{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,8]],"date-time":"2026-04-08T22:28:33Z","timestamp":1775687313090,"version":"3.50.1"},"reference-count":0,"publisher":"Komitet Redakcyjno - Wydawniczy Polskiego Towarzystwa Psychiatrycznego","issue":"4","license":[{"start":{"date-parts":[[2021,8,31]],"date-time":"2021-08-31T00:00:00Z","timestamp":1630368000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2021,8,31]],"date-time":"2021-08-31T00:00:00Z","timestamp":1630368000000},"content-version":"am","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2021,8,31]],"date-time":"2021-08-31T00:00:00Z","timestamp":1630368000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Psychiatr Pol"],"published-print":{"date-parts":[[2021,8,31]]},"abstract":"<jats:sec><jats:title>Cel pracy<\/jats:title><jats:p>Celem badania by\u0142a analiza funkcjonowania rodziny w percpecji osoby z zespo\u0142em Marfana oraz poszukiwanie zale\u017cno\u015bci mi\u0119dzy cechami systemu a og\u00f3ln\u0105 jako\u015bci\u0105 \u017cycia chorych.<\/jats:p><\/jats:sec><jats:sec><jats:title>Metoda<\/jats:title><jats:p>W badaniu uczesniczy\u0142y 33 osoby z zespo\u0142em Marfana oraz 33 osoby bez diagnozy choroby przewlek\u0142ej. Wykorzystano Skale Oceny Rodziny \u2013 polsk\u0105 adaptacj\u0119 FACES-IV D. H. Olsona oraz SWLS (Satisfaction with Life Scale) autorstwa Dienera, Emmonsa, Larsona i Griffina.<\/jats:p><\/jats:sec><jats:sec><jats:title>Wyniki<\/jats:title><jats:p>Osoby z zespo\u0142em Marfana postrzegaj\u0105 swoje rodziny jako znacznie mniej sp\u00f3jne i znacznie bardziej niezwi\u0105zane od os\u00f3b bez diagnozy przewlek\u0142ej choroby. System rodzinny os\u00f3b z zespo\u0142em Marfana charakteryzuje si\u0119 niskimi wynikami w zakresie sp\u00f3jno\u015bci i elastyczno\u015bci oraz wysokimi wynikami w pozosta\u0142ych czterech skalach, co wskazuje na profil rodziny podobny do \"niezr\u00f3wnowa\u017conego\" systemu. Satysfakcja z \u017cycia os\u00f3b z zespo\u0142em Marfana korelowa\u0142a pozytywnie ze Sp\u00f3jno\u015bci\u0105, Elastyczno\u015bci\u0105 i Satysfakcj\u0105 z \u017bycia Rodzinnego jako cechami postrzeganego przez nich system rodzinnego.<\/jats:p><\/jats:sec><jats:sec><jats:title>Wnioski<\/jats:title><jats:p>Uzyskane wyniki potwierdzaj\u0105 znaczenie wspierania rodziny os\u00f3b z zespo\u0142em Marfana jako oraz udzielania im specjalistycznej pomocy w radzeniu sobie z obci\u0105\u017ceniem emocjonalnym zwi\u0105zanym ze zdrowiem pacjenta.<\/jats:p><\/jats:sec>","DOI":"10.12740\/pp\/onlinefirst\/114838","type":"journal-article","created":{"date-parts":[[2020,12,30]],"date-time":"2020-12-30T16:34:32Z","timestamp":1609346072000},"page":"815-834","source":"Crossref","is-referenced-by-count":3,"title":["Families of people with Marfan syndrome. The relationship between the functioning of the family system and the life quality of the affected persons"],"prefix":"10.12740","volume":"55","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9806-6339","authenticated-orcid":false,"given":"Aleksandra","family":"Lewandowska- Walter","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Agnieszka","family":"Trawicka","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7610-0345","authenticated-orcid":false,"given":"Marta","family":"Bogdanowicz","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1581-3296","authenticated-orcid":false,"given":"Robert","family":"Sabiniewicz","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1238-4369","authenticated-orcid":false,"given":"Lidia","family":"Wo\u017aniak-Mielczarek","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"5036","published-online":{"date-parts":[[2021,8,31]]},"container-title":["Psychiatria Polska"],"original-title":["Rodzina osoby z zespo\u0142em Marfana. Zwi\u0105zki funkcjonowania systemu rodzinnego z jako\u015bci\u0105 \u017cycia osoby chorej"],"link":[{"URL":"https:\/\/www.psychiatriapolska.pl\/pdf-114838-81751","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.psychiatriapolska.pl\/pdf-114838-81751","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,10,18]],"date-time":"2022-10-18T06:49:23Z","timestamp":1666075763000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.psychiatriapolska.pl\/Families-of-people-with-Marfan-syndrome-The-relationship-between-the-functioning,114838,0,2.html"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,8,31]]},"references-count":0,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2021]]}},"alternative-id":["114838"],"URL":"https:\/\/doi.org\/10.12740\/pp\/onlinefirst\/114838","relation":{},"ISSN":["0033-2674","2391-5854"],"issn-type":[{"value":"0033-2674","type":"print"},{"value":"2391-5854","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,8,31]]}}}