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Nursing Ethics
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Ethical Values in Personal Assistance: Narratives of People with Disabilities

Barbro Wadensten

Uppsala University, Uppsala, Sweden, barbro.wadensten{at}pubcare.uu.se

Gerd Ahlström

Jönköping University, Jönköping, Sweden

The aim of this study was to investigate the experiences of persons with severe functional disabilities who receive personal assistance in their homes, the focus being on their daily life in relation to the ethical principles represented in the Swedish Disability Act: autonomy, integrity, influence and participation. Qualitative interviews were performed with 26 persons and thereafter subjected to qualitative latent content analysis. The experiences of personal assistance were very much in accordance with the said principles, the most important factor being that one is met with understanding. The participants described situations in which their integrity was violated in that they were not treated as competent adults. This indicates the importance of future efforts in nursing to support personal assistants with ethical knowledge and supervision so that they can empower people with disabilities and thereby enable them to maintain their self-esteem and dignity.

Key Words: autonomy • chronic disease • ethics • integrity • participation • personal assistance services

Nursing Ethics, Vol. 16, No. 6, 759-774 (2009)
DOI: 10.1177/0969733009341913
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