europe (2017), Juggling care and daily life: the balancing act of the rare disease community. Rare Barometer Survey.
Fishman C.E., Nickerson A.B. (2015), Motivations for Involvement: A Preliminary Investigation of Parents of Students with Disabilities, Journal of Child and Family Studies, 24 (2).
Fundacja Bohatera Borysa (2019), Statut Fundacji Bohatera Borysa https://fundacjabb.pl/ ?page_id=38 [dostęp: 15.04.2022].
Gaintza Z., Ozerinjauregi N., Aróstegui I. (2018), Educational inclusion of students with rare diseases: Schooling students with spina bifida, British Journal of Learning Disabilities, 1–8.
Goodall J., Montgomery C. (2014), Parental involvement to parental engagement: a continuum, Educational Review, 66, 4: 399–410.
Gunne E., McGarvey C., Hamilton K., Treacy E., Lambert D.M., Lynch S.A. (2020), A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland, Orphanet Journal of Rare Diseases, 15: 311.
Hadjiyiannakou A., Ioannou C., Tzoigkouros C. (2007), Parents of Disabled Chidren: The Educational System and the Everyday Challenges, International Journal about Parents in Education, 1 (0).
Hinton D., Kirk S. (2015), Teachers’ perspectives of supporting pupils with long-term health conditions in mainstream schools: a narrative review of the literature, Health and Social Care in the Community, 23 (2): 107–120.
Hofstede G. (2000), Kultury i organizacje: zaprogramowanie umysłu, Polskie Wydawnictwo Ekonomiczne, Warszawa.
HSR (2020), https://research.hsr.it/en/news/ec-approval-for-libmeldy.html [dostęp: 15.04.2022].
Kamyk-Wawryszuk A. (2018), Potrzeby rodziny dziecka z chorobą rzadką i niepełnosprawnością intelektualną a możliwości wsparcia przez społeczność lokalną, Dyskursy Pedagogiki Specjalnej, Wydawnictwo Uniwersytetu Gdańskiego, 31: 72–86.
Karaś D. (2016), Bohater Borys i śmiertelny wróg. Niezwykła historia chorego chłopca, https:// trojmiasto.wyborcza.pl/trojmiasto/7,35612,20605500,bohater-borys-i-smiertelny-wrogniezwykla-historia-chorego.html [dostęp: 15.04.2022].
Klajmon-Lech U. (2018a), Doświadczenia stresu i wypalenia sił oraz sposoby radzenia sobie z nimi z perspektywy matek dzieci z rzadką chorobą genetyczną, Problemy Edukacji, Rehabilitacji i Socjalizacji Osób Niepełnosprawnych, 27 (2): 143–156.
Klajmon-Lech U. (2018b), Szkoła jako przestrzeń współpracy i otwartości wobec dziecka z rzadką chorobą genetyczną, Kultura i Edukacja, 3: 159–170.
Koźmiński A.K., Jemielniak D., Latusek D. (2009), Współczesne spojrzenie na kulturę organizacji, e-mentor, 3: 4–14.
Lee F.L.M., Yeung A.S., Tracey D., Barker, K. (2015), Inclusion of Children With Special Needs in Early Childhood Education: What Teacher Characteristics Matter, Topics in Early Childhood Special Education, 35 (2): 79–88.
Lightfoot J., Wright S, Sloper P. (1999), Supporting pupils in mainstream school with an illness or disability: young people's views, Child Care Health Dev, 25 (4): 267–283.
Logsdon A (2021), The Important Role of Parents in Special Education, https://www.verywellfamily.com/parental-importance-special-education-2162701 [dostęp: 15.04.2022].
Medel M. (2017), Pedagogika miejsca wspólnego. Miasto i szkoła, Wydawnictwo Naukowe Katedra, Gdańsk. Ministerstwo Zdrowia (2017), Choroby rzadkie, https://www.gov.pl/web/zdrowie/chorobyrzadkie [dostęp: 12.04.2022].
Molster C., Urwin D., Di Pietro L., Fookes M., Petrie D., van der Laan S., Dawkins H. (2016), Survey of healthcare experiences of Australian adults living with rare diseases, Orphanet Journal of Rare Diseases, 11: 30.
Naumiuk A. (2018), Rola pedagogiki nastawionej na inkluzję w warunkach demokracji [w:] Inkluzja w perspektywie pedagogiki specjalnej i pedagogiki społecznej. Pytania, konteksty, dyskusje, G. Dryżałowska, M. Kuleta-Hulboj, A. Naumiuk, M. Skura, A.M. Steinhagen, Wydawnictwa Uniwersytetu Warszawskiego, Warszawa.
Navarrete-Opazo A.A., Singh M., Tisdale A., Cutillo Ch.M., Garrison S.R. (2021), Can you hear us now? The impact of health-care utilization by rare disease patients in the United States, Genetics in Medicine, 23: 2194–2201.
Nishii L.H. (2013), The Benefits Of Climate For Inclusion For Gender-Diverse Groups, Academy of Management Journal, 56 (6): 1754–1774.
ONZ (2021), Addressing the challenges of persons living with a rare disease and their families. Resolution adopted by the General Assembly on 16 December 2021, https:// www.rarediseasesinternational.org/wp-content/uploads/2022/01/Final-UN-Text-UNResolution-on-Persons-Living-with-a-Rare-Disease-and-their-Families.pdf [dostęp: 12.04.2022].
Orphanet, Metachromatic Leukodystrophy, https://www.orpha.net/consor/cgi-bin/OC_ Exp.php?Expert=512&lng=EN [dostęp: 15.04.2022].
Paz-Lourido B., Negre F., de la Iglesia B., Verge, S. (2020), Influence of schooling on the health-related quality of life of children with rare diseases, Health and Quality of Life Outcomes, 18–109.
Pelentsov L.J., Laws T.A., Esterman A.J. (2015), The supportive care needs of parents caring for a child with a rare disease: A scoping review, Disability and Health Journal, 8: 475–491.
Pless N.M., Maak T. (2004), Building an Inclusive Diversity Culture: Principles, Processes and Practice, Journal of Business Ethics, 54: 129–147.
Roberson Q.M. (2004), Disentangling the Meanings of Diversity and Inclusion, Working Papers Series of Centre for Advanced Human Resource Studies, WP 04-05.
Rosselló M.R., Verger S., Francisca N., Berta P. (2018). Interdisciplinary care for children with rare diseases, Nursing & Care Open Access Journal, 5 (1).
Schein E.H. (1986), Organizational Culture and Leadership. A Dynamic View, San Francisco, CA: Jossey-Bass.
Skweres-Kuchta M. (2019), Choroby rzadkie wśród dzieci – zarządzanie systemem z perspektywy rodziny pacjenta [w:] Zdrowie i styl życia. Wyzwania ekonomiczne i społeczne, W. Nowak, K. Szalonka (red.), Wrocław.
Smith C. (2020), Challenges and Opportunities for Teaching Students with Disabilities During the COVID-19 Pandemic, International Journal of Multidisciplinary Perspectives in Higher Education, 5 (1): 167–173.
Stojanowski J. (2019), Niepełnosprawni – pełnosprawni w społeczeństwie. Konferencja Niepełnosprawni wśród nas. Seminarium towarzyszące jubileuszowej wystawie prac Fundacji „Sprawni inaczej”, Narodowe Muzeum Morskie w Gdańsku, Gdańsk.
Tisdale A., Cutillo C.M., Nathan R., Russo P., Laraway B., Haendel M., Nowak D., Hasche C., Chan C.H., Griese E., Dawkins H., Shukla O., Pearce D.A., Rutter J.L., Pariser A.R. (2021), The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems Orphanet Journal or Rare Diseases, 16 (1): 429.
UNICEF (2022), Seen, Counted, Included: Using data to shed light on the well-being of children with disabilities, https://data.unicef.org/resources/children-with-disabilities-report-2021/ [dostęp: 13.04.2022].
van Rappard D.F., Boelens J.J., Wolf N.I., (2015), Metachromatic leukodystrophy: Disease spectrum and approaches for treatment, Best Practice & Research Clinical Endocrinology & Metabolism, 29 (2): 261–273.
Verger S., Negre F., Rosselló M.R., Paz-Lourido B. (2020), Inclusion and equity in educational services for children with rare diseases: Challenges and opportunities, Children and Youth Services Review, 119: 105–518.
Vizer-Karni N., Reiter S. (2014), Organizational conditions and school culture fostering inclusive education – findings of research among Israeli Arab teachers, International Journal of Developmental Disabilities, 60, 4: 205–214.
Wakap S.N., Lambert D.M., Olry A., Rodwell Ch., Gueydan Ch., Lanneau V., Murphy D., Le Cam Y., Rath A. (2020), Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database, European Journal of Human Genetics, 28: 165–173.
WHO (2021), https://www.who.int/news-room/fact-sheets/detail/disability-and-health [dostęp: 12.04.2022].
Wiśniewska M.Z (2021), Kultura organizacyjna oraz kultury wzmacniające doskonalenie podmiotów opieki zdrowotnej, Instytut Naukowo-Wydawniczy „Spatium”, Radom.
Wiśniewska M.Z., Wyrwa J. (2022), Bezpieczeństwo żywności i żywnościowe w okresie pandemii. Ujęcie interdyscyplinarne, Polskie Towarzystwo Ekonomiczne, Zielona Góra.
Zacharuk T. (2011), Edukacja włączająca szansą dla wszystkich uczniów, Meritum. Mazowiecki Kwartalnik Edukacyjny, 1 (20).
Zurynski Y., Deverell M., Dalkeith T., Johnson S., Christodoulou J., Leonard H., Elliott E.J., APSU Rare Diseases Impacts on Families Study group (2017), Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays, Orphanet Journal of Rare Diseases, 12: 68.
