Kvaliteta življenja družine otroka z avtističnimi motnjami s perspektive matere

Selčan, Ula (author), Filipčič, Tjaša (mentor), Bezenšek, Ana (co-mentor)

Starši otrok z avtističnimi motnjami se srečujejo z različnimi ovirami in težavami, ki močno vplivajo na kvaliteto življenja vseh družinskih članov. Posebno veliko breme in skrb nosijo matere otrok z avtističnimi motnjami, ki v procesu vzgoje otroka doživljajo višjo stopnjo stresa. V magistrskem delu smo obravnavali kvaliteto življenja družine otroka z avtističnimi motnjami s perspektive matere in proučili dejavnike, ki v veliki meri vplivajo na slabšo kvaliteto življenja družine z otrokom z avtističnimi motnjami. V empiričnem delu smo uporabili raziskovalno metodo študije primera družine otroka z avtističnimi motnjami s perspektive matere. Sodelujoča je v prvem delu raziskave izpolnila lestvico kvalitete življenja. V drugem delu smo z materjo naredili intervju, v okviru katerega smo podrobneje raziskali najpogostejše dejavnike, ki vplivajo na kvaliteto življenja družine otroka z avtističnimi motnjami, in pridobili boljši vpogled v posledice, ki jih imajo dejavniki na življenje matere in celotne družine otroka z avtističnimi motnjami. Ugotovili smo, da so v preteklosti nižje prilagoditvene spretnosti in vedenjske težave otroka imele pomemben negativen vpliv na kvaliteto življenja matere. Dejavnik, ki je glede na naše ugotovitve najbolj negativno vplival na kvaliteto življenja matere in celotne družine, je bil pomanjkanje pomoči, ki jo je mati potrebovala v času, ko je otrok prejel diagnozo avtistične motnje. V preteklosti se je pomanjkanje nudenja pomoči odražalo tudi na duševnem zdravju matere, saj je bilo v času, ko je bil otrok mlajši, v njenem življenju prisotnega veliko stresa, stisk, tesnob in paničnih napadov. K prisotnosti teh dejavnikov je vplivalo tudi to, da je mati v tem obdobju veliko časa preživela sama z otrokom, saj je bil mož dosti časa službeno odsoten. Resnost otrokovih motenj je imelo na kvaliteto materinega življenja in na življenje celotne družine negativen vpliv predvsem z vidika nesamostojnosti otroka in posledično večje potrebe po pomoči. V želji po večji samostojnosti otroka in zmanjšanju potrebne pomoči je družina začela posegati po različnih izobraževanjih, terapijah in dodatnih aktivnostih za sina. Rezultati raziskave so pokazali, da ima financiranje dodatnih aktivnosti, dejavnosti in terapij za otroka z avtističnimi motnjami vpliv na kvaliteto življenja družine. Kljub temu da se družina zaradi financiranja ni nikoli znašla v finančnih stiskah, je bilo znotraj družine še vseeno potrebno veliko prilagajanja in odrekanja, da se je mati lahko udeležila izbranih izobraževanj. Novo pridobljena znanja so materi pomagala, da se je lažje soočala z vsakodnevnimi stresnimi situacijami ter boljše prilagajala okolje svojemu otroku in tako pozitivno vplivala na kvaliteto svojega življenja in celotne družine. Pozitivni vpliv na kvaliteto življenja matere in celotne družine imajo tudi dobri odnosi znotraj ožje in širše družine. Mati in njena družina je s strani sorodnikov prejela veliko podpore in pomoči, kar ima pomemben doprinos h kvalitetnemu življenju matere, njenega moža in otroka z avtističnimi motnjami.

• Language: Slovenian
• Keywords: kvaliteta življenja
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Year: 2021
• PID: 20.500.12556/RUL-132027
• COBISS.SI-ID: 79782659
• Publication date in RUL: 13.10.2021

Secondary language

• Language: English
• Title: Quality of family life with an autistic child from the mother's viewpoint

Abstract

Parents of autistic children face different obstacles and problems that affect the quality of life of all the family members. In particular, mothers are the ones who experience higher levels of stress while carrying the burden and care for autistic children. In the Master’s Thesis, we discuss the quality of family life with an autistic child from the mother’s perspective. Moreover, we discuss the factors affecting the quality of life. In the empirical part, we use the research method of a case study of a family with an autistic child. We focus on the mother’s perspective. In the first part, the participant fulfilled the quality of life scale. In the second part, we interviewed the mother. In the interview, we talk about the most common factors affecting the quality of life of the family with an autistic child. Moreover, we get better insight into the consequences that those factors have on the life of the mother and the whole family. As shown in our findings, lower adaptive skills and behavioural problems of the child have a significant negative impact on the quality of life of the mother and the whole family. The lack of assistance the mother needed when faced with the diagnosis of autistic spectrum disorder, is one of the factors that most negatively affect the quality of life. In the past, when the child was younger, the lack of assistance affected the mental health of the mother, since she was stressed, distressed, and had anxiety and panic attacks. Moreover, the mother spent a lot of time alone with the child, since the husband was working. The child's disability harmed the quality of life of the mother and the whole family since the child was not independent and, consequently, he needed more help. To gain independence, the family attended different training, therapies, and additional activities. The findings show that the funding of activities and therapies for an autistic child affects the quality of life. Luckily, the family never endured difficulties due to the funding. But there were many adjustments and sacrifices for the mother to attend the training. Due to the acquired knowledge, the mother easier coped with everyday situations and helped adapt the environment for her child. The aforementioned had a positive impact on the quality of her life and the life of the whole family. Good relationships within the immediate and extended family have a positive effect on the quality of life of the mother and the family. The mother and her family have a lot of support from relatives, which improves the quality of her life, the life of her husband, and her autistic child.

• Keywords: quality of life