Title Doživljaj kvalitete života u obitelji djece i mladih oboljelih od hemofilije Title (english) Experience quality of life in families with children and young people with hemophilia Author Marija Petrović Mentor Vanja Slijepčević Saftić (mentor)Committee member Mirjana Turkalj (predsjednik povjerenstva)Committee member Jasna Čerkez Habek (član povjerenstva)Committee member Vanja Slijepčević Saftić (član povjerenstva)Granter Catholic University of Croatia Defense date and country 2022-05-06, Croatia Scientific / art field, BIOMEDICINE AND HEALTHCARE Abstract Cilj: Ispitati kvalitetu života djece i mladih oboljelih od hemofilije i njihovih obitelji, te vidjeti razlikuje li se njihova procjena kvalitete života u odnosu na procjenu kvalitete života njihovih roditelja.
Materijali i metode: Istraživanje je provedeno anonimnom anketom djece i mladih, koji su praćeni nakon postavljanja dijagnoze, te njihovih roditelja, pri Referentnom centru za hematologiju, onkologiju i transplantaciju krvotvornih matičnih stanica u Klinici za pedijatriju, Kliničkog bolničkog centra Zagreb. Kvalitetu života ispitanici su procjenjivali koristeći standardiziranu verziju upitnika procjene kvalitete života „The Quality of life assessment instrument for children and adolescents with haemophilia“ (Haemo-Qol, 2002.).
Rezultati: U istraživanju je sudjelovalo 30 dječaka oboljelih od hemofilije i 30 njihovih roditelja. Djeca procjenjuju da hemofilija u manjoj mjeri utječe na njihovu kvalitetu života u procjeni općeg zdravlja. Rezultati su pokazali da se roditelji i djeca značajno razlikuju samo u procjeni utjecaja hemofilije na emocionalno stanje, u smislu da roditelji procjenjuju da hemofilija u većoj mjeri utječe na emocionalno stanje djece nego što to procjenjuju djeca (p=.006). Djeca koja imaju češća krvarenja utjecaj hemofilije na zdravlje procjenjuju većim. Rezultati su pokazali da postoji statistički značajna povezanost između učestalosti krvarenja i procjene utjecaja hemofilije na tjelesno zdravlje (p<0,01), emocionalno stanje (p<0,05) i sliku o sebi (p<0,05). Isto tako, djeca koja imaju češća krvarenja procjenjuju da hemofilija ima veći utjecaj na funkcioniranje u školi i sportskim aktivnostima (p<0,05).
Zaključak: Roditelji djece oboljele od hemofilije procjenjuju kvalitetu života njihove djece nižom u usporedbi sa samoprocjenama djece. Učestalost krvarenja narušava kvalitetu života djece s hemofilijom u području zdravlja, emocionalnog stanja, slike o sebi i funkcioniranjem u školi i sportskim aktivnostima.
Abstract (english) Objective: The aim of this study is to examine the quality of life in children and young people with hemophilia and their families, and assessment of possible differences in quality of life between children and their parents.
Materials and methods: An anonymous questionnaire was given to children and adolescents with establish diagnosis of haemophilia, and their parents, who were monitored after diagnosis at the Center for haemophilia of the Referral center for Pediatric Hematology, Oncology and Hematopoietic stem cell transplantation of the Department of Pediatrics at University Hospital Centre Zagreb. Examinees estimated their quality of life using a standardized version of the Quality-of-Life Questionnaire „The Quality of life assessment instrument for children and adolescents with haemophilia“(Haemo-Qol, 2002.).
Results: The survey involved 30 boys with hemophilia matched with 30 of their parents. Children estimate that hemophilia, to a lesser extent, affects their quality of life in the assessment of general health. The results showed that parents and children differed significantly only in assessing the impact of hemophilia on the emotional state. Parents estimated that hemophilia affected children’s emotional state to a greater extent than children (p=.006). Children who have more frequent bleeding rate estima the impact on health as more significant. The lowest results were obtained in relation to school functioning. The results showed that there was a statistically significant correlation between the frequency of bleeding and the assessment of the impact of hemophilia on physical health (p<0.01), emotional state (p<0.05), and self-image (p<0.05). Also, children with a more frequent bleeding estimate that hemophilia has a more significant impact on school functioning and sports activities (p<0.05).
Conclusion: Parents of children with hemophilia estimate their children's quality of life as lower than their children's self-assessment. The frequency of bleeding impairs the quality of life of children with hemophilia in terms of health, emotional state, self-image, and functioning in school and sports activities.
Keywords
kvaliteta života
hemofilija
doživljaj
djeca
roditelji
Keywords (english)
quality of life hemophilia
experience
children
parents
Language croatian URN:NBN urn:nbn:hr:224:443628 Study programme Title: Department of Nursing Type of resource Text File origin Born digital Access conditions Access restricted to students and staff of home institution Terms of use Created on 2022-05-26 11:28:40
