Zgodnja obravnava in podpora otrokom z gluhoslepoto ter njihovim staršem : magistrsko delo

Kenda, Marjana (avtor), Zaviršek, Darja (mentor)

Magistrsko delo raziskuje, kako poteka zgodnja obravnava otrok z gluhoslepoto, kakšen je njen pomen za njih ter njihove starše, kakšno podporo prejemajo ter kakšna je vloga socialnih delavk v okviru zgodnje obravnave otrok z ovirami ter svetovalnih delavk v vzgojno-izobraževalnih institucijah pri zagotavljanju takšne podpore. Magistrsko delo temelji na izkušnjah in mnenjih staršev, ki imajo otroka z gluhoslepoto, mladostnikov z gluhoslepoto, svetovalnih delavk, zaposlenih v vzgojno-izobraževalnih institucijah, ter socialnih delavk zaposlenih v centrih za zgodnjo obravnavo, ki sem jih pridobila s pomočjo kvalitativne raziskave. Na podlagi rezultatov sem ugotovila, da so bili vsi otroci z gluhoslepoto deležni zgodnje obravnave, ki se je med njimi precej razlikovala, a nobena ni zelo jasno naslavljala stanja gluhoslepote. Sodelujoči so mnenja, da je zgodnja obravnava za otroka z gluhoslepoto zelo pomembna in da je ključnega pomena, da se otroku čim prej postavi diagnozo ter se z njim začne neposredno delati za zagotovitev optimalnega razvoja. Kljub temu, da starši v sklopu zgodnje obravnave posebej naslovljene podpore niso bili deležni, jim je bila zelo pomembna, saj jim je vzbujala občutek, da niso sami, ter jim predstavljala pomemben vir informacij. Pred vstopom v vzgojno-izobraževalno institucijo otroci z gluhoslepoto poleg zdravstvenih obravnav niso prejeli nobene podpore. Tudi starši pred vstopom otroka v vzgojno-izobraževalno institucijo niso prejeli nobene podpore. Ravno tako med otrokovim obiskovanjem vzgojno-izobraževalne institucije večina staršev ni prejela posebej naslovljene podpore, saj je bila ta usmerjena v otroka. Podpora in prilagoditve, ki so jih prejemali otroci z gluhoslepoto med obiskovanjem vzgojno-izobraževalne institucije, so se zelo razlikovale. Izpostavljenih je bilo kar nekaj pomanjkljivosti podpore, ki so bile povezane predvsem z neznanjem in neusposobljenostjo različnih strokovnjakov za delo z otrokom z gluhoslepoto ter splošnim nerazumevanjem stanja gluhoslepote ter s tem povezane specifičnosti potreb oseb z gluhoslepoto. Socialne delavke v sklopu zgodnje obravnave in svetovalne delavke v vzgojno-izobraževalnih institucijah v večini primerov niso imele nobene posebne vloge pri podpori otrokom z gluhoslepoto in njihovim staršem. Moji predlogi za izboljšanje stanja so povezani zagotovitvijo stalne in kontinuirane pomoči in podpore tako otrokom z gluhoslepoto kot njihovim staršem ter ozaveščanjem in izobraževanjem širše laične in strokovne javnosti o gluhoslepoti ter pomenu identifikacije in njenega razumevanja za zagotavljanje kakovostne podpore.

• Jezik: Slovenski jezik
• Ključne besede: hendikep, gluhoslepota, zgodnja obravnava, podpora, starši otrok z ovirami
• Vrsta gradiva: Magistrsko delo/naloga
• Tipologija: 2.09 - Magistrsko delo
• Organizacija: FSD - Fakulteta za socialno delo
• Kraj izida: Ljubljana
• Založnik: [M. Kenda]
• Leto izida: 2021
• Št. strani: 326 str.
• PID: 20.500.12556/RUL-133274
• UDK: 364.4-056.262/.263
• COBISS.SI-ID: 89384451
• Datum objave v RUL: 19.11.2021

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: Early Intervention and Support for Children with Deafblindness and Their Parents

Izvleček

The master’s thesis data researches the early treatment of children with deafblindness, its importance for them and their parents, the support they receive as well as the role of counsellors in educational institutions and social workers in an early treatment centre for children with disabilities in supporting them. The master’s thesis is based on the experience and opinions of parents with children with deafblindness, adolescents with deafblindness, counsellors who work in educational institutions and social workers employed in early treatment centres. Their opinions were gathered through qualitative research. Based on the results, I concluded that all children with deafblindness received early treatment, which varied considerably between them, but no treatment addressed the state of deafblindness very clearly. Research participants find early treatment for a child with deafblindness very important, and they believe it is crucial for the child to be diagnosed as soon as possible and to start working directly with the child to ensure their optimal development. Even though the parents did not receive specially addressed support as part of the early treatment, it was very important to them, as it gave them the feeling that they were not alone and provided them with an important source of information. Before entering the educational institution, children with deafblindness did not receive any support other than medical treatment, nor did their parents. Moreover, most parents did not receive any specially addressed support while their child was attending an educational institution as it was only addressed to the child. The support and adjustments that children with deafblindness received while attending an educational institution varied greatly between them. However, quite a few downsides of support were highlighted, which were mainly related to the lack of knowledge and skills of various professionals to work with a child with deafblindness, the general misunderstanding of deafblindness as well as the related specific needs of people with deafblindness. The majority of parents did not meet social workers as part of the early treatment of children with disabilities, nor did the social workers or counsellors have any special role in supporting them and their children. My suggestions for improvement are mostly related to providing permanent and continuous help and support to children with deafblindness and their parents, to raising awareness and educating general and professional public about deafblindness as well as the importance of identifying and understanding deafblindness to ensure quality support.

• Ključne besede: handicap, deafblindness, support, early intervention, parents of children with disabilities