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Neodvisno življenje mlajših odraslih oseb s cerebralno paralizo
ID Mlakar, Katja (Avtor), ID Filipčič, Tjaša (Mentor) Več o mentorju... Povezava se odpre v novem oknu, ID Razpotnik, Špela (Komentor)

URLURL - Predstavitvena datoteka, za dostop obiščite http://pefprints.pef.uni-lj.si/7395/ Povezava se odpre v novem oknu

Izvleček
Pričujoča doktorska disertacija govori o ljudeh s cerebralno paralizo (v nadaljevanju CP), njihovem vsakodnevnem življenju, odsotnosti družbene moči in o odločitvah, ki jih lahko sprejemajo ter tudi o njihovih nezadovoljenih potrebah, kršenih osnovnih človekovih pravicah, njihovem doživljanju neodvisnega življenja, stigmatizacije, socialne izključenosti in procesov pomoči, ki so jim na voljo pri oblikovanju ustreznih rešitev za svoje življenje. Osebe s CP so pri vzpostavljanju neodvisnosti in razvijanju samoodločanja šibke in zapostavljene, zato potrebujejo socialno oporo in podporo različnih strokovnih služb. Subjekt raziskovanja so tako tudi strokovnjaki, ki sodelujejo z osebami s CP ter njihovo razumevanje neodvisnosti, potreb posameznika s CP, vrste pomoči in podpore, ki jo lahko ponudijo ter tudi perspektiva za izboljšanje procesa pomoči. Neodvisno življenje razumemo tako, da imajo osebe s CP enak nadzor in enake možnosti izbir v vsakdanjem življenju, ki so drugim ljudem samoumevne. To vključuje odraščanje v njihovih družinah; obiskovanje šole; zaposlitev, ki je skladna z njihovo izobrazbo in sposobnostmi; enak dostop do servisov in ustanov družabnega življenja, kulture in prostega časa. Najpomembnejše pa je, da morajo imeti osebe s CP nadzor nad svojimi lastnimi življenji, in da lahko mislijo ter govorijo sami zase. Teoretična izhodišča zajemajo spoznanja o realnem in imaginarnem položaju oseb s CP, ki skozi različne diskurze ustvarja negativno podobo ljudi z ovirami (vključujoč osebe s CP). Položaj in specifike ljudi s CP neobhodno vplivajo na vsa življenjska področja oseb s CP, tudi in predvsem na vzpostavitev njihovega neodvisnega življenja. V teoretičnih izhodiščih so tako predstavljeni številni dejavniki in ovire, ki pomembno določajo potek življenja in sprejemanje odločitev za neodvisno življenje oseb s CP. Vodilo doktorske disertacije je razmislek o medsebojnem sovplivanju različnih kontekstualnih dejavnikov (razumevanje neodvisnosti, ideologija neodvisnega življenja, družina, proces pomoči, socialna vključenost, izobraževanje, oviranost, zaposlitev, institucionalno okolje, sprejetost v družbi ipd.) ter različnih identitet in družbenih vlog, katere živijo osebe s CP v povezavi z razvijanjem neodvisnega življenja posameznika s CP. Ljudje s CP zasedajo v disertaciji zelo pomembno mesto. Raziskovanje je usmerjeno v razmislek o konstruiranih konceptih pomoči, neodvisnega življenja in oviranosti ter iskanju odgovorov na vprašanja o posameznikovi subjektivnosti, samodeterminaciji in aktivni vlogi v procesih pomoči pri načrtovanju neodvisnega življenja. Namen disertacije je okrepiti glas oseb s CP ter jim dati možnost, da orišejo oz. izpostavijo lastna stališča, izkušnje, potrebe, težave in želje. Hkrati doktorska disertacija predstavlja vpogled v redko slišan glas ljudi s CP, ki spregovorijo na svoj način in v lastnem izrazu. Doktorska naloga podrobneje osvetli tudi ključni oz. temeljni faktor, kateri lahko pomembno doprinese k uspehu oseb s CP pri načrtovanju neodvisnega življenja,- to so strokovnjaki in odnosi, ki jih vzpostavljajo z osebami s CP. Pri raziskovanju se teoretsko opiramo na socialni model obravnave invalidnosti, ki posameznikovo oviro (v našem primeru CP) umešča na raven družbe in zunaj posameznikovega telesa. Kljub temu v disertaciji ne zanemarimo dejstva cerebralne paralize kot gibalne in tudi kognitivne oviranosti, posameznikova oviranost ostaja dejstvo V doktorski disertaciji smo s kvalitativnim raziskovalnim pristopom raziskali ključne elemente za doseganje neodvisnega življenja oseb s CP. S pomočjo pol strukturiranih intervjujev smo raziskali subjektivna mnenja oseb s CP in strokovnjakov glede definiranja neodvisnega življenja, obstoječih potreb in težav, ki vplivajo na posameznikovo življenje, potrebnih kompetenc strokovnih delavcev za ustrezno pomoč osebi s CP v povezavi z neodvisnim življenjem, prepoznanih virov moči oseb s CP, ki lahko pomembno doprinesejo h kvalitetnemu življenju oseb s CP ter pomen in vpliv procesa pomoči, storitev, družine in izobraževanja na neodvisno življenje oseb s CP. Ugotavljamo, da se osebe s CP srečujejo s številnimi težavami in nezadovoljenimi potrebami v povezavi z načrtovanjem neodvisnega življenja. Srečujejo se z neenakovrednim položajem na trgu dela, v izobraževalnem procesu ter pri iskanju primerne oblike bivanja. Osebe s CP so nezadovoljne s storitvami in drugimi oblikami pomoči, ki so jim na voljo, kajti le te se ne izvajajo v skladu s potrebami ter pogosto nimajo dostopa do informaciji, katere storitve in oblike pomoči jim pripadajo in kje organizirati njihovo izvajanje. Osebe s CP so pogosto prezrte, neupoštevane, brez zadostnih prilagoditev in podpore, občutijo stigmatizacijo, izključenost, zaradi omejenih finančnih virov so depriviligirane, nezadovoljne s strokovno pomočjo ter se soočajo s predsodki družbe. Strokovnjaki izpostavljajo potrebo po izobraževanjih in usposabljanjih za delo z odraslimi s CP ter prepoznavajo doprinos vključitve dela s perspektive moči in soustvarjanja rešitev, dobrih izidov ter želenih razpletov v delovnem odnosu v strokovno prakso. Na osnovi izvedene raziskave predlagamo pomoč, ki temelji na sodelovalnem odnosu med strokovnjakom in osebo s CP ter na aktivni vlogi osebe s CP v procesih pomoči. Predlagamo celostni in individualiziran pristop, ki izhaja izključno iz potreb oseb s CP in zajema sodobne koncepta procesa pomoči. Pri oblikovanju predlogov za spremembe v procesih pomoči v povezavi z načrtovanjem neodvisnega življenja oseb s CP smo se opirali na teoretske koncepte: izvirni delovni projekta pomoči, delo s perspektive moči, v rešitev usmerjen pristop ter na koncept razvijanja odpornosti Pričujoča disertacija želi biti korak k pravičnejši družbi, saj razkriva temeljne mehanizme, ki ljudi s CP ohranjajo v podrejenem položaju in jim onemogočajo živeti neodvisno. Pokaže, kako se pokroviteljski odnos odraža v iskanju rešitev, ki se nanašajo na življenje oseb s CP ter kako se zaradi stigmatizirajočega, ambivalentnega odnosa do oseb s CP ter ukoreninjenih predsodkov o osebah z ovirami, izgubi resnični vpogled v življenja ljudi, ki so pravzaprav vsakdanja. Izgubi se glas in pravica osebe s CP do samoodločanja in sprejemanja odločitev v povezavi s posameznikovo interpretacijo potreb in želja. Odsotnost glasu je tako temeljni predpogoj, ki omogoča zatiranje. Družba teži k temu, da ljudi z ovirami. označuje kot»bolne«,»drugačne»oz.»nesposobne«. Pri čemer se posplošeno predpostavlja, da jim ni potrebno delati, izključeni so iz vsakodnevnih življenjskih dolžnosti in tudi marginalizirani. Naš cilj je tako tudi ozaveščanje skupnosti o pravicah državljanov z ovirami, predvsem, da imajo kakor vsi ostali enake pravice do kvalitetnega življenja. Raziskava je ena redkih, ki ljudi s CP v Sloveniji opredeljuje kot subjekt in ne zgolj kot objekt opazovanja. Takšna perspektiva pa omogoči nov pogled in umestitev ljudi, ki so označene kot osebe z ovirami, v družbo.

Jezik:Slovenski jezik
Ključne besede:neodvisno življenje
Vrsta gradiva:Doktorsko delo/naloga
Tipologija:2.08 - Doktorska disertacija
Organizacija:PEF - Pedagoška fakulteta
Leto izida:2022
PID:20.500.12556/RUL-141663 Povezava se odpre v novem oknu
COBISS.SI-ID:124113411 Povezava se odpre v novem oknu
Datum objave v RUL:17.10.2022
Število ogledov:793
Število prenosov:65
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Sekundarni jezik

Jezik:Angleški jezik
Naslov:Independent living of younger adults with cerebral palsy
Izvleček:
The doctoral dissertation analyses persons with cerebral palsy, their daily lives, lack of social power and the decisions they can make, as well as their unmet needs, violated basic human rights, their experience of independent living, stigmatization, social exclusion, and aid processes and support available to them in designing appropriate solutions for their lives. Individuals with cerebral palsy are in a weakened position when establishing independence and when developing self-determination; thus, social support and the support of various professional services are essential for their independence. With this research, the experts who work with persons with cerebral palsy are also the subject of this research. In turn, the research also reflects their understanding of independence and the needs of an individual with cerebral palsy, the types of help and support they can offer, and the perspective for improving the support process. Within this research, the term independent living is considered as a right for all individuals, even persons with cerebral palsy, to have the same control and can make choices in everyday life that other persons take for granted. This includes growing up in their families, attending school; employment consistent with their education and skills; equal access to services and institutions of social life, equal access to culture and leisure activities. Most importantly, persons with cerebral palsy need to have control over their own lives and be able to think and speak for themselves and themselves. The theoretical background of this research includes insights into the real and imaginary position of persons with cerebral palsy, which, through various discourses, creates a negative image of persons with disabilities (including persons with cerebral palsy). The situation and specifics of persons with cerebral palsy inevitably affect all areas of their lives, above all, the establishment of their independent living. Theoretical background also highlights the factors and obstacles that significantly determine the course of life and decision-making regarding independent living of persons with cerebral palsy. The dissertation is formulated based on the reflection of the interaction between various contextual factors (understanding of independence, the ideology of independent living, family, aid process, social inclusion, education, disabilities, employment, institutional environment, acceptance in society, etc.) and different identities and social roles of persons with cerebral palsy in connection with the development of individual's independent living. Persons with cerebral palsy represent the critical stakeholder in the dissertation. The research is aimed at reflecting on artificially constructed concepts of support, independent living, and disability. The research seeks the answers to questions regarding individual subjectivity, self-determination, and the active role of individuals in support processes and in planning their independent living. The purpose of the dissertation is to strengthen the voice of people with cerebral palsy and allow them to draw or highlight their views, experiences, needs, preferences, issues, and desires. With this in mind, the doctoral dissertation focuses on the rarely heard voice of people with cerebral palsy who speak in their way and express themselves uniquely. The dissertation identifies fundamental factors that significantly contribute successful planning of an independent life of persons with cerebral pals through empirical research, as the professionals and social relations they establish and maintain with persons with cerebral palsy. The research is theoretically funded on a social model of disability (in our case cerebral palsy), which places the individual's barrier at the level of society and outside the individual's body. Nevertheless, the dissertation does not neglect the fact that cerebral palsy is a motor and cognitive impairment; the individual’s impairment remains a fact. In the doctoral dissertation, we adopt the qualitative research approach to explore the critical facilitators for achieving independent life for people with cerebral palsy. Using semi-structured interviews, we explore the subjective opinions of people with cerebral palsy and experts regarding the definition of independent living, existing needs, and issues affecting individual's life. We further identify the necessary competencies of professionals to adequately help a person with cerebral palsy and the strengths of people with cerebral palsy, which can significantly contribute to the quality of life of people with cerebral palsy. Finally, we highlight the importance and impact of the process of support, aid services, family, and education on the independent life of people with cerebral palsy. Persons with cerebral palsy are often ignored, and their voices are disregarded. They do not receive sufficient adjustments and support and often feel stigmatized and excluded. Due to limited financial resources, persons with cerebral palsy often feel deprived and dissatisfied with professional help and face society's prejudices. Experts emphasize the need for education and training to work with adults with cerebral palsy and identify the benefits and contribution of their inclusion in the work process from the perspective of power and co-creation, which leads to positive outcomes in the working relationship and professional practice. Based on the results of this research, we propose a new model of assistance and support, which is funded on a cooperative relationship between the experts and the person with cerebral palsy and an active role of the person with cerebral palsy in the processes. We propose a holistic and individualized approach that stems exclusively from the needs of persons with cerebral palsy and covers modern concepts of the support process. In formulating future directions and recommendations for changes in the existing support processes in conjunction with the planning of independent living of people with cerebral palsy, we relied on the theoretical concepts from the Strengths perspective in social work practice,‘Solution Focused Brief Therapy and the Concept of resilience development. The dissertation reveals the fundamental mechanisms that keep people with cerebral palsy in a subordinate position and prevent them from living independently. Thus, it aims to represent a step towards a more fair society. The dissertation highlights how the patronizing attitude is reflected in less-satisfactory solutions for independent living of persons with cerebral palsy. It also identifies how the real insight into the lives of persons with cerebral palsy is distorted due to the stigmatizing, ambivalent attitude towards persons with disabilities and ingrained prejudices. Furthermore, the voices of persons with cerebral palsy and their right to self-determination and decision-making in conjunction with their interpretation of their needs and their desires are too often overlooked and disregarded. The absence of their voice represents the fundamental precondition for repression. Society tends to label persons with disabilities as»sick",»different,»or»incompetent.»It is generally assumed that persons with disabilities do not need to work and are thus often excluded from daily life duties, in many cases even marginalized. Our goal is also to make the community aware of the rights of citizens with disabilities and that their rights to quality of life are equal to those of everyone else. The research is one of the few that observes persons with cerebral palsy in Slovenia as subjects and stakeholders and not only as mere objects of observation. Such a perspective enables a new understanding of persons with cerebral palsy and fair integration of persons who are labeled as only barriers into society.

Ključne besede:independent living

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