Ocena kakovosti življenja otrok s cerebralno paralizo : diplomsko delo

Bajc, Neja (avtor), Šuc, Lea (mentor), Groleger Sršen, Katja (komentor), Gričar, Nevenka (recenzent)

Uvod: Cerebralna paraliza je krovni izraz za skupino razvojnih motenj, za katere so značilne motnje gibanja in drže, motnje občutenja, lahko tudi kognitivne motnje, motnje komunikacije in hranjenja. Je najpogostejša posledica okvare telesnih zgradb pri otrocih in hkrati rezultat nenapredujoče okvare ali poškodbe možganov v razvoju. Pogostost se giblje nekje od 1,5 do 3 na 1000 živorojenih otrok. Svetovna zdravstvena organizacija kakovost življenja opredeljuje kot posameznikovo blaginjo, splošno dobro počutje in zadovoljstvo z življenjem z vidika kulture, odnosov, vrednot, ciljev in standardov. Obstaja več dejavnikov, ki vplivajo na kakovost življenja otrok s cerebralno paralizo in to so: telesna okvara otroka, stres, socialno ekonomski status družine, socialna vključenost in drugi okoljski dejavniki. Namen: Želeli smo raziskati povezavo med cerebralno paralizo in kakovostjo življenja ter kako otroci s cerebralno paralizo stopnje I po sistemu razvrščanja otrok s cerebralno paralizo glede na funkcijo grobega gibanja ocenjujejo kakovost življenja in kako jo ocenjujejo njihovi starši. Metode dela: Uporabili smo kvantitativno raziskovalno metodo. V raziskavi smo uporabili v slovenščino preveden ocenjevalni instrument Ocena kakovosti življenja otrok s cerebralno paralizo (The Cerebral Palsy Quality of Life-Child). Vključili smo deset otrok, starih od 9 do 12 let, ki so uvrščeni v I. stopnjo Sistema za razvrščanje otrok s cerebralno paralizo glede na veščine grobega gibanja in njihovih osem staršev, ki so bili z otroki vključeni v program rehabilitacije na Univerzitetnem Rehabilitacijskem Inštitutu Republike Slovenije Soča. Rezultati: Otroci in njihovi starši so svojo kakovost življenja ocenili kot dobro. Pri otrocih je bil razpon ocen od 53,1 % do 79 %, razpon ocen staršev je bil od 54 % do 83,5 %. Pet od osmih staršev je kakovost življenja njihovega otroka ocenilo višje kot otrok sam. Razprava in zaključek: Otroci menijo, da je njihova kakovost življenja dobra, prav tako jo ocenjujejo tudi njihovi starši. V nadaljnjih raziskavah z uporabo ocenjevalnega instrumenta bi bilo treba vključiti večje število udeležencev.

• Jezik: Slovenski jezik
• Ključne besede: diplomska dela, delovna terapija, otroci s posebnimi potrebami, ocenjevanje, kakovost življenja
• Vrsta gradiva: Diplomsko delo/naloga
• Tipologija: 2.11 - Diplomsko delo
• Organizacija: ZF - Zdravstvena fakulteta
• Kraj izida: Ljubljana
• Založnik: [N. Bajc]
• Leto izida: 2023
• Št. strani: 26 str., [15] str. pril.
• PID: 20.500.12556/RUL-147150
• UDK: 615.851
• COBISS.SI-ID: 157473539
• Datum objave v RUL: 24.06.2023

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: An assessment of the quality of life in children with cerebral palsy : diploma work

Izvleček

Introduction: Cerebral palsy is an umbrella term for a group of developmental disorders, characterized by disturbances of movement and posture, can also of cognition, communication and feeding. It is the most commmon consequence of the malformation of body structures in children and is the result of non-progressive damage or damage to the developing brain. The frequency of cerebral palsy ranges from 1.5 to 3 per 1000 live births. The World Health Organization defines quality of life as an individual’s perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations, standards and concerns. There are several factors that affect in the quality of life of children with cerebral palsy and these are: physical disability of the child, stress, socioeconomic status of the family, social inclusion and other environmental factors. Purpose: We aimed to investigate connection between cerebral palsy and quality of life and how children with cerebral palsy level I as well as their parents evaluate the quality of life according to the Gross Motor Function Classification System. Methods: A quantitative methodological approach was used. In this research we used the evaluation instrument »Assessment of the quality of life of children with cerebral palsy«, translated into Slovene. The observation and research was conducted with the help of 10 childen aged 9 to 12 with Gross Motor Function Classification System level I and their 8 parents, who were included in the rehabilitation program at the University Rehabilitation Institute of the Republic of Slovenia Soča with the children. Results: Children with Gross Motor Function Classification System level I and their parents rated their quality of life as good. The children’s ratings ranged from 53,1% to 79%, and with their parents the ratings ranged from 54% to 83,5%. Five out of eight parents rated their child’s quality of life higher than the child himself. Discussion and conclusion: Children with cerebral palsy have a good quality of life, and so do their parents. Further research with evaluation instrument should include a wider sample of participants.

• Ključne besede: diploma theses, occupational therapy, children with special needs, assessment, quality of life