Patients with family members
THE EXPERIENCE OF mental illness is more than the burden of symptoms for the patients. Finzen (Finzen, 1996) noted, “there is a second illness”: the stigma attached to the disorder. Stigmatization is a further dimension of suffering in addition to the illness experience. It leads to social isolation and limited life chances (Schulze & Angermeyer, 2003). People who are stigmatized are likely to become victims of devaluation and social exclusion (Finzen, 2000). A considerable amount of studies have documented the stigmatization of people with mental illnesses and the negative consequences for their lives (Crisp et al., 2000).
In recent years, and largely as a result of advocacy by relatives’ groups like the National Alliance for the Mentally Ill (NAMI), awareness has grown that stigma not only affects people with mental illnesses but also their families (Sommer, 1990). This process, in which a person is stigmatized by virtue of his or her association with another stigmatized individual, has been referred to as “courtesy” stigma (Goffman, 1986). The existing literature suggests that stigma has long been, and still continues to be a problem for families of psychiatric patients (Phelan, 1998). Thus, when people become mentally ill, the patients themselves as well as their relatives are confronted with numerous changes in their everyday lives due to the illness and the stigmatization they experience because of the disorder (Trosbach et al., 2003).
Up until now, most research on the stigma of mental disorders has focused on attitudes to and beliefs about psychiatric disorders among the population (Schulze & Angermeyer, 2003). From the results of these population surveys, a largely negative picture emerges: people with mental illness, particularly patients with schizophrenia, are perceived as unpredictable, aggressive and dangerous, less intelligent, and unreasonable (Angermeyer, M.C. and Matschinger, H., 1995. Violent attacks on public figures by persons suffering from psychiatric disorders: Their effect on social distance towards the mentally ill. European Archives of Psychiatry and Clinical Neuroscience 245, pp. 159–164. Full Text via CrossRefAngermeyer & Matschinger, 1995). Other studies have given clear evidence of the existence of stigma among family members of patients with severe mental disorders (e.g., Phelan et al 1998 and Wahl and Harman 1989). In contrast to these studies, only a small number of studies have investigated subjective stigma experiences. Among these, however, no study has yet examined stigmatization experiences of patients with obsessive-compulsive disorder (OCD) and their relatives.
OCD is a devastating illness that changes the lives of patients and their family members. The patients are plagued by repeated obsessive thoughts and behavior. As a consequence, their social life gets more and more restricted. Many patients with OCD are completely dependent on their family members when it comes to everyday tasks (Steketee, 1997). In most of the families with a patient suffering from OCD, the disease is a secret that is kept by several family members (Newth and Rachman, 2001). Van Noppen (1997) hypothesized that families of patients with OCD move along a continuum that ranges from giving in and assisting in OCD symptoms, to resistance and overt opposition. Calvocoressi and colleagues (Calvocoressi et al., 1995) interviewed patients and their family members and found that one-third of the relatives often reassured the patient, participated in the patient’s compulsions and assumed responsibility for activities usually performed by the patient. Cooper (1996) also surveyed a large number of family members of patients with OCD to identify the symptoms that disturbed them.
The present study aims to describe how relatives of people with OCD experience stigmatization and discrimination in their everyday lives.
Method and sample
The study was performed in Leipzig, Germany, within the scope of the research project “Health and Financial Burden on Caregivers of Mentally Ill Patients” (Angermeyer et al., 2002). Twenty-two relatives of patients with OCDs (ICD-10 F 42.0: OCD predominantly with aggressive obsessions; F 42.1: OCD predominantly with compulsions and F 42.2: OCD with both obsessions and compulsions were interviewed.
Tags: Patients family