Stigma in families of individuals in early stages of psychotic illness: family stigma and early psychosis

Sample

The sample obtained for the present study represents a convenience sample of patients identified from both the New York State Psychiatric Institute at Columbia University and Yale University's Department of Psychiatry. The clinical ultra high-risk group of individuals was identified as prodromal to psychosis using the Structured Interview for Prodromal Syndromes/Scale of Prodromal Symptoms.²³ Herein, they will be referred to as ‘prodromal’ individuals. For the recent-onset psychosis patients, diagnoses in New York were made using the Diagnostic Interview for Genetic Studies,²⁴ whereas diagnoses in the Yale psychiatric system of care were obtained from chart review. Individuals were asked to nominate a preferred identified family member for interview. Individuals provided consent for their family members to be contacted and to be invited to participate. At both sites, family members provided written informed consent for participation.

No participants were excluded or refused to participate. The only exclusion criterion was an inability to speak English and/or inability to give consent, either on the part of the individual or any family member. (Exclusion of individuals who were unable to speak English restricts the representativeness of the sample, in particular regarding putative ethnic differences in familial stigma.) This study was approved by the Institutional Review Boards at the Yale School of Medicine, New York State Psychiatric Institute and the Columbia Presbyterian Medical Center.

Measures

To assess families' general attitudes about mental illness, we used a modified and expanded version of the Opinions about Mental Illness (OMI) scale.²⁵ The OMI covers salient elements of stigma, such as the linking of mental illness labels to: (i) stereotypes, that is, ‘People who are mentally ill let their emotions control them’; (ii) difference, that is, ‘There is something about mental patients that makes it easy to tell them from other people’; and (iii) status loss and discrimination, that is, ‘Anyone who is in a hospital for a mental illness should not be allowed to vote’. The OMI was modified to reduce social desirability bias, that is, ‘All patients in mental hospitals should be prevented from having children by a painless operation’ was modified to ‘People with mental illness probably shouldn't have children’. Thirteen new items were added to reflect current trends in public attitudes towards mental illness; for example, ‘The Americans with Disabilities Act should cover people with mental illness’ and ‘Celebrities and famous people shouldn't disclose their histories of mental illness’. Each item required a true or false response. To reduce response bias, items were worded either positively or negatively, with a score of ‘zero’ for the stigmatized response. Therefore, lower scores reflected a more negative attitude towards mental illness, and hence more stigma.

The Family Experiences Interview Schedule (FEIS)²⁶ primarily assesses family burden; it includes a stigma subscale that probes ‘associative’ stigma, that is, worry about discovery of illness, concern that others would act differently or avoid the family, the impetus to hide the illness or keep it secret and feelings of shame. As with the OMI, stigmatized responses are scored as ‘zero’, such that a lower score indicates a greater degree of stigma.

Items from both the OMI and FEIS scales were separately summed to calculate total scores for each scale: chi-squared analyses were done to determine differences in family response by stage of illness or ethnicity.

Sample

There were nine prodromal individuals and 11 with recent-onset psychosis. Both groups were primarily male (n = 8 per group), although prodromal individuals were younger (15.9 years (standard deviation, SD 2.5) vs. 20.6 years (SD 2.9)) as were their family members (41.1 years (SD 7.9) vs. 47.7 years (SD 7.8)). Additionally, the ethnic distribution of the two groups was different. The family informants for prodromal individuals were primarily white (six of nine), with only two African American and one Hispanic individuals. By contrast, there were equal proportions (three each) of these three groups among family members of recent-onset psychosis patients, with one Asian American and one ‘other’ (mixed race) family member. Family members were primarily parents, with only three being non-parental caregivers (adult siblings and aunt).

On the OMI Scale, which measures generalized stigma, family members of both groups endorsed a number of ‘supportive’ items, including that patients should be encouraged to vote, that patients want to work, that mental illness should be protected legally as a disability, that parity in insurance coverage should exist and that believing in God and prayer could help someone get better (Table 1). There were no supportive items that were endorsed by fewer than 40% of families. Consonant with this, only a small portion of the families endorsed negative or stigmatized items, that is, patients don't pay attention to how they look; patients can only do basic jobs; children shouldn't visit psychiatric hospitals; that it is easy to tell by looking at someone if they have mental illness; mental illness should be listed on driver's licenses and patients should not be police officers (Table 1). No one endorsed the idea that talking doesn't help much with mental illness. There were only a few negative or stigmatized items that had high levels of endorsement (>75%), which included that dealing with a patient could be like dealing with a young child and that mental illness can lead someone to behave in ways that make other people laugh (Table 1).

For generalized stigma, families of prodromal individuals were twice as likely to endorse the idea that people who were once patients in a psychiatric hospital could be trusted as babysitters (Table 1). Consonant with this, some ‘stigmatized’ items were endorsed more by families of recent-onset psychosis patients: more tax money should be spent on building psychiatric hospitals; it is inadvisable to marry someone with mental illness; patients should probably not have children; celebrities should not disclose their history of mental illness; and a psychiatric patient has many things wrong (as opposed to a heart patient) (Table 1). These discrepancies, however, may be explained by the ethnic differences between the groups, and differential endorsement by ethnicity.

Associative stigma was endorsed more by family members of patients with recent-onset psychosis than by family members of prodromal individuals (χ² = 2.22, degrees of freedom (d.f.) = 18, P < 0.05) (Table 2). Many of these items were endorsed primarily by the ethnic minority families of recent-onset psychosis patients; for example, worry others would find out about the patient's condition, feeling the need to sometimes hide the illness of their family member and a sense of embarrassment or shame about the illness (Table 2). By contrast, generalized stigma was equal in the two family groups (χ² = 1.70, d.f. = 16, P = 0.11). Ethnic minority families did not differ overall from white families as to associative (χ² = 0.879, d.f. = 18, P = 0.39) or generalized stigma (χ² = 1.205, d.f. = 16, P = 0.246).

The preponderance of associative stigma among these family members of patients with recent-onset psychosis is reflected in qualitative research with this same cohort; for example, concerns that healthy siblings of the patient would be ostracized and teased as a result.²² By contrast, stigma was not a theme that was prominent among families of prodromal individuals.²⁷

Of note, there was no association of associative stigma with subjective or objective family burden (data not shown), which were also measured with the FEIS²⁶ in this cohort of families of individuals in early stages of psychosis.²⁸ This is in contrast to a finding of association of burden and stigma in families of first-episode schizophrenia patients using different scales.²⁰

Limitations

This is a small exploratory study of generalized and associative stigma in families of young people with early stages of psychosis. There are several limitations in this study, the primary one being that stigma was evaluated only in those families who had sought treatment and obtained care for family members in early stages of psychotic disorder. This may be less of an issue for the patients with recent-onset psychosis who had been hospitalized, often involuntarily, as a consequence of the crisis of psychosis onset. However, families of prodromal individuals may be far less typical, in that they accessed care to a specialty clinical research programme. Therefore, stigma is likely greatly underestimated for families of prodromal individuals in general, as the study did not capture individuals with prodromal symptoms (and their families) who are in the community and not receiving care.

Another major limitation in this study is the exclusion of individuals and families who do not speak English, which limits the representativeness of the sample, and which also makes very tentative any apparent findings of ethnic differences in stigma for families. Other limitations include the use of scales that do not have established psychometric properties in family members of patients.

Further study of stigma in families of individuals with evolving psychotic disorders will require larger and more representative samples to determine if these preliminary ethnic differences in stigma are replicable, and to evaluate their relationship to other factors of interest, including socioeconomic status^45–47 and cultural mistrust.^48–50