KVALITETA ŽIVLJENJA DRUŽIN Z OTROKI S PRADER WILLIJEVIM SINDROMOM

Ferk, Vesna

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Naslov:	KVALITETA ŽIVLJENJA DRUŽIN Z OTROKI S PRADER WILLIJEVIM SINDROMOM
Avtorji:	ID Ferk, Vesna (Avtor) ID SCHMIDT, MAJDA (Mentor) Več o mentorju...
Datoteke:	UNI_Ferk_Vesna_2013.pdf (1,20 MB) MD5: 002D0B4E06ED997A96681FB5FA220922
Jezik:	Slovenski jezik
Vrsta gradiva:	Diplomsko delo
Tipologija:	2.11 - Diplomsko delo
Organizacija:	PEF - Pedagoška fakulteta
Opis:	Prader-Willijev sindrom je le ena izmed mnogih motenj v duševnem razvoju, ki jih poznamo. Zanj so značilne razvojne nepravilnosti, ki se lahko pokažejo že med samo nosečnostjo ali takoj po rojstvu, poleg tega pa obolele spremlja stalna želja po hrani, ki jo je potrebno stalno nadzirati. Če nadzora nad hranjenjem ni, lahko pride do patološke debelosti in posledično do težav z zdravjem. Prav zaradi tega se družine, ki se srečajo s to boleznijo, obenem srečujejo tudi z različnimi problemi/ovirami, ki vplivajo na kvaliteto njihovega življenja. In ker se kvaliteti življenja družin, ki imajo otroka z motnjami v duševnem razvoju, posveča premalo pozornosti, je bil namen moje diplomske naloge ugotoviti kvaliteto življenja družin z otroki s Prader-Willijevim sindromom, pri tem me je zanimalo splošno o družini, zdravje, finančno stanje, podpora drugih oseb in podpora služb za osebe z motnjami v duševnem razvoju. Z anketo, ki sem jo izvedla, in z analizo njenih podatkov, sem ugotovila, da je za kvaliteto življenja staršem zdravje zelo pomembno, pri njenem doseganju pa naletijo na določene ovire, kot so dolge čakalne dobe in oddaljenost služb od kraja bivanja, kar pa jim zaradi stroškov prevoza hkrati predstavlja tudi finančno breme. Starši povedo, da pogrešajo pomoč in podporo bližnjih, ki bi jim prišla zelo prav, hkrati pa so deležni še drugih oblik pomoči, ki jih nudijo različne podporne službe, ki so usposobljene posebej za delo z njimi. V okviru mentalno-higienskih oddelkov so največkrat deležni pomoči pediatra, fizioterapevta in delovnega terapevta, poslužujejo pa se tudi pomoči služb za koordinacijo/centra za socialno delo ter posebnih šol. V zaključku sem prišla do spoznanja, da družine teh otrok v povprečju živijo kvalitetno življenje, vendar imajo pri doseganju le-tega nemalokrat težave in so prepuščene same sebi.
Ključne besede:	otroci z motnjami v duševnem razvoju, Prader-Willijev sindrom, družina, kakovost življenja, pomoč
Kraj izida:	Maribor
Založnik:	[V. Ferk]
Leto izida:	2013
PID:	20.500.12556/DKUM-43240
UDK:	316.728:614.4-053.2(043.2)
COBISS.SI-ID:	20336136
NUK URN:	URN:SI:UM:DK:P8FG5KKR
Datum objave v DKUM:	24.02.2014
Število ogledov:	3891
Število prenosov:	491
Metapodatki:
Področja:	PEF
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Sekundarni jezik

Jezik:	Angleški jezik
Naslov:	QUALITY OF LIVE IN FAMILIES OF CHILDREN WITH PRADER - WILLI SYNDROM
Opis:	Prader-Willi syndrome is one of the many known intellectual disabilities. It is characterized by developmental abnormalities, which could manifest during the pregnancy or immediately after birth. In addition, the diseased have a constant desire for food, which needs to be continually supervised. No supervision over the food intake may lead to pathological obesity and consequently to health issues. For that reason, many families that are confronted with this disease are at the same time confronted with various problems and challenges, which affect their quality of life. Since the quality of life of families, who have a child with intellectual disabilities, is not given enough attention, the purpose of my thesis was to determine the quality of life of families with children with Prader-Willi syndrome. In this respect I have focused on families in general, health, financial situation, support from other people and the support from services for people with intellectual disabilities. Through the analysis of the conducted survey, I found out that health is very important to parents for their quality of life and that achieving this quality is met with certain obstacles, such as long waiting periods and distance from home to work, which is a financial burden to the parents due to transport costs. The parents reported that they lack support from their relatives, which would come in very handy, but that they do receive other forms of assistance provided by various support services that are specifically trained to work with them. The mental-hygiene department often provides them with a paediatrician, a physical therapist and an occupational therapist and they also receive assistance from coordination services, social work centres and specialized schools. In conclusion, I came to the realization that on average these families have a good quality of life, but that they usually have problems achieving it and are often left to fend for themselves.
Ključne besede:	children with intellectual disabilities, Prader-Willy syndrome, family, quality of life, support

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