Iskustva obitelji djece s Dravet sindromom

master's thesis

• Title (english): The family's experience of having a child with Dravet syndrome
• Author: Marta Ćuruvija
• Mentor: Renata Pinjatela (mentor)
• Committee member: Renata Martinec (predsjednik povjerenstva)
• Committee member: Renata Pinjatela (član povjerenstva)
• Committee member: Damir Miholić (član povjerenstva)
• Granter: University of Zagreb; Faculty of Education and Rehabilitation Sciences; Zagreb
• Defense date and country: 2021-07-01, Croatia
• Scientific / art field, discipline and subdiscipline: SOCIAL SCIENCES; Education/Rehabilitation Sciences

Abstract

Cilj ovog istraživanja bio je dobiti uvid u iskustva obitelji djece s Dravet sindromom u
Republici Hrvatskoj odnosno podatke o djetetu i njegovoj dijagnozi, informacije o kvaliteti i
kvantiteti komunikacije roditelja sa stručnjacima, njihovo zadovoljstvo uslugama zdravstvene
i socijalne skrbi, izazove roditeljstva, podršku uže i šire okoline te kvantitetu i vrstu zajedničkog
vremena provedenog s djetetom. Dobivenim uvidom omogućeno je prepoznavanje i bolje
razumijevanje izazova i problema s kojima se obitelj djece s Dravet sindromom svakodnevno
suočavaju. U istraživanju je sudjelovalo 10 majki koje su članice Udruge Dravet sindrom
Hrvatska. Za potrebe istraživanja konstruiran je anketni upitnik „Upitnik o iskustvima roditelja
djece s Dravet sindromom“. Podaci su prikupljeni deskriptivnim znanstveno-istraživačkim
pristupom. Roditelji djece s Dravet sindromom opisali su uobičajeno dugotrajan put do
djetetove dijagnoze, njegovu kliničku sliku, razvojne teškoće i epileptične napadaje. S obzirom
na to da je riječ o specifičnoj i rijetkoj dijagnozi, a kao što rezultati istraživanja pokazuju, mogu
proći mjeseci ili godine do konačno postavljene dijagnoze. Uz to, često se dogodi da dijete bude
dijagnosticirano pogrešnom dijagnozom. Većina roditelja najveću podršku, osim u partneru,
vidi u roditeljima druge djece s Dravet sindromom. Istraživanje je značajno zato što u Republici
Hrvatskoj još nije provedeno istraživanje čiji uzorak čine roditelji djece s Dravet sindromom.
Od iznimne je važnosti provoditi istraživanja poput ovog koja uključuju ispitanike s
dijagnozama rijetkih bolesti, kako bi mogli na odgovarajući način pružiti djeci, ali i čitavoj
obitelji adekvatnu podršku. Glavni nedostatak ovog istraživanja mali je broj ispitanika i
nemogućnost generalizacije rezultata

Abstract (english)

The aim of this paper is to gain insight into the family's experience of having a child with Dravet
syndrome in Croatia. More precisely on information about their child and his diagnosis,
information about quality and quantity of communication with professionals who work with
their children with Dravet syndrome, their opinion about the quality of health and social care,
the challenges they face, the amount and type of support they receive from other people in their
lives and the quality and quantity of time spent with their children. Gaining insight into the
perspective of parenting a child with Dravet syndrome enables a better understanding of the
challenges they face every day. In this research participated 10 mothers who are registered
members of a Dravet syndrome Croatia association. Questionnaire Questionnaire about
experiences of parenting a child with Dravet syndrome is made for the aim of this research. The
descriptive scientific-research approach collected data. The parents of children with Dravet
syndrome described the diagnosis of their child, clinical presentation of Dravet syndrome,
developmental delays, and epileptic seizures characteristic for their child. The results confirm
the fact that Dravet syndrome is a rare and specific disease, and that the final diagnosis could
take up to years. Sometimes, children with Dravet syndrome could be misdiagnosed. Most of
the parents seek their support from the parents of the other children with Dravet syndrome. This
research is important because it is the first one in Croatia with a population of children with
Dravet syndrome. It is very important to implement this kind of researches who are based on a
population with rare disorders so the professionals could improve their competencies in
working with children with Dravet syndrome and their families. The main drawback is the small
number of participants and relatively small sample because of what the results obtained cannot
be generalized to the total population of parents and children with Dravet syndrome.

• Keywords: obitelj; roditelji; djeca; Dravet sindrom
• Keywords (english): family; parents; children; Dravet syndrome
• Language: croatian
• URN:NBN: urn:nbn:hr:158:165041
• 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: 2022-01-01
• Created on: 2021-11-13 13:43:35