Aims and objectives. This study describes the meaning of the lived experiences of adults with intellectual disabilities in a Swedish institutional care setting. Background. Despite the general intention of the Swedish law to give care and support for adults with intellectual disabilities in small settings in the community, large institutional care settings exist in Sweden. It is also known that adults with intellectual disabilities have more influence over their care and support when living in small settings than in large institutions. There is a dearth research in regard to studies that focus on how adults with intellectual disabilities experiences their everyday life in such settings. Design. A qualitative design was used to gain a deeper understanding of the lived experiences of adults with intellectual disabilities in an institutional care setting in Sweden. Methods. Fieldwork from September 2006 to June 2009 in an institutional care setting including participant observation and in-depth interviews with 12 residents was used. Verbatim-transcribed text was analysed using a phenomenological reflective lifeworld approach. Results. The essential picture of the phenomenon was experienced 'as a meaningful and meaningless existence' and was reflected in residents' descriptions of their everyday life in the setting. It was characterised by the constituents: ambiguous dependency, social interactions and everyday life in a restricted area. Conclusion. The results reveal the importance of paying close attention to what adults with intellectual disabilities have to say about their everyday life when living in an institutional care setting. For caring practices of people with intellectual disabilities, it is scarcely satisfactory that residents experience an ambivalent dependency and of having to live in a restricted area. Relevance to clinical practice. The results of this study contribute to better insight and deeper knowledge of the lived experiences of adults with intellectual disabilities, enabling the staff and management to further enhance the well-being for residents. In addition, the findings provide feedback to staff, managers and researchers working in the intellectual disabilities field.

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

Despite the general move to support people with learning disabilities in their own homes or in home-like settings, many institutional settings still exist and little research has been carried out on the role of the care workers who work in them. In this study, participant observations over a 16-month period describe care workers’ experiences of working in an institutional care setting in Sweden, and 18 care workers were interviewed. The three main themes to emerge from the thematic analysis were: care workers were engaged in creating a family-like atmosphere; they were engaged in making the everyday ordered and structured; and they were exposed to stress factors. It became evident that care workers need additional support, training and opportunities for reflection to handle their complex work situation.

The purpose of this qualitative study was to explore the lived experience of fall risk from a life-world perspective in elderly women with previous fragility fractures. Thirteen elderly women with a high risk of fall and fracture, aged 76-86, living in their own homes in rural areas, were recruited from a voluntary fracture prevention programme. All women had a history of fragility fractures and were interviewed in their homes from spring to autumn 2004. A phenomenological reflective life-world approach was chosen to analyse in-depth interview data. The study was conducted within an interdisciplinary research group inspired by dialogical research. Elderly women's life space has been narrowed due to advanced age, physical injury or by efforts to prevent new injuries leading to changes in self-perception. However, the women seek strategies to challenge limitations and insecurity, and strive to retain mobility and daily life routines. The four major constituents of the phenomenon 'elderly women's experiences of fall risk' emerged in this study: a changing body, living with precaution, ambiguous dependency and influence and need for understanding. Employing the women's thoughts and resources in trust-based dialogues with caregivers may strengthen their concord and the prospects to continue an active life. Elderly women seek strategies to challenge limitations and feelings of insecurity, and strive to maintain mobility and daily life routines. A trust-based care respecting the preferences of the women seemed to stimulate behavioural change in maintaining an active life.