Vardagslivet i bostad med särskild service med institutionell prägel - en studie av personer med intellektuell funktionsnedsättning och personalens erfarenheter

• Main Author: Berlin Hallrup, Leena
• Format: Others
• Language: Swedish
• Published: Linnéuniversitetet, Institutionen för hälso- och vårdvetenskap, HV 2012
• Subjects: adults with intellectual disabilities; care; care workers; ethnography; institutional care setting; Sweden
• Online Access: http://urn.kb.se/resolve?urn=urn:nbn:se:lnu:diva-21334; http://nbn-resolving.de/urn:isbn:978-91-86983-74-1

The general intention of recent Swedish legislation concerning adults with intellectual disabilities has been to provide care and support for this group in small settings in the community. It has been shown that adults with intellectual disabilities are better equipped to exert influence over their own care and support when living in group homes in the community and other forms of independent living as opposed to large institutional settings. Recent research on this group has to a great extent concerned the study of how life is in small group homes for this group and has highlighted obstacles preventing them from participating in society. Previous research has indicated that living in institutional settings makes it difficult for them to exert influence on their lives. A small number of large institutional care settings still exist, however, in Sweden and there is a dearth of research that focuses on how adults with intellectual disabilities experience everyday life in such settings. In addition, little research has been carried out on the role of the care workers who work in such settings. The aim of this research has thus been to describe the experiences of adults with intellectual disabilities and care workers of living and working in an institutional care setting in Sweden.   An ethnographic approach including participant observation and in-depth interviews was used to gain a deeper understanding of how adults with intellectual disabilities and staff experience their everyday life in an institutional care setting. The result showed that the residents experienced;  I) a sense of belonging, which was connected to having access to a private sphere and being part of social togetherness;  II) a feeling of insecurity in relation to other residents and care workers;  III) a longing for independence and a desire to get away. The study of the staff revealed three main themes that represent their approach; I) creating a family-like atmosphere; II) making the everyday life ordered and structured; III) being exposed to stress factors.   The results revealed the importance of paying close attention to what adults with intellectual disabilities and their care workers have to say about their everyday lives when living and working in an institutional care setting. It may be concluded that adults living in an institutional care setting experience their everyday lives in existential terms such as belonging, insecurity and longing. For caring science and in caring practices of people with intellectual disabilities, it is not satisfactory that residents experience such an insecure existence in a care setting. In order to provide individual care and support, staff need to be more open and vigilant as to the residents’ vulnerability and be able to guide them in matters  concerning emotional aspects. It was seen that care workers in their everyday work with residents in an institutional care setting used experiences from their personal lives in situations where they lacked formal care training. Such experiences may have helped to create meaningfulness but at the same time risked preserving inequality and gender stereotyping. In order to avoid these risks care workers should receive clear directives from the management about the care objectives, and guidelines about how best to care for adults with intellectual disabilities and offer them individualized care. Furthermore, it also became evident that care workers need additional support, training and opportunities for reflection to cope with their complex work situation. The results of this research can contribute to a greater insight and deeper knowledge of what adults with intellectual disabilities experience in an institutional care setting in the 2000’s , enabling the staff and management to further enhance the well-being for this group of individuals. The findings can provide feedback to staff, managers and researchers working in the intellectual disabilities field.   Keywords: adults with intellectual disabilities, care, care workers, ethnography, institutional care setting, Sweden