Ocenjevanje kakovosti življenja otrok s cerebralno paralizo - Volčini, Lara (L. Volčini, 2021)
Uvod: Cerebralna paraliza je klinična diagnoza, ki opredeljuje skupino motenj gibanja in drže, kognitivnih zmožnosti, motenj hranjenja in komunikacije, motenj procesiranja dražljajev, ki so posledica okvare razvijajočih se možganov otroka. Je najpogostejši vzrok motenj funkcioniranja, težav pri izvedbi aktivnosti in sodelovanja pri otrocih. Kakovost življenja je Svetovna zdravstvena organizacija opredelila kot posameznikovo blaginjo in splošno zadovoljstvo v življenju, gledano z vidika kulture, vrednot ter osebnih pričakovanj. Namen: Želeli smo raziskati, kakšen vpliv ima cerebralna paraliza na otrokovo kakovost življenja. Z ocenjevalnim instrumentom za oceno kakovosti življenja, prevedenim v slovenščino (The Cerebral Palsy Quality of Life-Child), oziroma različicami za otroke s cerebralno paralizo in njihove starše smo želeli ugotoviti, kako sami ocenjujejo kakovost življenja. Metode dela: V prvem delu smo opravili pregled strokovne in znanstvene literature v spletnih bibliografskih bazah: PubMed, DiKUL, COBBIS, NCBI, CINAHL with Full Text, ResearchGate in ScienceDirect. V drugem delu smo ocenjevalni instrument Ocena kakovosti življenja otroka s cerebralno paralizo prevedli v slovenščino in ga uporabili v raziskavi. Vključili smo 10 otrok, starih od 9 do 12 let, in njihove starše. Otroci in njihovi starši so bili vključeni v program rehabilitacije na Univerzitetnem rehabilitacijskem inštitutu Republike Slovenije – Soča. Rezultati: V pregledu literature smo našli osem primernih člankov. Vključeni otroci in njihovi starši so svojo kakovost življenja ocenili kot dobro. Razpon ocen kakovosti življenja otrok je bil od 58,2 % do 77,4 %, razpon ocen staršev je bil od 42,3 % do 78,2 %. Razprava in zaključek: Otroci s cerebralno paralizo imajo dobro kakovost življenja, tako jo ocenjujejo tudi njihovi starši. Raziskavo bi bilo treba razširiti in vključiti več otrok ter zbrati podatke o dejavnikih, ki poleg bolezni vplivajo na kakovost življenja. Introduction: Cerebral palsy is a clinical diagnosis that defines a group of movement and posture disorders, cognitive abilities, eating and communication disorders, sensory processing disorders, that result from impaired development of child's brain. It is the most common cause of dysfunction, difficulty in performing activities and participation in children. The World Health Organization has defined quality of life as an individual's wellbeing and general satisfaction in life, viewed in terms of culture, values and personal expectations. Purpose: We wanted to research what impact cerebral palsy has on a child's quality of life. With the help of the Cerebral Palsy Quality of Life-Child questionnaire translated into Slovenian language (self-report version for children and primary caregiver version), we wanted to find out how children with cerebral palsy and their parents assess their quality of life. Methods: In the first part, we reviewed technical and scientific literature found in online bibliographic databases: PubMed, DiKUL, COBBIS, NCBI, CINAHL with Full Text, ResearchGate and ScienceDirect. In the second part, we translated the CP QoLChild questionnaire into Slovene and used it in our research. We included 10 children aged 9 to 12 years and their parents who were at the time of research participating in the rehabilitation program at the University Rehabilitation Institute of the Republic of Slovenia – Soča. Results: In a review of the literature, we found eight appropriate articles. The involved children and their parents rated their quality of life as good. The range of children's assessments of the quality of life ranged from 58,2 % to 77,4 %, range of parent's assessments was from 42,3 % to 78,2 %. Discussion and conclusion: Children with cerebral palsy have a good quality of life likewise parents assess it the same. Research should be expanded and include more children. Data on factors, that in addition to the cerebral palsy itself might affect the quality of life, should be collected.