Being in a fragmented and isolated world: interviews with carers working with a person with a severe autistic disorder.
OBJECTIVE
To illuminate the meaning of being a carer for a person with a severe autistic disorder.


BACKGROUND
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Hellzen
Ove
O
Department of Nursing and Health Sciences, Mid-Sweden University, Sundsvall, Sweden. ove.hellzen@vav.mh.se
Asplund
Kenneth
K
D000328:Adult; D001321:Autistic Disorder / Q000451:nursing*; D017028:Caregivers / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D009726:Nurses / Q000523:psychology*; D011936:Reality Testing; D012866:Skilled Nursing Facilities