Izzivi in doživljanje staršev otrok z avtističnimi motnjami

Jarc, Maruša (avtor), Zrim Martinjak, Nataša (mentor)

Magistrsko delo obravnava izzive in doživljanje staršev otrok z avtističnimi motnjami (AM). Pri tem izhaja iz teoretičnih izhodišč ključnih oseb, ki so v svojem življenju prve prišle v stik z otroki z avtističnimi motnjami, kasneje pa tudi z njihovimi starši. Večino teoretičnih izhodišč sem črpala iz spoznanj Lea Kannerja, Hansa Aspergerja ter Lorne Wing. Pomembno mesto imajo tudi izkušnje Tonyja Attwooda in Branke Jurišić. V teoretičnem deluje so najprej opredeljene avtistične motnje, vzroki AM, zgodovina odkrivanja AM, proces diagnosticiranja ter ključne značilnosti teh otrok in njihovega izobraževanja. V nadaljevanju je predstavljena družina otroka z AM ter seznanitev in proces soočanja staršev s posebnimi potrebami. Izpostavljene so nekatere značilnosti staršev otrok z AM, izzivi, s katerimi se soočajo, in značilnosti življenja s takim otrokom. Nazadnje je še predstavljen pomen podpore in pomoči staršem, oblike pomoči, pomen sodelovanja s strokovnjaki ter pomen vloge socialnega pedagoga pri delu s starši. Namen empiričnega dela je bil preveriti, kako in s kakšnimi izzivi se soočajo starši otrok z AM ter kakšno je njihovo doživljanje. Želela sem preveriti tudi, kaj vpliva na uspešnost soočanja z izzivi. Raziskave so namreč pokazale, da se starši otrok z AM soočajo z izzivi tako doma kot v skupnosti. V primerjavi z drugimi starši so izpostavljeni večjemu stresu, nevarnostim finančne obremenitve, slabšemu duševnemu zdravju ter možnostim razveze zakonske zveze. Pomembno podporo jim lahko predstavljajo različne osebe, storitve v različnih sektorjih ter doživljanje uspeha ob soočanju z izzivi. Raziskava je bila izvedena s kvalitativnim raziskovalnim pristopom, pri čemer sem uporabila intervjuje, izvedene posebej za to raziskavo. Vzorec je zajemal 11 staršev različno starih otrok z avtističnimi motnjami z različnih področij Slovenije. Z opravljeno raziskavo sem ugotovila, da se starši soočajo z izzivi, ki so vseobsegajoči in za starše zelo obremenjujoči. Ključne izzive staršem predstavlja proces soočanja z otrokovimi odstopanji, vijugasta pot k iskanju informacij in odgovorov glede posebnosti otrokovega stanja, negotovost ter pomanjkanje orientacije pri iskanju podpore in pomoči za otroka in zase, sprijaznjenje z otrokovim vplivom na družino ter s tem povezanimi spremembami, iskanje ustrezne vzgojno-izobraževalne ustanove za otroka ter pričakovano partnersko sodelovanje s strokovnimi delavci. Magistrsko delo na podlagi raziskave prispeva k že obstoječim, a redkim raziskavam na področju staršev otrok z AM v našem polju, predvsem pa poda vpogled v to, kako se starši z omenjenimi izzivi soočajo, kaj doživljajo ob teh izzivih, kako so uspešni pri soočanju z njimi in tako izpostavi pomembne pomanjkljivosti na področju razumevanja in dela s starši otrok z avtističnimi motnjami.

• Jezik: Slovenski jezik
• Ključne besede: avtizem
• Vrsta gradiva: Magistrsko delo/naloga
• Tipologija: 2.09 - Magistrsko delo
• Organizacija: PEF - Pedagoška fakulteta
• Leto izida: 2019
• PID: 20.500.12556/RUL-108538
• COBISS.SI-ID: 12505161
• Datum objave v RUL: 17.07.2019

Sekundarni jezik

• Jezik: Angleški jezik
• Naslov: Challenges and experience faced by parents of children with autism spectrum disorder

Izvleček

This thesis deals with challenges and experiences faced by parents of children with autism spectrum disorder (ASD). It derives from theoretical findings of crucial experts who first came into contact with children with autism spectrum disorder and later with their parents. The majority of the theoretical basis is drawn from the findings of Leo Kanner, Hans Asperger and Lorna Wing. The experiences of Tony Attwood and Branka Jurišić also play an important part. The theoretical part provides definitions of autism spectrum disorders, causes of ASD, history of ASD discoveries, diagnosis process and main characteristics of children with ASD and their education. Furthermore, we described a family of a child with ASD together with parents' acquaintance and process of dealing with special needs. The last part offers an insight into the importance of supporting and helping these parents, the forms of help, the importance of cooperating with experts and the importance of social pedagogy worker's role in working with parents. The aim of the empirical part was to examine how and with what challenges parents of children with ASD deal and what is their experience. We also wanted to verify the factors that affect the successfulness of coping with these challenges since previous researches show that parents of children with ASD face challenges both at home and in the community. Compared to other parents, they are exposed to increased stress, financial burden possibilities, poorer mental health and enlarged possibilities of divorce. Various people, services in different sectors and experiencing success in facing the challenges can be of great support. The research was carried out with a qualitative approach, using the interviews conducted specifically for the purpose of this thesis. The sample included 11 parents of children with ASD of different ages and from various parts of Slovenia. The results show that these parents face challenges that are integral and overwhelming. Key challenges are presented by the process of facing the child's deviation, the indirect way of obtaining information and answers regarding the specifics of the child's condition, the uncertainty and the lack of orientation when seeking support and help for the child and themselves, the reconciliation with the child's effect on the family and the changes that come along, finding an appropriate educational institution for the child, and the expected cooperation of both parents with the experts. This research contributes to existing, but rare studies in the field of parents of children with ASD in our region, but most of all, it offers an insight into how parents deal with such challenges, how they experience them and how successful they are in coping with them. Consequently, it points to numerous deficiencies in the field of understanding and working with parents of children with ASD.

• Ključne besede: autism