20.500.12556/RUL-186128 Partnerski odnos med staršema v družini s kronično bolnim otrokom diplomsko delo The Partner Relationship in Families of Children with a Chronic Illness V diplomskem delu sem se osredotočila na partnerski odnos staršev otrok s kronično boleznijo, ki je v obstoječi strokovni in znanstveni literaturi pogosto zapostavljena tema. S pomočjo raziskave sem želela razumeti, kako otrokova bolezen preoblikuje partnerski odnos z vidika komunikacije, konfliktov, čustvene in spolne intimnosti ter doživljanja partnerske in starševske vloge. Zanimala me je tudi dinamika spreminjanja odnosa tekom posameznih faz kronične bolezni in katere varovalne dejavnike partnerji prepoznavajo kot ključne pri ohranjanju njunega odnosa. Raziskava, ki sem jo izvedla, je kvalitativna. Za zbiranje podatkov sem uporabila metodo spraševanja, natančneje delno standardiziran intervju, pri čemer sem si pomagala z vnaprej pripravljenimi smernicami za intervju. V raziskavo je bilo vključenih devet staršev, katerih otroci imajo diagnozo različnih kroničnih bolezni, med katerimi so rak, cerebralna paraliza, hemofilija, Noonanov sindrom, epilepsija, ADHD, alergije in atopijski dermatitis. Zbrane podatke sem obdelala z metodo kvalitativne analize. Ugotovitve kažejo, da je to, kako se bo z diagnozo partnerski odnos spremenil, povezano tako z dejavniki, ki so partnerskemu odnosu lastni že pred boleznijo, in s tistimi, ki se oblikujejo v odzivu nanjo. Pri večini sogovornikov je bolezen prinesla poglobitev čustvene intimnosti, okrepitev zavezništva in razvoj konstruktivnejših komunikacijskih vzorcev, medtem ko je pri nekaterih pospeševala že obstoječe ranljivosti in vodila v postopno odtujevanje. Spolna intimnost je bila zaradi psihične in fizične obremenjenosti s skrbjo za otroka, utrujenosti in fizične ločenosti med zdravljenjem pri večini sogovornikov pomaknjena v ozadje. Dinamika partnerskega odnosa se je med sodelujočimi spreminjala tudi med različnimi fazami bolezni. Obdobje čakanja na postavitev diagnoze, prejem diagnoze in začetno zdravljenje so bili pri večini zaznamovani z izrazito medsebojno oporo, pri čemer se je obdobje po zaključenem zdravljenju za številne izkazalo kot najranljivejše, saj so na plano prišle napetosti, ki so jih zaradi intenzivnosti v začetnih fazah bolezni zavestno ali nezavedno odlagali. Starševska vloga je po diagnozi pri vseh udeležencih postala intenzivnejša tako v praktičnem kot čustvenem smislu. Staši so prevzeli vlogo koordinatorja otrokove zdravstvene oskrbe, zagovornika otroka in prevzeli odgovornost odločanja glede medicinskih situacij. Starše so spremljali občutki krivde, strahu, odgovornosti, tesnobnosti. Partnersko vlogo so sogovorniki v primerjavi s starševsko bistveno težje ubesedili in o njej razmišljali, saj je pogosto niso dojemali kot ločene kategorije njihovih identitet, ampak kot del starševske vloge. Kot najpomembnejši varovalni dejavnik partnerskega odnosa so sogovorniki izpostavljali grajenje trdnih temeljev odnosa pred boleznijo, poleg tega pa povezanost ohranjajo z odprto komunikacijo, s skupnim časom in z majhnimi gestami pozornosti, pri čemer pomembno podporo predstavlja tudi ožje in širše socialno okolje. This diploma thesis focuses on the partner relationship of parents raising a child with a chronic illness, a topic that remains relatively overlooked in both professional and academic literature. The study sought to explore how a child’s illness reshapes the partner relationship in terms of communication, conflict, emotional and sexual intimacy, and the experience of both partner and parental roles. It also examined how the relationship evolves throughout the different stages of the illness and which protective factors parents identify as essential for maintaining their relationship. The research adopted a qualitative approach. Data were collected through semi-structured interviews based on a set of pre-prepared interview guidelines. The study included nine parents whose children had been diagnosed with various chronic conditions, including cancer, cerebral palsy, haemophilia, Noonan syndrome, epilepsy, ADHD, allergies, and atopic dermatitis. The data were analysed using qualitative content analysis. The findings indicate that the way a partner relationship changes following a diagnosis is influenced both by characteristics already present within the relationship before the illness and by factors that emerge in response to it. For most participants, the child’s illness led to greater emotional intimacy, a stronger sense of partnership, and the development of more constructive communication patterns. For some, however, it intensified existing vulnerabilities and contributed to a gradual emotional distancing. Owing to the psychological and physical demands of caregiving, fatigue, and periods of physical separation during treatment, sexual intimacy was often relegated to a secondary role. The dynamics of partner relationships also varied across different stages of the illness. The period of waiting for a diagnosis, receiving the diagnosis, and the initial phase of treatment were generally characterised by strong mutual support. In contrast, the period following the completion of treatment emerged as the most vulnerable stage for many participants, as tensions that had been consciously or unconsciously set aside during the more intensive phases of the illness began to surface. Following the diagnosis, the parental role became more demanding for all participants, both practically and emotionally. Parents assumed responsibilities as coordinators of their child’s healthcare, advocates for their child, and decision-makers in medical situations. Their experiences were often accompanied by feelings of guilt, fear, responsibility, and anxiety. Compared with their parental role, participants found it considerably more difficult to define and reflect upon their partner role. Many did not perceive it as a distinct aspect of their identity but rather as an integral part of being a parent. The most important protective factor identified by participants was the existence of a strong relationship foundation established before the child’s illness. In addition, relationship quality was maintained through open communication, shared time together, and small acts of care and attention, while support from both close family members and the wider social network also played a significant role. kronična bolezen otroka partnerski odnos staršev dinamika partnerskega odnosa skozi faze bolezni starševske in partnerske vloge varovalni dejavniki child’s chronic illness parents’ partner relationship dynamics of the partner relationship across the stages of illness parental and partner roles protective factors true false false [S. Flandja] Slovenski jezik Angleški jezik Diplomsko delo/naloga 2026-08-27 09:05:01 2026-08-27 09:05:09 2026-11-03 13:00:55 0000-00-00 00:00:00 2026 0 Ljubljana 0 Ljubljana 170 str. 0000-00-00 NiDoloceno NiDoloceno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 316.362.1:616-039.33 57683 303693571 20721.pdf 20721.pdf 1 E0D97213D8FFD6B89FC14A9E9ACA6BD7 5bac85eb1b36ea43f2979d91e4dc4af5da2217a799628889c33988f2e0b5d4ca 3aa217ca-a1e5-11f1-9b0d-0050569b8976 https://repozitorij.uni-lj.si/Dokument.php?lang=slv&id=245217 Fakulteta za socialno delo 0 0 0