Living with schizophrenia: A phenomenological study of people with schizophrenia living in the community.

Abstract

Research question: How do you people with schizophrenia and their carers live with a diagnosis of schizophrenia? Research aim: To gain a greater understanding of the meaning and experience of schizophrenia. The objective of this phenomenological study was to explore the lived experience of schizophrenia. Sample: Self-selected sample of 35 participants (22 people with schizophrenia and 13 carers) recruited from the local community. . Data collection: 33 unstructured audiotaped interviews conducted in participants¿ own homes. In addition some participants completed diaries. Interviews were conducted in two stages: in stage one 10 participants were interviewed, transcripts were analysed and probes were fine tuned and in stage two these probes were used in the remaining interviews. Data analysis: Verbatim transcripts were analysed using the coding paradigm proposed by Strauss (1987), in conjunction with Burnard¿s (1991) 14 stage model of analysis. Inductive coding was used and respondent validation was completed. Findings: Stress was described as a major cause of schizophrenia. Some participants with schizophrenia described moving on in their lives, a factor associated with having a positive self-concept. Other participants with schizophrenia reported feeling stopped in their lives, which was associated with acceptance of the diagnosis, and having a negative self-concept. The most severe problems they reported were social and psychological. Male and female participants with schizophrenia were treated differently. Some participants with schizophrenia sought support while others chose isolation. Mental health nursing care was reported as coercive and disempowering. Carers described conflict within families, carer burden, and stress. Those who had been caregiving for longer appeared to have adapted and now experienced less stress and burden than others. Younger carers and carers who have been caregiving for a shorter time and were less willing to accept the caregiving role, reported more burden and stress. Conclusions: These findings suggest that a positive self-concept may be necessary to move on after the diagnosis of schizophrenia. The inability to move on may be a result of a negative self-concept or disempowering care. There was no partnership and no shared understanding of schizophrenia, or of care, between these participants with schizophrenia and nurses, or between these participants with schizophrenia and their carers, or between carers and nurses. Many of the participants¿ self-identified needs were not met. A new attitude displaying reluctance about a caregiving role may be emerging.