Sadness, anger and fear in parents of children with chronic illness

Avtorica je v magistrskem delu raziskovala, v povezavi s čim starši otrok s kronično boleznijo doživljajo občutje žalosti, jeze in strahu. V teoretičnem delu opredeli pojem kronična bolezen, otrokovo bolezen opredeli kot travmatični dogodek ter spregovori o odzivih staršev. V nadaljevanju je opredelila pojem družina, orisala dinamiko odnosov, predstavila čustveno doživljanje staršev otrok s kronično boleznijo ter navedla relacijsko družinsko terapijo kot obliko psihosocialne pomoči družinam. V empiričnem delu je predstavljena raziskava, v kateri je sodelovalo 12 intervjuvancev, en oče in 11 mater. Udeleženci so bili stari od 31 do 43 let. Avtorica je uporabila vnaprej pripravljen polstrukturiran intervju, ki je zajemal sledeča področja: izkušnja diagnostičnega procesa, starševstvo, partnerski in družinski odnosi, odnosi z zdravstveno stroko, podpora staršem, negotova prihodnost, poslabšanje bolezni in oskrba otroka. Rezultati so pokazali, da starši otrok s kronično boleznijo, žalost, jezo in strah doživljajo v povezavi z diagnostičnim postopkom, načinom spoprijemanja z boleznijo, z negotovo prihodnostjo, v odnosih s člani družine, v odnosih z zdravstvenim osebjem ter ob spoprijemanju z raznimi ovirami, življenjskimi izzivi ter prejemanju pomoči. Izkazalo se je, da je žalost najpogosteje prisotno občutje, čemur sledi občutje strahu in šele nato občutje jeze. Otrokova kronična bolezen vpliva na otroka ter celoten družinski sistem, znotraj katerega pride do reorganizacije vlog in sprememb. Starši in celotna družina se morajo sprijazniti z boleznijo ter odkriti in razviti ustrezne strategije spoprijemanja z otrokovo boleznijo, kar je dolgotrajen proces, ki zahteva mnoge prilagoditve in odrekanja na različnih področjih. Otrokova kronična bolezen lahko na družino vpliva negativno ali pozitivno in pri starših poleg žalosti, jeze in strahu, prebuja paleto najrazličnejših različno intenzivnih občutij, ki posledično vplivajo na nadaljnje spoprijemanje z boleznijo.This thesis researches, when and in connection with what, parents of the chronically diseased children experience sadness, anger, and fear. The theoretical part of the thesis describes the definition of the chronic disease, defines children’s condition as a traumatic event and addresses the parents’ reactions. What is more, it defines the term family, describes the dynamic of relations, depicts emotional experience of parents of diseased children, and suggests relation family therapy as a form of psychosocial help for the families. The empirical part presents the research with 12 interviewees, one father and eleven mothers. The participants are aged from 31 to 43. For the purposes of the interviews a semi-structured interview was used and it covers the following areas: the experience of the diagnostic process, parenthood, family and partnership relations, relations with the medical profession, parents’ support, insecure future, deterioration of the disease, and care of their children. The results show that parents experience sadness, anger, and fear connected with the diagnosis procedure, ways of dealing with the disease, insecure future, family relations, relations with the medical profession, dealing with different obstacles, life challenges and accepting help. The results show that the most common feeling is sadness, followed by fear and then anger. Child’s disease affects the child together with the whole family, and therefore leads to reorganisation of family roles and many changes. Parents, together with the whole family, have to accept the disease and discover and develop different strategies of coping with the disease and the situation as it is a long term process which demands adjustments and sacrificing in different areas. Child’s chronic disease can negatively or positively affect the family. Furthermore, it awakens various intense feelings in the parents alongside with sadness, anger, and fear, and that affects further dealings with the disease