The life of young people with a chronic inflammatory bowel disease

Magistrsko delo obravnava mlade odrasle s kronično vnetno črevesno boleznijo. Kronične bolezni so danes v porastu, zato tudi kronična vnetna črevesna bolezen ni izjema. Za razliko od drugih kroničnih bolezni (npr. bolezni obtočil, bolezni skeleta) pa se kronična vnetna črevesna bolezen najpogosteje pojavi pri mladostnikih in mladih odraslih. Prehod mladih v obdobje odraslosti je težaven, vedno več mladih pa se danes spopada tudi s kroničnimi boleznimi. Ob tem je pomembno dejstvo, da se mladi na prehodu v odraslost soočajo z zahtevnimi razvojnimi nalogami, katerih doseganje lahko bolezen ključno zameji. Teoretični del obravnava razvojno obdobje prehoda v odraslost, dotaknem se različnih področij vsakodnevnega življenja (zaposlovanja, izobraževanja, zdravja, odnosov s partnerjem in družino). Pozornost namenim tudi pregledu podpore obolelim mladim s strani zdravstva in nevladnih organizacij (Društva KVČB). V empiričnemu delu obravnavam glavno raziskovalno vprašanje magistrskega dela. To je spoznavanje, kako mladi doživljajo kronično vnetno črevesno bolezen, kako se z njo soočajo in kje dobivajo podporo pri soočanju z boleznijo. Moje glavno spoznanje je, da se mladi z boleznijo različno uspešno soočajo. Nekatere obolele bolezen pri doseganju izobraževalnih, zaposlovalnih, partnerskih ciljev znatno omejuje, medtem ko nekateri oboleli skorajda ne zaznavajo omejitev. Razlog tiči v poteku in aktivnosti bolezni. Največ skupnih točk pri obolelih je zaznati v poteku in omejitvah vsakdana zaradi bolezni. Obolele spremlja mnogo strahov, ki so pogojeni z njihovim potekom bolezni. Nekaj sodelujočih v raziskavi je izrazilo tudi strahove glede načrtovanja življenjske prihodnosti. Bolezen ključno posega tudi v partnersko življenje obolelih in načrtovanje družine. Rezultati kažejo tudi spremembe v samopodobi in navezovanju stikov s sovrstniki. Spoznala sem, da se mladi oboleli ukvarjajo s težavami, s katerimi se soočajo tudi zdravi mladostniki (npr. z izzivi zaposlovanja, izzivi izobraževanja), poleg tega pa obolele spremljajo še izzivi, ki jih doprinese bolezen, in so tako dvojno obremenjeni. Podporo obolelim pri spoprijemanju z boleznijo nudijo v največji meri družina ter nevladne organizacije, kjer je vodilno Društvo KVČB. Magistrsko delo se zaključi s sklepom, v katerem je predstavljen pregled raziskovalnih vprašanj in predlogov za nadaljnje raziskovanje in načrtovanje pomoči specifični skupini, ki sem jo v svojem delu obravnavala.The master thesis deals with young adults with chronic inflammatory bowel disease. Nowadays, chronic diseases are on the rise, and chronic inflammatory bowel disease is no exception. Unlike other chronic diseases (circulatory diseases, skeletal diseases), a chronic inflammatory bowel disease most commonly occurs in adolescents and young adults. The transition of young people to adulthood is difficult in itself, and more and more young people today face chronic diseases. Young people during the transition to adulthood, face difficult development challenges, which due to their disease can be difficult to overcome. The theoretical part deals with the period of emerging adulthood and various other areas of everyday life (employment, education, health, family and partner relationship). We also review how health and non-governmental organizations—the Društvo KVČB (in English: Association for Chronic Inflammatory Bowel Disease)—provide support to sick young people. The empirical part deals with the main research question of this master\u27s thesis, which is to find out how young people experience and face their chronic inflammatory bowel disease and where do they find support in dealing with this disease. My research concludes that young people have different results in dealing with this disease. Some young patients find it very difficult achieving their educational, employment and partnership goals, while others do not recognize having any problems. This depends on the progression and the activity of the disease. What all have in common is that the disease affects their everyday lives. Young people with chronic inflammatory bowel disease express fears that are conditioned by their progression of the disease. Some participants in the survey also expressed fears about their future. The disease affects their intimate relationships and family planning. The results also show changes in self-esteem and difficulties in establishing social contacts with their peers. I learned that in addition to the challenges that all young people face—e. g. employment and education—, sick young people also have to deal with challenges that arise from the disease, which present an additional burden to them. Many young people with chronic inflammatory bowel disease receive most of their support from family and non-governmental organizations, such as the association Društvo KVČB. Lastly, I conclude with a review of our research questions. I provide idea