Being in a fragmented and isolated world: interviews with carers working with a person with a severe autistic...

To illuminate the meaning of being a carer for a person with a severe autistic disorder.

Carers working with people with severe autism are occasionally exposed to residents' self-injurious behaviours and violent actions and at time residents appear resistant to all forms of treatment.

A qualitative case study was conducted. Six Swedish carers enrolled nurses (ENs), working on a special ward in a nursing home were interviewed about their lived experiences when caring for an individual with a severe autistic disorder. Narrative interviews were conducted and interpreted using a phenomenological-hermeneutic method inspired by Paul Ricoeur.

Two themes were formulated which describe the carers' reality and their dream of an ideal. This ideal described carers' experiences of being trapped in a segmented and isolated care reality and their longing to achieve a sense of wholeness. The findings were interpreted and reflected on in the light of a framework inspired by the German philosopher Karl Jaspers in order to achieve a deeper understanding of the text.

In their desperation, the carers used their empirical knowledge based on scientific knowledge, which could be understood as a substitute for their vision of a consolating wholeness. This paper shows that searching for a substitute to consolation seems to be an important aspect of the meaning of being a carer for a person with a severe autistic disorder.