The Life Course of People with Intellectual Disabilities and Their Experiences of the Processes of Deinstitutionalization

Šajfar, Petar (author), Zaviršek, Darja (mentor)

Every person with an intellectual disability has a unique life course influenced by various life events. In exploring life stories, “we can ascertain some of the key structural patterns that have shaped (their) experiences” (Henderson & Bigby, 2019:421). In post-socialist countries, the deinstitutionalization processes began to intensify much later compared to some Western countries. In Croatia, the turning point was in 2014, with the commencement of mass relocations of people with intellectual disabilities from long-term institutions to group homes. The aim of this research is to identify the life course perspective of deinstitutionalized people with intellectual disabilities with an emphasis on institutionalization and deinstitutionalization. The research was conducted as a qualitative, ethnographic approach. The data collection methods used facilitated observation and semi-structured interviews. A purposeful sample was used comprising 27 participants, who are users of 11 providers of group home services. Analysis of the data relies on thematic analysis, and the final result is a reflection between the collected data, the context in which it was created and the existing literature (Altheide, 1987; according to Grbich, 2013). A number of ethical aspects have been taken into account. The research results indicate that the life course of people with intellectual disabilities is largely marked by numerous unpleasant events, such as the death of parents and health problems, which also proved to be crucial for their later institutionalization. While participants cited moving to an institution as an important life event, as it greatly changed their lives, once deinstitutionalized, it was no longer an important event because nothing had changed in their lives. Everyday life in group homes differs from that in typical long-term institutions, though clear patterns of institutional culture remain. In terms of the future, most participants expressed modest plans, but the potential threat of reinstitutionalization exists.

• Language: English
• Keywords: deinstitutionalization, group homes, intellectual disabilities, life course, social work
• Work type: Doctoral dissertation
• Organization: FSD - Faculty of Social Work
• Year: 2024
• PID: 20.500.12556/RUL-154120
• Publication date in RUL: 26.01.2024

Secondary language

• Language: Slovenian
• Title: Življenjski potek ljudi z intelektualnimi ovirami in njihove izkušnje s procesi deinstitucionalizacije

Abstract

Vsaka oseba z intelektualnimi ovirami ima edinstveni življenjski potek, na katerega vplivajo različni življenjski dogodki. Z raziskovanjem življenjskih zgodb oseb z intelektualnimi ovirami »lahko ugotovimo nekatere ključne strukturne vzorce, ki so oblikovali (njihove) izkušnje« (Henderson & Bigby, 2019:421). Post-socialistične države pričenjajo s intenziviranjem deinstitucionalizacijskega procesa veliko pozneje kot nekatere zahodne države. V kontekstu Hrvaške za prelomno velja leto 2014, ko se začnejo številčnejše selitve uporabnikov storitev iz različnih institucionalnih oblik skrbi v stanovanjske skupine. Cilj trenutne raziskave je ugotoviti perspektivo življenjskega poteka deinstitucionaliziranih oseb z intelektualnimi ovirami s poudarkom na procesih institucionalizacije in deinstitucionalizacije. Raziskava je bila izvedena s kvalitativnim, etnografskim pristopom. Uporabljene metode zbiranja podatkov so bile opazovanje in delno strukturirani intervjuji. V namensko vzorčenje je bilo vključenih skupno 27 udeležencev in udeleženk, ki so uporabniki 11 ponudnikov storitev stanovanjskih skupin. Analiza podatkov se naslanja na tematsko analizo, končni rezultat pa je refleksija med zbranimi podatki, kontekstom, v katerem so bili pridobljeni in obstoječo literaturo (Altheide, 1987 po Grbich, 2013). Upoštevani so bili številni etični vidiki. Rezultati raziskave kažejo, da je življenjski potek oseb z intelektualnimi ovirami v veliki meri zaznamovan s številnimi neprijetnimi dogodki, kot so smrt staršev in zdravstvene težave, ki se hkrati izkažejo za ključne za kasnejšo institucionalizacijo. Medtem ko so udeleženci in udeleženke selitev v institucijo navajali kot pomemben življenjski dogodek, ki jim je močno spremenil življenje, pa deinstitucionalizacija zanje ni bila tako pomemben dogodek, saj se v njihovem življenju ni veliko spremenilo. Vsakdanje življenje v stanovanjskih skupinah nekoliko razlikuje od tistega, ki je značilno za institucionalno okolje, čeprav so še vedno zelo jasni vzorci institucionalne kulture. Udeleženci in udeleženke glede prihodnosti izražajo skromne načrte, potencialna nevarnost ponovne institucionalizacije pa ostaja.

• Keywords: deinstitucionalizacija, stanovanjske skupine, intelektualne ovire, življenjski potek, socialno delo