INTRODUCTION

Schizophrenia is a severe mental illness that can affect every facet of a person’s life. In the past schizophrenia was viewed as an inevitably deteriorating disorder marked by declining ability to live and participate in the community. However, people who have had an acute episode of schizophrenia often recover from that episode and for people who do not fully recover, or go on to have further episodes, their life is not necessarily marked by deterioration. This chapter will discuss the causes and course of schizophrenia, and its impact on quality of life. A focus of this chapter is the effect of stigmatisation and self-stigmatisation, as well as a focus on the recovery process and what this means for the delivery of mental health services and the role of the nurse.

DESCRIPTION OF THE DISORDER

Schizophrenia is a severe mental illness marked by psychotic phenomena such as hallucinations and delusions. The person has difficulty identifying reality, thinking, communicating, managing emotional responses and making judgements to the extent that the person’s ability to function is impaired. Although the prevalence of schizophrenia varies, the World Health Organization (WHO) suggests that one in 100 individuals will develop schizophrenia, with the onset being usually between 15 and 25 years of age (Treatment Protocol Project, 1997).

THE DIAGNOSIS OF SCHIZOPHRENIA

Schizophrenia is diagnosed in the presence of at least two of the following symptoms: hallucinations, delusions, disturbance of speech, disorganised behaviour, negative symptoms. In addition, the presence of these symptoms is accompanied by disruption to social and occupational functioning and the duration of the symptoms and dysfunction is at least six months, although if treated this may be shorter. Other disorders, such as mood disorders, substance abuse and physical illness, need to have been ruled out.

WHAT CAUSES SCHIZOPHRENIA

Schizophrenia appears to be caused by the interaction of a number of factors (Warner, 2004). Factors that have been implicated in vulnerability to develop schizophrenia in the individual include genetic predisposition, exposure to intrauterine infections, birth trauma, head injury in childhood and communication patterns in the family. In addition, environmental stress, such as change in role or relationships or drug use, is believed to work with the vulnerability to precipitate the psychotic episode. A number of protective factors may mitigate the impact of the vulnerability and environmental stress (Treatment Protocol Project, 1997). People with good pre-morbid functioning in a number of areas such as relationships and employment tend to have better outcomes (Warner, 2004).

THE COURSE OF SCHIZOPHRENIA

SCHIZOPHRENIA AND CHRONICITY

Chronicity has been associated with schizophrenia since Kraepelin, in 1896, classified a group of mental disorders as dementia praecox and predicted that the recovery rate for this disorder was between 2.6% and 4.1%. Bleuler, in the early 1900s, further developed the definition of the illnesses, labelled them ‘the schizophrenias’, identified primary and secondary symptoms and also suggested that people never fully recovered (Corin, 1990). The pervasiveness of these views on the thinking about schizophrenia has been evidenced in medical diagnostic manuals and textbooks (Harding et al 1987; McGorry, 1992).

This view of schizophrenia, as an inevitably chronic illness, has since been questioned in long-term follow-up studies and it has been suggested that the course of the illness is sensitive not only to biological vulnerability but also to social development, culture, social networks and stress and coping (Mueser et al, 2006). Coping with the effects of the illness is compounded by the fact that people with long-term mental health problems face additional difficulties in coping with social systems. People with chronic schizophrenia have lives that are often marked by stress and impoverishment. Problems relate to role transition, living arrangements and financial concerns, as well as loneliness and difficulty in negotiating satisfactory relationships. Even in the face of an unhelpful social context, people with long-term mental illness have been shown not to inevitably decline into a deteriorating condition.

EFFECT OF SCHIZOPHRENIA ON THE ACTIVITIES OF DAILY LIVING

Schizophrenia can have a huge impact on the activities of daily living and all parts of the person’s life are likely to be affected by the experience of having a psychotic illness. The difficulty of living with a mental illness such as schizophrenia is one of dealing with ongoing symptoms, managing the problems of medication and other treatments, and suffering alienation, isolation and loneliness. Relating to others is difficult in that although there may be a need for contact with people there may also be a fear of closeness and the problem of managing the stress that closeness might create.

The extent of difficulties related to activities of daily living depends not solely on the severity of the illness, nor on the residual symptoms but also on the extent of developmental delay caused by the onset of the illness. Young people who develop psychotic illness may not have well-developed social and practical skills for daily living prior to the onset of the illness. Poor judgement and disordered thinking patterns make daily decision-making difficult.

Thus, the person with schizophrenia may need support for and education about organising hygiene, clothing, shopping, cooking and house-cleaning, managing finances, developing social relationships and managing time. Employment may present a huge difficulty and many people with schizophrenia are unemployed even when they wish to work. When they do have employment they may need support related to the management of medication and work, and disclosure of their health status.

STIGMA AND SCHIZOPHRENIA

Stereotyping is a way of organising information about groups of people. It can be positive and can be a quick way of communicating about a particular group. Stigmas are stereotypes that hold negative connotations about a group. There are a number of negative stereotypes associated with mental illness and particularly with schizophrenia. Beliefs that mental illness is a lifelong, deteriorating disease, that people with mental illness are violent, and that people with mental illness cannot live on their own, or hold a job, or be in a relationship pervade thinking about people with mental illness. These stereotypes are perpetuated by media reports that link mental illness with violence, fear, need for exclusion, or need for patronising care (Corrigan, 1998). Stigma leads to discrimination such as in housing, employment, health services and relationships (Warner, 2004). The social messages inherent in the stigma are powerful and strongly linked with poor self-image, a lack of self-esteem and self-stigmatisation.

Vauth et al (2007) found that even when recovery from overt psychotic symptoms was good, people with schizophrenia perceived high levels of stigmatisation and devaluation. The authors found that participants in their study used withdrawal and secrecy as ways to manage anticipated discrimination and that these ways of coping affected self-image and led to self-stigmatisation.

IMAGE OF SELF

The effect on the sense of self of a person who develops schizophrenia may be one of the most profound effects of the illness. The onset of the illness presents an experience that is inexplicable to the person. The experience of hallucinations, perceptions of the world that are no longer reliable, difficulties in thinking and making themselves understood by others have a significant effect. Most people react with helplessness as efforts to make sense of their experience fail (Bauml et al, 2006). Helplessness and hopelessness are the outcomes of self-concepts that are negative, expectations of poor outcome of the illness, and a locus of control that is external to the person. Thus the person has low self-esteem, feels that the outcome of the illness is beyond their control and thinks that they can do nothing to influence the course of the illness (Hoffmann et al, 2000).

The issue of stigmatisation of people with mental illness, and in particular schizophrenia, was discussed earlier in this chapter. However, an important aspect of stigmatisation is self-stigmatisation and how it affects self-image. Self-stigmatisation is ‘the agreement with negative prejudices’ (Vauth et al, 2007) that is internal and directed towards self. The stereotypes of society are accepted by the person and turned inwards. This results in social isolation, as the person withdraws due to both the need to maintain secrecy about the illness and the overwhelming shame about having the illness (Corrigan, 1998). Self-stigmatisation affects the person’s sense of self-efficacy and empowerment and this in turn affects levels of depression and is indicative of poorer quality of life.

The person with schizophrenia is in a dilemma. Do they reject the idea of having a mental illness, called lacking insight, or accept that they have a mental illness with the resultant stigmatisation and self-stigmatisation that occurs? Davidson (2003) eloquently tells the story of Kyle, a young man with delusions that he was involved in the CIA, who was labelled treatment-resistant. Kyle’s explanation for his resistance to treatment was that to accept treatment was to accept the label of schizophrenia: ‘I had to be either a CIA agent or a mental patient. Which would you choose?’ (p. 142). This is also a dilemma for mental health service providers. How can service providers encourage acceptance of mental illness when we know that the consequences of such acceptance is likely to be self-stigmatisation? Warner (2004) suggests that in the process of encouraging insight into the illness, services need to encourage the development of mastery, to encourage ways of having a sense of being in charge of the illness in order to combat the effects of self-stigmatisation.