Razbremenilno varstvo kot podpora družinam otrok z motnjami avtističnega spektra : magistrsko delo

Kompara, Špela (author), Žgur, Erna (mentor), Bezenšek, Ana (comentor)

Magistrsko delo se ukvarja s problemom preobremenjenosti staršev otrok z motnjami avtističnega spektra (MAS) in pomenom razbremenitve oz. odmika od skrbi, ki ga ima razbremenilno varstvo za družino. Družine otrok z MAS so podvržene večjemu tveganju za nizko kvaliteto družinskega življenja in večji stopnji stresa. Zaradi svoje specifične družinske situacije imajo večje potrebe po podpori na različnih področjih. Med drugim starši otrok z MAS poročajo o potrebi po odmiku od skrbi za otroka z MAS, ki ga lahko zagotovi razbremenilno varstvo. To so formalni in neformalni načini, ki staršem omogočijo potrebno podporo, da se za omejen čas odmaknejo od skrbi za otroka z MAS in se tako za določen čas razbremenijo od zahtev in odgovornosti, ki so sicer neprestano prisotne. Ta čas lahko izkoristijo za sprostitev, socialne aktivnosti, rekreacijsko udejstvovanje, čas s partnerjem ali svojimi preostalimi otroki oz. za katerokoli aktivnost, ki je v času prisotnosti otroka z MAS ne morejo opravljati. Ta način podpore se je v tujini izkazal kot učinkovit pri zmanjševanju stresa in dvigu kvalitete življenja družine. Vplivi se kažejo na splošnem učinkovitejšem funkcioniranju družine, uspešnejših in bolj povezanih odnosih med partnerjema, boljšem psihičnem počutju staršev in manjši stopnji depresivnosti in anksioznosti, večjem številu socialnih interakcij in prostočasnih dejavnosti družine ter več možnosti individualne pozornosti za sorojence otroka z MAS. Razbremenilno varstvo, ki je primerno organizirano in usklajeno s potrebami staršev, je lahko učinkovit varovalni dejavnik, ki prispeva k boljšemu delovanju celotne družine in zmanjšuje tveganje za institucionalizacijo otroka z MAS. V izvedeni raziskavi je sodelovalo 81 staršev otrok z diagnozo MAS starih od 4 do 18 let. Ugotovili smo, da je staršem otrok z MAS čas preživet stran od skrbi za otroka z MAS zelo pomemben in si ga želijo. Na to potrebo ne vpliva starost otroka in socialno-ekonomski standard družine oz. izobrazba staršev. Ugotovitve kažejo, da je večini staršev odmik od skrbi za otroka z MAS omogočen največ enkrat na mesec, več kot 30% staršev pa se od skrbi za otroka z MAS lahko odmakne le nekajkrat na leto. Večina staršev zaznava potrebo po odmiku in razbremenitvi od skrbi z MAS kot nezadovoljeno. Obstaja tudi pomembna povezava med zaznano kvaliteto življenja družine in zadovoljenostjo potrebe po odmiku, in sicer starši, ki imajo nezadovoljeno potrebo po odmiku zaznavajo nižjo kvaliteto družinskega življenja. Med starši po rezultatih raziskave obstaja pomembna potreba po vzpostavitvi organiziranih oblik razbremenilnega varstva. Med zaželenimi oblikami prevladuje popoldansko varstvo otroka brez nočitve in varstvo otroka na domu družine po potrebi. Glede na ugotovitve raziskave v magistrskem delu predlagamo tudi vzpostavitev sistema podpore v obliki razbremenilnega varstva v izvedbi študentov prostovoljcev, ki se je v tujini že izkazal za učinkovit model podpore staršem na področju razbremenitve z odmikom od skrbi za otroka z MAS.

• Language: Slovenian
• Keywords: avtizem, otroško skrbstvo, starši otrok s posebnimi potrebami, motnje avtističnega spektra, družina, podpora, odmik od skrbi, razbremenilno varstvo
• Work type: Master's thesis/paper
• Typology: 2.09 - Master's Thesis
• Organization: PEF - Faculty of Education
• Place of publishing: Ljubljana
• Publisher: Š. Kompara
• Year: 2024
• Number of pages: 83 str.
• PID: 20.500.12556/RUL-155588
• UDC: 616.896(043.2)
• COBISS.SI-ID: 191728387
• Publication date in RUL: 07.04.2024

Secondary language

• Language: English
• Title: Respite care as part of the support system for families of children with autism spectrum disorder

Abstract

This master's thesis explores the problem of caregiver burder of parents od children with autism spectrum disorder (ASD) and the importance of relief and respite from everyday care for the child with ASD. Families of children with ASD are at risk for lower quality of family life and higher levels of stress. Parents of children with ASD report an important need for respite and time away from caring for the child with ASD. This can be acheived through respite care, which can be formal or informal, and provides parents a much needed break from caring. This time can be spent relaxing, spending quality time with one's partner or spouse, taking care of the needs of siblings of the child with ASD or engaging in social, recreational activities or any other type of activities that they can't partake in while caring for the child with ASD. This type of family support has proved to be an efficient way to relieve stress and raise the quality of life of families of children with ASD. The positive effects include a more effective overall family functioning, more cohesion within family relationships, better partner or spouse relationships and better marital quality, better psychological well-being, less depression and anxiety among parents, more opportunities and one-on-one parental time for the siblings and more social interactions and leisure activities for the family. Respite care which is properly organized and takes into account the needs of families, can be an effective protective factor contributing to better functioning of the whole family and can reduce the risk of institutionalization of the child with ASD. The study included 81 parents of children with ASD, aged between 4 and 18 years. Results of the study show that time spent away from caring for the child with ASD is very important to parents. This need for respite is not affected by the age of the child with ASD nor by the socio-economical status or parents' education. We found that most parents have the ability to take a break from caring once a month at best, more than 30% of parents can take a break only a couple times a year. Most parents report an unmet need for respite. There is also an important correlation between the perceived family quality of life and the perceived need for respite. Parents who perceive their need for respite as unmet, have a lower quality of life. There is also a great need for organized forms of respite care between parents of ASD. Parents expressed a need for in-home respite care and afternoon respite care without overnight stays. Based on the findings of the present study we propose a model of respite care as a part of the support system for families with children with ASD. This model has been found successful in meeting the needs for respite in other countries. It has proven beneficial for families to partake in respite care provided by volunteering students participating in a student respite provider system for children with ASD.

• Keywords: autism spectrum disorder, family, support, respite, respite care