Izzivi in skrb zase med starši otrok z avtističnimi motnjami v času epidemije Covid-19

magistrsko delo

Jerneja Mavrič (Avtor), Darja Zorc-Maver (Mentor)

Povzetek

Magistrsko delo obravnava izzive, stiske in skrb zase staršev, v povezavi z njihovimi otroki z diagnosticiranimi avtističnimi motnjami v času epidemije covida-19 v šolskem letu 2020/21. Teoretični del je sestavljen iz treh sklopov. V prvem delu sem opisala zgodovino avtistične motnje (v nadaljevanju AM), opredelila njeno definicijo in klasifikacijo, Aspergerjev sindrom, napisala nekaj o pogostosti in vzrokih ter se podrobneje poglobila v značilnosti AM. V drugem delu sem opredelila definicijo družine, opisala družino skozi teorijo sistema, značilnosti staršev otrok s posebnimi potrebami (v nadaljevanju OPP), izzive staršev otrok z AM, s katerimi se soočajo, zapisala nekaj o skrbi zase staršev otrok z AM, pomoči in podpori družine otroka z AM ter opisala nabor neformalnih organizacij, na katere se lahko obrnejo starši. V tretjem sklopu pa sem se poglobila še v tematiko epidemije covida-19, in sicer sem opredelila travmatsko krizo, pojasnila posledice socialne izolacije in predstavila šolanje otrok z AM na daljavo. Namen empiričnega dela je pridobiti globlji uvid v doživljanje staršev otrok z AM med obdobjem epidemije covida-19 in ugotoviti, s kakšnimi izzivi in morebitnimi stiskami so se srečevali, kako so se z njimi soočali, na kakšne načine so poskrbeli sami zase in kakšne podpore so bili deležni. Raziskava je bila izvedena s kvalitativnim raziskovalnim pristopom, pri čemer sem uporabila intervjuje, izvedene posebej za to raziskavo. Vzorec zajema sedem mam otrok z diagnosticirano AM, ki obiskujejo redni program s prilagojenim izvajanjem in dodatno strokovno pomočjo ali prilagojeni program z enakovrednim izobrazbenim standardom. Rezultati raziskave kažejo, da so se mame soočale s številnimi izzivi, kot so prevzemanje vloge učitelja, usklajevanje službenih obveznosti in skrbi za otroke, vzpostavitev nove rutine in porazdelitev družinskih nalog. Pri njihovih otrocih z AM je bilo v tem času prisotnega manj neželenega vedenja, saj je bilo doma manj zahtev in bolj prilagojeno okolje. Družine so se novim razmeram v veliki večini dobro prilagodile, odnosi pa so se izboljšali in poglobili. Ugotavljam, da so mame doživljale občutke izčrpanosti in izgorelosti, kar lahko pripišem preobremenjenosti tako v službi kot doma ter pomanjkanju časa za skrb zase. Mame otrok z AM so pomoč in podporo iskale in prejele v šoli in drugih javnih institucijah, podpornih skupinah, predvsem pa pri partnerju in ožji družini, zase pa so skrbele s fizično aktivnostjo v naravi, psihoterapijo, sprostitvenimi tehnikami in medikamentozno terapijo. Magistrsko delo na podlagi raziskave prispeva k že obstoječim, a redkim raziskavam na področju staršev otrok z AM in je prva, ki spregovori o soočanju staršev otrok z AM z življenjskimi krizami, ki lahko tako na otrocih kot starših pustijo pomembne posledice. Predvsem pa delo poda vpogled v doživljanje, načine spoprijemanja in potrebe staršev otrok z AM v kriznih situacijah, kar lahko prispeva k razmisleku o oblikovanju pomoči in podpore tem staršem ob kriznih dogodkih.

Ključne besede

avtistična motnja;starši;covid-19;izzivi;stiske;skrb zase;

Podatki

Jezik:	Slovenski jezik
Leto izida:	2023
Tipologija:	2.09 - Magistrsko delo
Organizacija:	UL PEF - Pedagoška fakulteta
Založnik:	[J. Mavrič]
UDK:	376(043.2)
COBISS:	139973379
Št. ogledov:	18
Št. prenosov:	7
Ocena:	0 (0 glasov)
Metapodatki:

Ostali podatki

Sekundarni jezik:	Angleški jezik
Sekundarni naslov:	Challenges and self-care of parents of children with autism spectrum disorders during the Covid-19 epidemic
Sekundarni povzetek:	The thesis analyses challenges, distresses, and self-care among parents, in relation with their autistic disorder diagnosed children in times of the covid-19 epidemic during the 2020/21 school year. The theoretical part is devised from three segments. The first segment describes the history of autistic spectrum disorder (herein abbreviated as ASD), defining and classifying it, Asperger’s syndrome, discusses the frequency and causes including detailed characteristics of ASD. The second segment defines the concept of family, describes family using the systems theory, explains characteristics of parents of children with special needs (herein abbreviated as CSN), challenges of parents of children with ASD, help and support of ASD children’s families and adds a collection of informal organizations, which can be used by the parents for help. The third segment discusses the topic of the covid-19 epidemic, specifically defining the traumatic crisis, explaining the consequences of social isolation and introducing at home learning for children with ASD. Purpose of the empirical part is to gain a thorough insight into the experience of parents of children with ASD during the covid-19 epidemic and to learn what challenges and potential distresses they faced, how they confronted them, how they took care of themselves, and what kind of support they were given. The study was implemented using a qualitative research approach, using interviews made exclusively for this study. The sample covers seven mothers of children diagnosed with ASD, who attend a regular programme with adjusted learning and additional expert help or adjusted programme with an equal educational standard. Results of the study show mothers confronted multiple challenges, such as assuming the role of a teacher, adjusting work responsibility and child care, establishing new routines, and issuing family roles. Meanwhile, their children with ASD displayed less unwanted behaviour, due to having less challenges at home and a better adjusted environment. A greater majority of the families adapted to the new settings well, improving and deepening their relationships. The mothers experienced feelings of exhaustion and fatigue, which can be attributed to being overburdened at work and home, as well as lack of self-care. Mothers of children with ASD sought help and support and received it, in school and other public institutions, support groups, and mainly from their partner and immediate family, their self-care consisted of physical activity in nature, psychotherapy, relaxation techniques, and drug therapy. On the basis of the study the thesis adds to the already existing, albeit rare studies in the field of parents of children with ASD and it is the first to discuss the experience of parents of children with ASD during life crises, which can leave significant consequences on children and parents. Mainly, the thesis gives an insight into the experience, confrontations and needs of parents of children with ASD in crisis situations, which can add to the discussion of shaping help and support for these parents during crisis events.
Sekundarne ključne besede:	autistic spectrum disorder;parents;covid-19;challenges;distresses;self-care;Avtizem;Covid-19;Univerzitetna in visokošolska dela;
Vrsta dela (COBISS):	Magistrsko delo/naloga
Študijski program:	0
Komentar na gradivo:	Univ. v Ljubljani, Pedagoška fak., Socialna pedagogika
Strani:	1 spletni vir (1 datoteka PDF (56 str.))
ID:	17870878