Individual experience of adolescents with juvenile idiopathic arthritis in the field of education

Uvod: Juvenilni idiopatski artritis je splošni izraz, ki opredeljuje kronične otroške artritične bolezni in je razvrščen v sedem podskupin. Omejitve, s katerimi se soočajo mladi s to boleznijo, vključujejo bolečino v mišicah in sklepih, zatekanje sklepov, utrujenost, slabo koncentracijo, nizko samozavest in samopodobo, oteženo participacijo, depresijo in socialno odtujenost. V obdobju mladostništva se poleg bioloških in psiholoških procesov pričnejo tudi pridobivati življenjske vloge, stopnjujeta se neodvisnost in pridobivanje odgovornosti. Šolanje in izobraževanje je ključnega pomena v mladosti in igra velik pomen v odraščanju osebe s spodbujanjem in razvojem samostojnosti, identitete, kognitivnih, emocionalnih, funkcionalnih in socialnih veščin posameznika. Namen: Namen diplomskega dela je bil dobiti vpogled v doživljanje posameznega mladostnika z juvenilnim idiopatskim artritisom na področju šolanja in izobraževanja. Zanimale so nas ovire, prilagoditve in omejitve, s katerimi se soočajo mlade osebe z JIA. Metode dela: V kvalitativni raziskavi smo izvedli 4 polstrukturirane intervjuje z osebami z juvenilnim idiopatskim artritisom. Z njihovim dovoljenjem smo intervjuje posneli, jih dobesedno prepisali in jih analizirali po metodi kvalitativne vsebinske analize. Rezultati: Težave pri intervjuvancih so se pojavljale na različnih stopnjah izobraževanja (osnovna šola, srednja šola, fakulteta), a so bile vse težave vezane na zagone bolezni. Glavne težave, s katerimi so se soočali, so bile bolečine v mišicah in sklepih, zatekanje v sklepih, nezmožnost opravljanja dnevnih aktivnosti. Vse to je doprineslo k utrujenosti, slabši koncentraciji in slabši mobilnosti. Posledično je bilo omejeno mladostnikovo delovanje v šoli. Deležni so bili različnih prilagoditev s strani šole in odnosov s strani sovrstnikov, učiteljev/profesorjev. Razprava in zaključek: V diplomskem delu smo ugotovili, da mladi z juvenilnim idiopatskim artritisom bolezen doživljajo vsak drugače, a hkrati enako. Glavni problemi, s katerimi se soočajo, so predvsem bolečina in posledično slabša koncentracija in utrujenost. Prav tako zagoni bolezni pomenijo izostanek od pouka/ šolskih obveznosti. Pomembne so tudi prilagoditve, ki so jih deležni/niso bili deležni s strani šolstva. Velik vpliv na doživljanje bolezni in vključevanje v izobraževanje ima socialno okolje in sprejemanje s strani sovrstnikov in izobraževalnega kadra. Podpora in razumevanje s strani sovrstnikov je ključnega pomena za uspeh in pozitivno izkušnjo v času šolanja.Introduction: Juvenile idiopathic arthritis is a general term used to describe chronic childhood arthritic diseases and is classified into seven subgroups. Limitations faced by young people with this disease include muscle and joint pain, joint swelling, fatigue, poor concentration, low self-esteem and self-esteem, difficulty in participating, depression, and social alienation. In adolescence, in addition to biological and psychological processes, they also begin to acquire life roles, increase independence, and acquire responsibility. Schooling and education are crucial in youth and play a major role in a person’s growing up by promoting and developing an individual’s independence, identity, cognitive, emotional, functional, and social skills. Purpose: The purpose of the work was to gain insight into the experience of an individual adolescent with juvenile idiopathic arthritis in the field of schooling and education. We will be interested in the barriers, adjustments, and limitations faced by young people with JIA. Methods: In this qualitative study, we conducted 4 semi-structured interviews with subjects with juvenile idiopathic arthritis. With their permission, we recorded the interviews, literally transcribed them, and analyzed them using the method of qualitative content analysis. Results: Problems with the interviewees accrued occurred at different levels of education (primary school, secondary school, and faculty). However, all problems were related to disease onset. The main problems they faced were pains in the muscles and joints, swelling in the joints, and inability to perform daily activities. All this contributed to fatigue, poor concentration, and poorer mobility. As a result, the adolescent\u27s activities at school were limited. They received various adjustments from the school and relationships with peers, teachers, and professors. Discussion and conclusion: In this work, we found that young people with juvenile idiopathic arthritis experience the disease differently but at the same time. The main problems they face are mainly pain and consequent poor concentration and fatigue. Outbreaks appear to be exacerbated during school hours. The adjustments they received/did not receive from education are also important. The social environment and acceptance by peers and educational staff have a great influence on the experience of illness and inclusion in education. Support and understanding from peers are key to success and a positive experience during school