Soočanje svojcev s Huntingtonovo boleznijo - Jančarič, Barbara (B. Jančarič, 2018)
Izhodišča: Huntingtonova bolezen je dedna, hitro napredujoča bolezen, pri kateri gre za propad možganskih celic. Bolezen je neozdravljiva, s pomočjo zdravil lahko le blažimo simptome, posledično bolezen napreduje počasneje. Pojavijo se težave z motoriko, govorom, požiranjem, kasneje pride do kognitivnih motenj. Značilen je tremor. V zadnji fazi bolezni so pacienti popolnoma odvisni od tuje pomoči. Raziskovalne metodologije in metode: Uporabili smo kvalitativno metodo raziskovanja, kot instrument smo uporabili intervju. Intervju smo izvedli s svojci dveh pacientov s Huntingtonovo boleznijo in nato ugotovitve medsebojno primerjali. Uporabili smo deskriptivno metodo dela. Rezultati: Ugotovili smo, da so bili svojci obeh družin ob napredovanju bolezni deležni drastičnih sprememb v njihovem vsakdanjiku, soočanje z boleznijo je bilo zelo težko, nihče jim ni nudil potrebne opore, ne prijatelji, kakor tudi organizacije. Sorodnika so namestili v zavod, saj sami več niso bili zmožni skrbeti zanj. So mnenja, da se premalo pozornosti posveča svojcem, da so premalo informirani, vsekakor so pogosteje izpostavljeni stresnim situacijam. V prvem intervjuju so se svojci pacienta A z boleznijo srečali prvič, med tem ko so svojci pacienta B bolezen že poznali. Diskusija in zaključek: S strokovno literaturo smo ugotovili, da svojci se pogosto ne znajo konstruktivno spoprijemati s težavami obolelih svojcev, bolezen jih je zelo pretresla in prizadela. V Sloveniji obstajajo organizacije za pomoč svojcem obolelih, v okviru katerih delujejo razne skupine. Na tematiko Huntingtonove bolezni obstaja tudi veliko literature. Introduction: Huntington's disease is a hereditary, rapidly progressive disease in which brain cells collapse. The disease is incurable, with the help of medicines we can only relieve the symptoms, and consequently the disease progresses slowly. Motoring problems occur, also problems with speech, swallowing and cognitive disorders occur later. A tremor is typical. In the last phase of the disease, patients are entirely dependent on foreign aid. Research methodology and methods: We used a qualitative research method, as an instrument we used the interview. The interview was conducted with the relatives of two patients with Huntington's disease, and then the findings were compared. We used a descriptive method of work. Results: We found that the relatives of both families experienced drastic changes in their everyday life, and it was very difficult to deal with the disease nobody offered them the necessary supports, no friends, as well as organizations. Relatives were placed in the institution, as they themselves were no longer able to care for him. They think that too little attention is given to family members, that they are under-informed, but they are more often exposed to stressful situations. In the first interview, the relatives of the patient A met with the disease for the first time, while the relatives of the patient B had already known the disease. Discussion and conclusion: With professional literature, we have found that relatives often do not know how to deal with the problems of their sick relatives in a constructive way, and the disease has shaken and affected them very much. There are organizations in Slovenia for helping the relatives of the diseased, in which different groups operate. There is also a lot of literature on the topic of Huntington's disease.