Kakovost življenja otrok s cerebralno paralizo - psihosocialni vidik : pregled literature

Kos, Manca (author), Bizjak, Martina (mentor)

Uvod: Cerebralna paraliza je kronična, neprogresivna in trajna možganska okvara. V svetu je eden od vodilnih razlogov za telesno invalidnost med otroki. Za cerebralno paralizo so značilne motnje v razvoju gibanja in drže, pogosto jim je pridružena tudi duševna zaostalost. Oblika in stopnja cerebralne paralize močno vplivata na kakovost življenja otroka in njegove družine. Skrb za otroka s cerebralno paralizo povzroča veliko težav na duševnem, socialnem in finančnem področju družine. Pomembno vlogo pri informiranju, svetovanju in podpori otroka in družine ima medicinska sestra. Namen: Namen diplomskega dela je na teoretični ravni predstaviti kakovost življenja otroka s cerebralno paralizo in njegove družine ter vlogo medicinske sestre. Metode dela: Pri pisanju diplomskega dela je bila uporabljena opisna metoda dela. Narejen je bil kritični pregled izbrane slovenske in tuje literature. Uporabljeni so bili strokovni in izvirni znanstveni članki. Pregled literature je potekal s pomočjo podatkovnih baz Medline (PubMed), CINAHL, ScienceDirect. Razprava in sklep: Čeprav ima cerebralna paraliza velik vpliv na vsakdanje življenje otroka, so raziskave pokazale, da otrokom s cerebralno paralizo sama diagnoza pravzaprav ne predstavlja močnega vpliva na kakovost življenja. Kakovost življenja je podobna kot pri zdravih vrstnikih, na šolskem področju je celo boljša. Otroci s cerebralno paralizo, ki obiskujejo redne šole, navajajo boljšo kakovost življenja kot tisti v posebnih šolah. Biti starš otroka s cerebralno paralizo je stresno, telesno naporno, ogromno je odrekanja. Družine z otrokom s cerebralno paralizo so zaradi nezaposlenosti velikokrat v finančni stiski, kar lahko vodi v revščino in stanje depresije. Najbolj obremenjen član družine je mati, tako fizično, socialno kot duševno. Nezaposlene matere otrok s cerebralno paralizo imajo slabšo kakovost življenja kot zaposlene. Večina družin z otrokom s cerebralno paralizo si želi pomoč in podporo medicinske sestre. Želi informacije in svetovanje v zvezi z otrokovim stanjem. Družini lahko medicinska sestra pomaga z nasveti glede nege, pripomočkov, ki jih potrebujejo, in pri napotitvi k strokovnjakom.

• Language: Slovenian
• Keywords: diplomska dela, zdravstvena nega, cerebralna paraliza, otroci, kakovost življenja, družine, medicinske sestre
• Work type: Bachelor thesis/paper
• Organization: ZF - Faculty of Health Sciences
• Place of publishing: Ljubljana
• Publisher: [M. Kos]
• Year: 2018
• Number of pages: 25 str.
• PID: 20.500.12556/RUL-100540
• COBISS.SI-ID: 5410411
• Publication date in RUL: 25.03.2018

Secondary language

• Language: English
• Title: Quality of life of children with cerebral palsy - psychosocial aspect : literature review

Abstract

Introduction: Cerebral palsy is a chronic, non-progressive and permanent cerebral impairment. It is one of the leading causes of physical disability among children. Cerebral palsy is characterized by disturbances in the development of movement and posture, often accompanied by mental retardation. The shape and degree of cerebral palsy have a major influence on the quality of life of a child and the child's family. Caring for a child with cerebral palsy causes many problems in the mental, social and financial area of the family. A nurse plays an important role in informing, advising and supporting the child and the family. Purpose: The purpose of the thesis is to theoretically present the quality of life of children with cerebral palsy and their families and the role of a nurse in dealing with families of children with cerebral palsy. Methods: Descriptive method was used in writing the thesis. A review of selected Slovenian and foreign literature was made, using following databases: Medline (PubMed), CINAHL, ScienceDirect. Only original research articles were used. Discussion and conclusion: Diagnosis of cerebral palsy does not have a strong influence on the quality of life of children with cerebral palsy. Their quality of life is similar to that of their healthy peers, it is even better in the school area. Children with cerebral palsy who attend regular schools indicate better quality of life than those in special schools. Being a parent of a disabled child is stressful and physically exhausting. Families with children with cerebral palsy are often in financial distress due to unemployment, which can lead to poverty and depression. The most burdened family member is the mother; she is affected physically, socially and mentally. Unemployed mothers of children with cerebral palsy have a poorer quality of life than employed mothers. Most families with a child with cerebral palsy want help and support from a nurse. They want information and counselling regarding their child's condition. A nurse can help families identify the resources they need and finding professionals. With active work, a nurse can enable fast, organized, professional and quality treatment of the child and the family.

• Keywords: diploma theses, nursing care, cerebral palsy, children, quality of life, families, nurses