| Abstract [eng] |
Today, adults with disabilities make up 9% of the total population. About 32 686 people with disabilities need constant care. The authors note that in order to improve the integration of people with disabilities in society, it is necessary to take strategic goals by improving the accessibility of social services through the provision of community services in society. According to "the Activity Report of the Departament for the Affairs of the Disabled under the Ministry of Social Security and Labour for 2020" (2021), a total of 20 315 adults with disabilities and only 1 969 family members received various services during various projects. The need for help for families remains relevant, as confirmed by research conducted by B. Kreivinienė and J. Perttula (2011) and other researchers, which revealed that parents' opinion about state support for families raising people with disabilities is negative, because for such families with difficulties, state aid is insufficient. Analyzing the internal coherence of the family, the researchers state that the changes affecting the internal coherence of the family are determined by the birth of a child with a disability, his care, social exclusion, stress. Authors J. Ruškaus (2002), A. Petrauskienė, V. Kudarauskienė (2019) emphasize the need for family support aimed at improving the psycho-emotional health of parents. The role of the social worker is highlighted in the provision of family support. The results of the research conducted by the researchers revealed that support for the family from specialists is more important than from friends or relatives. Object of the research. Social work with a family caring for an adult with a complex disability: a discourse of inner harmony. The aim of the research - to find out the discourse of inner harmony of families looking after an adult with a complex disability. Research objectives: 1. To discuss the possibilities of institutional assistance for people with disabilities in today's perspective. 2. Analyze social work with a family caring for an adult with a complex disability through a discourse of inner harmony; 3. To find out the discourse of inner harmony of families looking after an adult with a complex disability. Research methods: analysis of scientific literature, qualitative research with semi-structured interview method, qualitative content analysis. Research results. The results of the qualitative research after analyzing the interview data revealed that the internal harmony of the family was influenced by the birth of a child with a disability, preliminary diagnosis, change of residence in order to socialize a child with a disability, parental divorce, incompetent behavior of medical staff. Parents caring for a child with a disability experienced social exclusion, lacked social support from relatives, and experienced financial difficulties. The study revealed that no social services were offered to parents because there was no social worker at the time the child with a disability was born. The internal harmony of the family was influenced by limited financial opportunities, negative public attitude, and lack of specialized educational institutions. The main support for the family was provided by providing medical assistance in consultation with a neurologist. The main sources of help are the efforts of the caregivers themselves and the desire to help the child with a disability. Sacrifice, taking on the main role in the care of a child, suppressing feelings, giving up ones needs, disagreements in the family, based on various authors and research, are the main reasons for the impact of stress experienced by carers on inner harmony. The results of the research show that the assistance of a social worker as a specialist was started after the establishment of a day centre. Depending on the child's age, family members started using the services of day centres after learning about them from medical staff and educators working in educational institutions. Today, adults with disabilities strengthen their social and work skills with the help of a social worker. Respondents identify a social worker as an opportunity to help the family. However, more than half of respondents today still feel feelings of commitment, guilt, fear, anxiety. The results of the study revealed that nowadays families lack social support, the possibilities of help for the family remain limited, which is confirmed by the results obtained during the study. One in eight respondents received a call from a social worker from a medical institution to find out if a person needed any help. The participants of the study singled out the temporary respite service as a possibility, which is relevant for more than half of the respondents today. The results of the study revealed that families born with a child with a disability faced similar problems with caring for a child with a disability in childhood. The problems were related to the availability of services, medical care. The current situation in the opinion of the respondents has changed, but the consequences of stress in the respondents' experiences are still being felt. Today, when providing social services to the state, parents use social day and short-term social care services up to 5 days a week. The results of the study revealed that today parents have the opportunity to work, to partially meet their needs. Respondents’ stories revealed that parents experience stress, despair, fear for the continued health of the person being cared for and anxiety. Caregivers are worried about the future of the person with a disability. Caring for an adult with a complex disability requires daily care, which has become a daily routine for parents. The basic needs of the family are associated with rest, socialization in society, but the needs of the care recipient are a priority in some of the respondents' stories. When it comes to family needs, dreams always go back to caring for an adult with a disability. Feelings of guilt, worry, anxiety are noticeable in the parents’ stories. Three of the eight respondents named that the stress they experienced affected their psycho-emotional health. The parents’ narratives reflect the main existential crisis currently being experienced, which manifests itself in fears about the future of the care recipient with a complex disability. |
