Kvaliteta življenja otrok in mladostnikov s cistično fibrozo

(diplomsko delo)

Laura Gregorinčič (Author), Jadranka Stričević (Mentor), Jernej Dolinšek (Co-mentor)

Abstract

Uvod: Cistična fibroza je multisistemska bolezen, za katero so v preteklosti umirali otroci in mladostniki, v zadnjih 20 letih pa se je zaradi uporabe presejalnih orodij za prepoznavanje CF ter vse večjih možnosti terapij življenjska doba podaljšala. Multidisciplinarna obravnava in holistični pristop pozitivno vplivata na psihofizični in socialni razvoj otroka oz. mladostnika, da se laže sooči z negativnimi posledicami, ki jih pušča bolezen. Namen zaključnega dela je ugotoviti, kakšna je kvaliteta življenja otrok in mladostnikov s CF s psihofizičnega in socialnega vidika. Metode: Uporabili smo deskriptivno metodo dela. Izvedli smo sistematični pregled znanstvene in strokovne literature obravnavane teme. V tabelah smo predstavili karakteristike identificiranih relevantnih virov, ki smo jih izbrali in prikazali skozi PRISMO. Kot orodje za kritično oceno člankov smo uporabili piramido hierarhije dokazov, na raziskovalno vprašanje smo odgovorili z analizo izbranih znanstvenih spoznanj. Rezultati: Po kritični oceni 10 člankov smo ugotovili, da je zaradi presejalnih testov novorojenčkov in naprednega zdravljenja življenje bolnikov daljše, kvaliteta življenja boljša. V adolescenci lahko pride do depresije, anksioznosti in strahu pri spopadanju z boleznijo, vendar podpora družine in sovrstnikov pozitivno vpliva na obvladovanje bolezni. Še vedno pa manjkajo strategije z bolj natančnimi usmeritvami glede zdravljenja in tega, kako se lahko bolniki še laže soočijo s simptomi bolezni. Pri tem imata glavno vlogo pozitivna naravnanost in holističen pristop. Diskusija in zaključek: Pozitivno družinsko okolje, dinamika in holističen pristop pozitivno vplivajo k optimalnemu zdravljenju otrok in mladostnikov s CF. Narejenih je veliko pozitivnih premikov, ki vodijo v izboljšano kvaliteto življenja.

Keywords

cistična fibroza;psihofizično zdravje;otroci in mladostniki;kronična bolezen;pljučna funkcija;

Data

Language:	Slovenian
Year of publishing:	2022
Typology:	2.11 - Undergraduate Thesis
Organization:	UM FZV - Faculty of Health Sciences
Publisher:	[L. Gregorinčič]
UDC:	616-002.17-053.2(043.2)
COBISS:	96212995
Views:	141
Downloads:	45
Average score:	0 (0 votes)
Metadata:

Other data

Secondary language:	English
Secondary title:	Quality of life in children and adolescents with cystic fibrosis
Secondary abstract:	Introduction: Cystic fibrosis is a multisystemic disease for which children and adolescents have died in the past, but in the last 20 years the use of screening tools to identify CF and the increasing possibility of therapy has increased lifespan. Multidisciplinary treatment and holistic approach have a positive impact on the psychophysical and social development of children or adolescents in order to better cope with the negative consequences of the disease. The aim of this thesis is to determine the quality of life of children and adolescents with CF from a psychophysical and social point of view. Methods: We used a descriptive method. We conducted a systematic review of the scientific and professional literature on the topic. In the tables we presented the characteristics of the identified relevant sources, which we selected and presented through the PRISMA standard. We used the pyramid of the hierarchy of evidence as a tool for critical evaluation of the articles, and we answered the research question by analysing the selected scientific findings. Results: After a critical evaluation of 10 articles, we found that due to screening tests in neonates and advanced treatment, due to neonatal screening tests and advanced treatment, patients`s lives are longer and their quality of life is better. In adolescence, depression, anxiety and fear can occur when coping with the disease, but the support of family and peers has a positive effect on disease management. However, there is still a lack of strategies with more precise guidelines regarding treatment and how patients can cope even better with the symptoms of the disease. A positive attitude and a holistic approach play a major role. Discussion and conclusion: A positive family environment and dynamics, a holistic approach, have a positive impact on the optimal treatment of children and adolescents with CF. Many positive shifts that lead to an improved quality of life have been made.
Secondary keywords:	cystic fibrosis;psychophysical health;children and adolescents;chronis disease;lunge function;
Type (COBISS):	Bachelor thesis/paper
Thesis comment:	Univ. v Mariboru, Fak. za zdravstvene vede
Pages:	VII, 36 f.
ID:	14037544