| Abstract [eng] |
Relevance of the Thesis. The transformation of institutional care in Lithuania directly affects people with psychosocial disabilities and their relatives. To ensure this reform meets real community needs, it is crucial to assess their attitudes and expectations. Due to the lack of such studies in Lithuania, this research aimed to evaluate relatives’ perspectives on their own and their disabled family members' needs, as well as their expectations and fears regarding deinstitutionalization. Objectives. Based on demographic and social factors, the study aimed to assess relatives’ views on: (1) the services lacking for people with psychosocial disabilities, (2) services lacking for relatives, (3) expectations, and (4) fears related to the ongoing transformation of institutional care. Methodology. Surveys were conducted among relatives living with persons with psychosocial disabilities: 325 in 2016, 367 in 2019, and 324 in 2022. A Chi-square test was used to analyze the relationship between socio-demographic variables and participants' responses to open-ended questions on service needs, expectations, and fears. Results. 1)Between 2016 and 2022, the perceived lack of healthcare services declined more in rural areas (from 38% to 11.5%) than in urban areas (43% to 33.7%). Transport service shortages in rural areas dropped from 90% to 10%, while in cities it remained stable (~31%). Employment service needs decreased among those caring for people with mild disabilities (73.5% to 26.5%) but increased among those caring for severely disabled individuals (37% to 63%). Those caring for children saw reduced shortages in health, employment, and personalized services, while caregivers of adults saw little or no improvement. 2)In 2022, 24.1% of urban respondents reported a lack of social support, compared to 8.1% in rural areas. Transport services became more accessible in rural regions (shortage dropped from 69.2% to 0%), but urban shortages persisted (50%). Lower-income respondents identified fewer service shortages, while higher-income respondents reported more. Caregivers of adults reported greater shortages of information, social support, and caregiving assistance. 3) Positive expectations about the transformation declined among low-income respondents (from 59.5% to 9.5%) and child caregivers (from 73% to 0%). Expectations of positive societal attitudes and high-quality services among caregivers of children with neurological disabilities also vanished (from 100% and 85.7% to 0%). 4)Fears related to service shortages were common among older respondents in 2016 and 2022 (37.5% and 50%) and younger respondents in 2019 (71.4%). In 2016, 100% of respondents with higher education feared for the security of people with disabilities, but this fear was not expressed in 2022. Fear of poor information dissemination was high in 2019 among caregivers of people with mild disabilities (100%) and in 2022 among those caring for severely disabled relatives (100%). Conclusions. Relatives most often reported a lack of healthcare, employment, respite care, personalized, and transport services for their disabled family members, and a lack of social support, caregiving help, and medical services for themselves. Service needs decreased among younger, rural, lower-income and less-educated respondents caring for children or individuals with mild disabilities. However, they increased among caregivers of adults and those with severe disabilities. Positive expectations regarding institutional care reform declined significantly among low-income and child caregivers. Common fears included insufficient services, poor communication, and safety concerns, especially among older respondents and those caring for severely disabled individuals. |
