Kvaliteta života roditelja djece s cerebralnom paralizom

master's thesis

• Title (english): Quality of life of parents of children with cerebral palsy
• Author: Nikolina Mikulić
• Mentor: Renata Pinjatela (mentor)
• Committee member: Renata Pinjatela (predsjednik povjerenstva)
• Committee member: Renata Martinec (član povjerenstva)
• Committee member: Damir Miholić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2021-09-13, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Uvod: Kvaliteta života roditelja djece s cerebralnom paralizom narušena je uslijed niza
čimbenika.
Cilj: Ispitati kvalitetu života roditelja djece s cerebralnom paralizom.
Materijali i metode: Istraživanje je provedeno tijekom svibnja i lipnja 2021. godine putem
Google Forms obrasca, online. Anketni upitnik proslijeđen je na trinaest adresa, udruga u
Hrvatskoj koje su registirane za rad s djecom s cerebralnom paralizom i njihovim obiteljima.
Udruge se nalaze u Zagrebu, Osjeku, Splitu, Sisiku, Rovinju, Metkoviću.
Predstavnici udruga anketni link proslijedili su roditeljima. Anonimni anketni upitnik popunilo
je 16 roditelja djece s cerebralnom paralizom.
Istraživanje je provedeno pomoću strukturiranog intervjua uz korištenje anketnog upitnika.
Anketni upitnik sastoji se od 19 pitanja raspoređenih u 10 skupina. Za statističku analizu svi
podaci su unijeti i obrađeni u SPSS programu, a za analizu podataka korištena je deskriptivna
metoda.
Rezultati istraživanja: Svi ispitanici složili su se sa konstatacijom da se njihov život prema
kvaliteti razlikuje od života roditelja djece bez teškoća. Na pitanje jesu li zadovoljni kvalitetom
života 25% njih je izjavilo da je nezadovoljno, a 50% roditelja često ima negativne osjećaje.
68,8 % roditelja nije zadovoljno inkluzijom djece u redovitu sredinu, te 56,3 % roditelja nije
zadovoljno podrškom djeteta u odgojno-obrazovnom sustavu. Na pitanje je li prisutnost
poteškoće djeteta s cerebralnom paralizom utjecala na želju za proširenjem obitelji 62,5%
ispitanika je odgovorilo da jeste.
Zaključak: Istraživanje je pokazalo da su roditelji svjesni činjenice da su često bili
onesposobljeni baviti se drugim članovima obitelji radi toga što su zaokupljeni brigom oko
djeteta s cerebralnom paralizom, te je nešto više od polovice roditelja istaknulo da je prisutnost
poteškoće kod njihovog djeteta utjecala i utječe na želju za proširenjem obitelji. O kvaliteti
života roditelja djece s cerebralnom paralizom govori i podatak da se čak 75 % roditelja složila
se s činjenicom da su bili onesposobljeni za profesionalan rad u struci i traženju posla radi toga
što su potrebe njihovog djeteta zahtijevale dodatan angažman te da polovinu roditelja sve te
okolnosti čine stresnima, frustrirajućima i nezadovoljnima.

Abstract (english)

Introduction: The quality of life of parents of children with cerebral palsy is lowered due to a
number of factors.
Objective: To examine the quality of life of parents of children with cerebral palsy.
Materials and methods: The research was conducted during May and June 2021 via the
Google Forms form, online. The questionnaire was sent to thirteen addresses, associations in
Croatia that are registered to work with children with cerebral palsy and their families.
Associations are located in Zagreb, Osijek, Split, Sisak, Rovinj, Metković.
The research was conducted using a structured interview using a questionnaire. The
questionnaire consists of 19 questions divided into 10 groups. For statistical analysis, all data
were entered and processed in the SPSS program, and a descriptive method was used for data
analysis. Representatives of the association forwarded the questionnaire link to the parents. An
anonymous questionnaire was completed by 16 parents of children with cerebral palsy.
Research results: All respondents agreed with the statement that their life differs in quality
from the life of parents of children without difficulties. When asked if they are satisfied with
the quality of life, 25% of them said they were dissatisfied, and 50% of parents often have
negative feelings. 68,8% of parents are dissatisfied with the inclusion of children in the regular
education, and 56,3% of parents are dissatisfied with the support of the child in the educational
system. When asked whether the presence of difficulties of a child with cerebral palsy
influenced the desire to expand the family, 62.5% of respondents answered that it surely
affected.
Conclusion: The research showed that parents were aware of the fact that they were often
reluctant to deal with other family members because they were preoccupied with caring for a
child with cerebral palsy, and slightly more than half of parents pointed out that the present
difficulty affected their child. and affects the desire to expand the family. Even 75% of parents
agree with the statement that they were unable to continue to professionally work and had to
quit their job due to their child's needs that required additional engagement, and half of the
parents find their life more stressful, frustrating and unsatisfying.

• Keywords: kvaliteta života; roditelji; cerebralna paraliza; dijete; stres; zadovoljstvo
• Keywords (english): quality of life; parents; cerebral palsy; child; stress; satisfaction
• Language: croatian
• URN:NBN: urn:nbn:hr:158:186410
• Study programme: Title: Graduate study of Educational Rehabilitation; Study programme type: university; Study level: graduate; Academic / professional title: magistar/magistra edukacijske rehabilitacije (magistar/magistra edukacijske rehabilitacije)
• Type of resource: Text
• File origin: Born digital
• Access conditions: Open access; Embargo expiration date: 2022-03-13
• Created on: 2021-12-26 13:52:32