{"?xml":{"@version":"1.0"},"edm:RDF":{"@xmlns:dc":"http://purl.org/dc/elements/1.1/","@xmlns:edm":"http://www.europeana.eu/schemas/edm/","@xmlns:wgs84_pos":"http://www.w3.org/2003/01/geo/wgs84_pos","@xmlns:foaf":"http://xmlns.com/foaf/0.1/","@xmlns:rdaGr2":"http://rdvocab.info/ElementsGr2","@xmlns:oai":"http://www.openarchives.org/OAI/2.0/","@xmlns:owl":"http://www.w3.org/2002/07/owl#","@xmlns:rdf":"http://www.w3.org/1999/02/22-rdf-syntax-ns#","@xmlns:ore":"http://www.openarchives.org/ore/terms/","@xmlns:skos":"http://www.w3.org/2004/02/skos/core#","@xmlns:dcterms":"http://purl.org/dc/terms/","edm:WebResource":[{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-F9QGH4FY/ddb09266-f058-4cce-be6e-89a951efd288/HTML","dcterms:extent":"55 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-F9QGH4FY/38756d32-e4ed-4d4c-a66e-82ae4c47ea8c/PDF","dcterms:extent":"416 KB"},{"@rdf:about":"http://www.dlib.si/stream/URN:NBN:SI:doc-F9QGH4FY/5d9ca03f-c940-4a0a-a61b-e0ed82b4dfc9/TEXT","dcterms:extent":"48 KB"}],"edm:TimeSpan":{"@rdf:about":"2008-2025","edm:begin":{"@xml:lang":"en","#text":"2008"},"edm:end":{"@xml:lang":"en","#text":"2025"}},"edm:ProvidedCHO":{"@rdf:about":"URN:NBN:SI:doc-F9QGH4FY","dcterms:isPartOf":[{"@rdf:resource":"https://www.dlib.si/details/URN:NBN:SI:spr-FQ9JBKO1"},{"@xml:lang":"sl","#text":"Rehabilitacija (Ljubljana)"}],"dcterms:issued":"2013","dc:creator":["Potočnik, Darja","Ravnjak, Tanja"],"dc:format":[{"@xml:lang":"sl","#text":"letnik:12"},{"@xml:lang":"sl","#text":"številka:2"},{"@xml:lang":"sl","#text":"str. 18-28"}],"dc:identifier":["ISSN:1580-9315","COBISSID:1810281","URN:URN:NBN:SI:doc-F9QGH4FY"],"dc:language":"sl","dc:publisher":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut Slovenije - Soča"},"dc:subject":[{"@xml:lang":"en","#text":"Adaptation, Psychological"},{"@xml:lang":"en","#text":"advanced illness"},{"@xml:lang":"en","#text":"coping"},{"@xml:lang":"sl","#text":"družina"},{"@xml:lang":"en","#text":"family"},{"@xml:lang":"en","#text":"family inclusion"},{"@xml:lang":"sl","#text":"kakovost življenja"},{"@xml:lang":"sl","#text":"napredovala bolezen"},{"@xml:lang":"sl","#text":"paliativna oskrba"},{"@xml:lang":"sl","#text":"prilagoditev"},{"@xml:lang":"en","#text":"Quality of life"},{"@xml:lang":"sl","#text":"rehabilitacija"},{"@xml:lang":"en","#text":"Rehabilitation"},{"@xml:lang":"sl","#text":"spoprijemanje"},{"@xml:lang":"en","#text":"standard of living"},{"@xml:lang":"sl","#text":"vključenost družine"},{"@xml:lang":"en","#text":"vocational rehabilitation"}],"dcterms:temporal":{"@rdf:resource":"2008-2025"},"dc:title":{"@xml:lang":"sl","#text":"Prilagoditev družine na napredovalo maligno bolezen| Adaptation of the family to an advanced malignant disease|"},"dc:description":[{"@xml:lang":"sl","#text":"Background: An incurable disease is understood as a non-normative event in a persons life; while the process of coping with it and consequential mourning are developmental processes.Confronting an advanced disease requires an adjustment not only of a patient but also of other family members. During the process of disease and mourning the familyis put before different developmental tasks which require various skills and behaviours from the family members. Knowledge of family functioning is therefore required for effective planning of clinical interventions. The treatment of physical, psychological, social and spiritual questions regarding the disease is handled by an interdisciplinary team composed of a doctor, a nurse, a social worker, a psychologist and others. With good understanding of the family dynamics, the medical team can choose appropriate interventions and provide quality care in the time of disease, mourning and rehabilitation. Our study addressed the factors that affect the familys adaptation to the advanced disease and the changes during family dynamics during the course of the disease. Methods: The research took part from October 2010 to July 2011 at the Institute of Oncology in Ljubljana as part of a pilot project of the Ministry of Health of the Republic of Slovenia. Eighty families of patients and their relatives were included; in total, 80 patients and 137 family members participated. For assessing family functioning and qualityof life, we used the Family Assessment Device (FAD),the Family Relationships Index (FRI) and the Functional Assessment of Chronic Illness Therapy Palliative Care Scale (FACIT-Pal). Linear discriminant analysis and multiplelinear regression were used to build multi-variable models. Results: The results showed that cohesion and conflict as dimensions of family functioning have a large effect on quality of life in advanced cancer. Family connectedness, understanding and support, as well as open expression of emotions, especially anger, predict higher quality of life. Conclusions: The results of our research have contributed to understanding structural and process changes in the family during the process of coping with life-threatening disease in a Slovenian sample of patients and their relatives. The research is also of practical value for planning further help/support for the patients and their relatives in order to achieve a holistic and systemic palliative treatment"},{"@xml:lang":"sl","#text":"Izhodišča: Neozdravljivo bolezen razumemo kot nenormativni dogodek v življenju posameznika, proces spoprijemanja z njo in posledično žalovanje pa sta razvojna procesa. Spoprijemanje z napredovalo boleznijo zahteva prilagoditev ne le bolnika, temveč tudi drugih družinskih članov. Družina je v času bolezni in žalovanja postavljena pred različne razvojne naloge, ki od družinskih članov zahtevajo različne spretnosti in vedenja, zato je za učinkovito načrtovanje kliničnih intervenc potrebno poznavanje funkcioniranja družine. Za obravnavo telesnih, psiholoških, socialnih in duhovnih vprašanj, povezanih z boleznijo, skrbi interdisciplinarni tim, ki ga sestavljajo zdravnik, medicinska sestra,socialni delavec, psiholog in drugi. Dobro poznavanje družinske dinamike vodi zdravstvene delavce k ustrezni izbiri intervencij in kakovostni oskrbi v času bolezni,žalovanja in rehabilitacije. Zanimali so nas dejavniki, ki vplivajo na prilagoditev družine na napredovalo bolezen in spremembe v družinski dinamiki v času bolezni. Metode: Raziskava je potekala od oktobra 2010 do julija 2011na Onkološkem inštitutu v Ljubljani v okviru pilotnega projekta Ministrstva za zdravje Republike Slovenije z naslovom Izvajanje celostne paliativne oskrbe v ljubljanski, gorenjski in pomurski regiji. Sodelovalo je 80 družin bolnikov s svojci; skupno število udeležencev je bilo 80 bolnikov in 137 svojcev. Za ocenjevanje družinskega funkcioniranja in kakovosti življenja smo uporabili vprašalnik za oceno družinskega funkcioniranja (FamilyAssessment Device, FAD), indeks družinskih odnosov(Family Relationships Index, FRI) in vprašalnik za oceno kakovosti življenja pri kroničnih boleznih v obdobju paliativne oskrbe (The Functional Assessment of ChronicIllness Therapy Palliative Care Scale, FACIT-Pal). Za izdelavo statističnih modelov z več spremenljivkami smo uporabili linearno diskriminantno analizo in multiplolinearno regresijo. Rezultati: Rezultati so pokazali, da na kakovost življenja bolnikov in svojcev najbolj vplivata kohezivnost in konflikt kot dimenziji družinskega funkcioniranja. To pomeni, da povezanost med družinskimi člani v smislu razumevanja in podpore ter možnost odprtega izražanja čustev napovedujeta višjo kakovost življenja. Zaključki: Dobljeni rezultati so pripomogli k razumevanju strukturnih in procesnih sprememb v družini v procesu spoprijemanja z življenjsko ogrožajočo boleznijo na slovenskem vzorcu bolnikov in svojcev. Uporabna vrednost raziskave je predvsem v tem, da omogoča načrtovanje nadaljnje pomoči bolniku in svojcem ter s tem kakovostnejšo celostno in sistemsko obravnavo"}],"edm:type":"TEXT","dc:type":[{"@xml:lang":"sl","#text":"znanstveno časopisje"},{"@xml:lang":"en","#text":"journals"},{"@rdf:resource":"http://www.wikidata.org/entity/Q361785"}]},"ore:Aggregation":{"@rdf:about":"http://www.dlib.si/?URN=URN:NBN:SI:doc-F9QGH4FY","edm:aggregatedCHO":{"@rdf:resource":"URN:NBN:SI:doc-F9QGH4FY"},"edm:isShownBy":{"@rdf:resource":"http://www.dlib.si/stream/URN:NBN:SI:doc-F9QGH4FY/38756d32-e4ed-4d4c-a66e-82ae4c47ea8c/PDF"},"edm:rights":{"@rdf:resource":"http://rightsstatements.org/vocab/InC/1.0/"},"edm:provider":"Slovenian National E-content Aggregator","edm:intermediateProvider":{"@xml:lang":"en","#text":"National and University Library of Slovenia"},"edm:dataProvider":{"@xml:lang":"sl","#text":"Univerzitetni rehabilitacijski inštitut RS – Soča"},"edm:object":{"@rdf:resource":"http://www.dlib.si/streamdb/URN:NBN:SI:doc-F9QGH4FY/maxi/edm"},"edm:isShownAt":{"@rdf:resource":"http://www.dlib.si/details/URN:NBN:SI:doc-F9QGH4FY"}}}}