Early Psychosis Intervention: A Culturally Adaptive Clinical Guide

17. Experience of Stigma in Early Psychosis Patients and Caregivers

17 Experience of Stigma in Early Psychosis Patients and Caregivers Desiree Yan Wong, Dicky Wai-sau Chung, and May Mei-ling Lam Psychotic disorders often emerge in late adolescence and young adulthood with a prolonged delay between onset of symptoms and the first effective treatment. Such delays affect symptom severity, treatment response, relapses, and quality of life. The stigma associated with psychosis may be one of the major factors associated with delays in seeking medical help. For diagnosed patients and their family members, the negative stigma attached to psychotic disorders also often cause psychosocial repercussions. This chapter discusses some concepts of stigma in psychosis, with reference to the subjective experience of stigma and reactions to the diagnosis among patients and caregivers in Hong Kong. Public Stigma of Psychosis Social stigma attached to mental illness is universal regardless of culture and ethnic group. In a broad and non-judgemental sense, any feature that marks a person out as different from others can be considered a stigma. However, more often, stigma is a mark of shame or discredit: it emerges through the social processes of labelling, stereotyping, and discrimination (Link & Phelan, 2001). By labelling, people are distinguished as different, and seen as “them” and “not us”. These people are then linked to undesirable characteristics that form stereotypes. Stereotypes of mental illness held by the public have four common components (Hayward & Bright, 1997): (1) the mentally ill are dangerous ; (2) they are unpredictable and unable to follow accepted social roles; (3) they are responsible for their behaviours and conditions; and (4) mental illness is chronic, difficult to treat with poor prognosis. The labelled people are subsequently discriminated against, leading to status loss, unfair treatment, and unequal outcomes. 200 Desiree Yan Wong, Dicky Wai-sau Chung, and May Mei-ling Lam Many factors contribute to the stereotyping and discrimination of psychosis . Media reports of violence or crime can lead to reactions of fear and anger in society. Anger can be further exacerbated if the mentally ill offenders get lenient sentences due to their unwell mental state. Fear easily leads to an increase in social distance from the neighbourhood, and hence marginalization (Tsang et al., 2003). Many people also despise the mentally ill, not only because of the attribution to their personality and responsibility for their own behaviour, but also the high prevalence of coexisting substance abuse in that population (see Chapter 27, “Comorbid Substance Abuse in Early Psychosis”). People’s pessimistic view of mental illness being irreversible and untreatable, in addition to not being able to arouse sympathy, can heighten despair and neglect. Internalization of Public Stigma and Concealment Stigmatization has two interrelated aspects: public stigma on the mentally ill, and the stigma perceived by patients and their relatives. These two influence each other, forming a vicious cycle. The internalization of others’ negative valuation gives rise to low self-esteem and a sense of incompetence in patients. This further jeopardizes their social skills and limits the social circles. The difficulty in reintegrating into society is a self-driven marginalization (Mueller et al., 2006). Patients may also pessimistically perceive themselves as suffering from a devastating illness. Recent research has emphasized the adverse effects of stigma on patients who have suffered from psychosis. In particular, the social stigma associated with the illness is debilitating to patients, and their family who also suffer the brunt of the social reaction. A study on people with schizophrenia in China (Phillips et al., 2002) shows an association between perceived stigma in family members and higher expressed emotion, with the latter increasing the chance of relapse, resulting in poorer treatment outcomes. Both parties have a tendency to conceal the psychosis due to the fear of being stigmatized and discriminated against. Concealment of mental illness may delay medical treatment and thus lead to poorer outcomes. Either for the hereditary or upbringing factor attributed to having caused the mental illness, parents are blamed when they have a mentally ill child either because of hereditary factors or style of upbringing, that give raise to the disgrace for having mental illness in the family. The relatives readily handle Experience of Stigma in Early Psychosis Patients and Caregivers 201 this situation with defence mechanisms of suppression or denial (e.g., attribution to supernatural forces or trivialization of the problem). In Japan, even psychiatrists were reluctant to tell patients with schizophrenia the exact diagnosis (Ono et al., 1999). A study in Hong Kong found that...