Self-perception of the quality of life of institutionalized persons with disabilities

U zemljama koje su ratificirale Konvenciju UN-a o pravima osoba s invaliditetom i njen Fakultativni protokol (među kojima je i Republika Hrvatska), dosadašnja istraživanja o primjeni Konvencije, odnose se uglavnom na legislativnu primjenu, dok su kvalitativna istraživanja, s naglašenom iskustvenom perspektivom osoba s invaliditetom, njihovih obitelji, stručnjaka i drugih važnih dionika mreže podrške vezana uz uključenost u zajednicu osoba s intelektualnim i drugim poteškoćama rjeđa na globalnoj i na nacionalnoj razini. Ovaj rad želi steći dublji uvid i potpunije razumijevanje (samopercepcijom) osobnih iskustava i doživljaja kvalitete življenja u instituciji osoba s invaliditetom te istražiti u kojoj mjeri rehabilitacijski programi, aktivnosti slobodnog vremena i programi psihosocijalne podrške u instituciji, iz perspektive korisnika, predstavljaju važne resurse za osiguranje mentalnog i fizičkog zdravlja, dobre kvalitete življenja, uključivanje u život zajednice korisnika usluge smještaja. U istraživanju se za prikupljanje primarnih podataka primjenjuje pristup triangulacije kvalitativnih metoda na deskriptivnoj razini (photovoice i polustrukturirani intervju). Za prikupljanje sekundarnih podataka iz literature korištene su desk metode analize i sinteze, a obrada rezultata učinjena je induktivna analiza sadržaja. Istraživanje je provedeno tijekom ožujka 2022. godine na namjernom uzorku korisnika Centra za rehabilitaciju Varaždin, koji obuhvaća osobe s intelektualnim poteškoćama, od kojih je jedna osoba lišena poslovne sposobnosti (N=3; Ž=3) i osobe s tjelesnim invaliditetom (N=3; Ž=1). Kreirani instrumentarij se sastoji od obrazaca informiranog dobrovoljnog pristanka ispitanika i skrbnika; digitalnog obrasca iskustvenog dnevnika (kojim su putem e-maila prikupljane fotografije i opisi fotografija od sudionika) te od protokola polustrukturiranog intervjua. Rezultati dobiveni analizom odgovora u obje metode na ovom uzorku identificiraju lepezu uspješnih formalnih oblika podrške u Centru (samorefleksijom) kao dobrih resursa za pozitivno samopoimanje i samoosnaživanje ispitanika te ujedno i njihove vidljivosti i uključenja u aktivnosti zajednice. Međutim, u pogledu iskustvene perspektive kvalitete življenja u instituciji na ovom uzorku, gdje, čini se, nisu zadovoljene neke osnovne potrebe, valja istaknuti izlučenu dihotomiju rezultata. Pozitivna iskustva vežu uz sitna svakodnevna uživanja, omogućenu pristupačnost i ostvarenu neformalnu podršku (prijatelji). Međutim, prisutne fizičke barijere, nedostatno razvijena socijalna mreža (izvan kruga obitelji), nezadovoljstvo zbog ograničenih mogućnosti institucije u poduzimanju mjera u cilju otklanjanja neprimjerenog ponašanja jednog dijela osoblja te narušavanja intime u uvjetima nužnog suživota s drugim korisnicima, ukazuju na nižu razinu kontrole ispitanika nad vlastitim životom i na postojanje osjećaja samostigmatizacije pojedinih ispitanika. Zabilježeno je i iskustvo neprimjerenog kontakta prema osobi s invaliditetom od strane liječnika sekundarne zdravstvene zaštite (u bolnici). Zaključno, izlučenim rezultatima na razini ovog uzorka dobiveni su novi uvidi i spoznaje o stvarnoj kvaliteti življenja, odnosno, o razini prihvatljivosti različitih oblika institucionalne podrške osoba s invaliditetom u kontekstu generiranja aktivnih resursa podrške, ostvarivanja njihovih punih potencijala i uključivanja u život zajednice. Nadalje, u ovom radu je uspješno demonstrirana primjena photovoice metode u provedbi istraživanja s osobama s invaliditetom (koje žive s fizičkim oštećenjima i intelektualnim poteškoćama), koja je im je pružila priliku da osvijeste neke nove dimenzije svoje svakodnevice u instituciji, da s više samopouzdanja komuniciraju međusobno i s osobljem o svojim željama i potrebama; da pričaju priče zanimljive iz njihove percepcije, da se njihov glas čuje izvan institucije te im je otvorila neki novi horizont znatiželje i pozitivnih očekivanja u vezi budućih, još nedoživljenih iskustava. S obzirom na sve navedeno, ovo istraživanje se može ubrojati u primjere dobre prakse i poslužiti kao kvalitetna osnova za daljnja istraživanja u navedenom području te kao smjernice institucijama za konkretne korake u cilju iniciranja promjena u univerzalnom dizajnu i u nekim aspektima formalne podrške koju pružaju svojim korisnicima.In the countries that ratified the Convention on the Rights of Persons with Disabilities and the Optional Protocol (among them Croatia), the so far research on the implementation of the Convention is mainly focused on legislative activities, while qualitative studies that rely on personal accounts, and give the experiential perspective of the persons with disabilities, their families, experts, and other significant partners in the network of support, the research which is related to social inclusion of the persons with intellectual or other disabilities, is comparatively rare on a global and national level. This study aims to gain a deeper insight and a greater understanding (through self-perception) of institutionalized users with disabilities personal experiences and views related to the quality of living in the institution. The study also aims to investigate to what extent the role of the rehabilitation program, free time activities, and the programs of psychological support and social assistance within the institution are from the user's perspective, essential resources that can guarantee mental and physical health, good quality of living and user's integration into the local community. In the research process, the triangulation of the qualitative methods on the descriptive level (photovoice, semi-structured interviews) is used to collect primary data. For collecting secondary data from the literature, desk research analysis and synthesis methods are used, and for the evaluation of the results, inductive content analysis. The research was carried out in March 2022 on the intended sample of the users of The Rehabilitation Centre Varaždin, which comprises persons with intellectual disabilities, one of them deprived of legal capacity (N=3; F=3), and persons with physical disabilities (N=3; F=1). The created tools consist of the informed consent form for the examinees or their legal representatives, digital form of experiential diary (used for collecting research participants taken and described photos), and the semi-structured interview protocol. The results obtained, in both methods, on this sample through the analysis of the answers identify an array of successful models of formal support in the Centre as good resources for positive self-perception and empowerment of the examinees, also increasing their visibility and integration into the activities of the community. However, concerning the experiential perspective of the quality of life in the institution, in this sample, it seems that this quality does not meet some basic needs of the users, and it is essential to point out the evidence of the dichotomy between the results. Positive experiences are related to some small daily pleasures, enabled accessibility and realised informal support (friends). Nevertheless, some still present physical barriers, insufficiently developed social network (outside the family), dissatisfaction with the limited possibilities of the institution to take measures aimed at eliminating inappropriate behaviour on the part of some members of the staff, and invading privacy in the condition of necessary cohabitation with other users, indicate a lower level of control the users have over their own lives and gives the feeling of self-stigma among some of them. The experience of inappropriate behaviour on the part of a medical doctor in the secondary healthcare services (in a hospital) has also been reported. In conclusion, the obtained results on this sample size give the new insight and understanding of the actual quality of life, namely the level of the acceptance criteria for the various forms of the institutional support offered to persons with disabilities in the context of generating active support resources, realizing their potential to the full, and integration to community. Furthermore, the study successfully demonstrates the use of the photovoice method in researching persons with disabilities (persons who live with physical impairment and intellectual disabilities). The photovoice method allows them to become aware of the new dimensions of their everyday life in the institution. It helps them to be more self-confident while communicating with the staff and among themselves about their wishes and needs. They become more self-confident in telling stories they perceive as amusing and let their voice be heard outside the institution. This photovoice method even opens some new horizons of curiosity and positive expectations about future, still unknown experiences. In this context, this research can be counted among the examples of good practice and could serve as a solid foundation for further research in the given field as well as the guidance to institutions to take concrete steps towards initiating changes in the universal design but also in some aspects of their formal support to users