Distinctly negative societal stereotypes pertaining to mental illnesses are known to exist.26,27
Once an individual is labelled as having a mental illness, these negative stereotypes are evoked.28
Individuals with mental illnesses are regarded as unpredictable, aggressive, dangerous, unreasonable, of limited intelligence, lacking in self-control and frightening.29
Studies suggest that a relationship exists between these stereotypical beliefs and a preference for social distance.29,30
As the entire sample of the present study was African American, the effects of race, which is associated with its own stigmatizing beliefs, must additionally be considered. It is known that a key characteristic of racial prejudice is an explicit desire to maintain social distance from stigmatized groups.31
In a qualitative study conducted by Hamilton et al.
attitudes regarding schizophrenia of a convenience sample of African Americans from the south-eastern United States were explored. The majority of participants believed that symptoms associated with the disease resulted in the affected individual being inherently dangerous and prone to violence. It was postulated by the authors that this view was responsible for the expressed desire for social distance by the participants.
Families and significant others commonly play an integral role in the help-seeking process. Yung and McGorry,33
in their hybrid/interactive model for the psychosis prodrome, suggested that, ‘feedback loops exist as well, with the family responding in certain ways, which in turn affects the individual and so on.’ In a qualitative study by Boydell et al.
patients consistently described the extensive influence of significant others in their social network in seeking help for emerging psychotic symptoms. A qualitative study conducted with family members in the north-eastern United States, by Corcoran et al.
found that after consulting with a network of relatives, friends and religious leaders, families sought psychiatric help, only as a last resort. In that study, stigma was identified as a major concern that would affect both the individual and the family for the rest of their lives. One mother remarked, for example, ‘The S word – schizophrenia – I'm going to deal with it for the rest of my life.’
In the present study, the families generally reacted toward the individuals with emerging psychosis with empathy and compassion; however, some blamed their loved ones for some of their behaviours. Negative symptoms, which often predominate in the prodromal phase of schizophrenia, may be perceived to be within the individual's control, which could result in blame for the condition.36
Having a family history of a mental illness also may shape the family's unique perspectives. In this study, eight of the 12 participants had a family history of a mental illness. Some research suggests that families with other loved ones with schizophrenia are often able to detect symptoms of the disorder more readily than families with a single affected individual.37
However, a family history of a psychiatric disorder is not reliably associated with a shorter delay in treatment initiation for the first psychotic episode. This may be due to tolerance for, and denial of, early psychotic symptoms by the family,38
as previous exposures may have heightened their awareness of the stigma associated with a confirmed diagnosis. Thus, fear of labelling and negative societal stereotypes associated with mental illnesses may have resulted from previous exposure to an individual with a mental illness.
Fear of labelling may result in the adoption of certain coping mechanisms by family members. For example, they may attribute the patient's behaviour to external factors. In the qualitative study by Corcoran et al.
families made a wide range of attributions for early behavioural changes and symptoms in the period leading to psychosis, including stress, drugs and the onset of adolescence itself. In the present study, other coping mechanisms that the families employed included excusing, secrecy and denial. Additionally, in a qualitative study of 15 patients with early psychosis, Judge et al.39
identified withdrawal/social isolation and avoiding help as two prominent coping mechanisms employed by patients in response to early psychosis. Boydell et al.40
conducted a qualitative study of youth experiences of psychosis in Canada, and found that early symptoms of psychosis were often ignored and hidden. It has been suggested that keeping the behaviour of the individual a secret is a means of avoiding anticipated rejection.41
Remarkably, eight of the 10 patients related to participants in this study had accessed the mental health system only following contact with the police due to violent or suicidal behaviour. A high threshold for treatment initiation has been found in other qualitative studies of first-episode patients, whereby dangerous behaviour, a crisis or acute escalation of symptom severity appeared to provoke entry into the mental health system.35,39
It appears that the perceived need for services is influenced not merely by the presence of altered experiences and illness symptoms but also by the social contexts and decisions individuals and their families make in response to these symptoms.
Great importance is currently being attached to determining the clinical and social variables that affect DUP. The themes and subthemes that emerged from the present study's rich, qualitative interviews with family members guided a grounded theory that demonstrates potential ways in which the stigma perceived by family members may raise the threshold for initiating treatment, thus delaying treatment initiation. To illustrate how stigma could prolong DUP, a testable model () was created by combining themes and subthemes from the qualitative data. The generation of the model was further informed by constructs from modified labelling theory,19,20
as put forth by Link et al.
This theory provides an explanatory model of the potential mechanisms through which stigma affects outcomes of mental illnesses. It asserts that psychiatric labels are associated with negative societal reactions, which exacerbate the course of the person's disorder. The anticipation of rejection and negative societal reactions may lead to social withdrawal. Thus, individuals and family members may employ several strategies to minimize the impact of these labels, including keeping their diagnosis and treatment a secret, informing others about their situation or withdrawing from social contacts that they perceive as potentially rejecting.42–44
While these coping mechanisms may protect an individual from some forms of personal rejection, they ultimately may be ineffective because labelling and stigma are social, not individual, problems.43
FIGURE 1 Schematic representation of potential effects of stigma on duration of untreated psychosis: a grounded theory model informed by modified labelling theory put forth by Link et al.19,20
The data collected in this qualitative study suggest that the initial signs of a mental illness, including early psychotic symptoms, do not receive appropriate attention and early intervention. Treatment was usually accessed only when the individual displayed violent, suicidal or other overt and alarming behaviour. It could be argued that coping mechanisms employed by family members, who are integral in the help-seeking process – including external attribution, excusing the behaviour, secrecy and denial – have the potential to raise the threshold at which treatment is sought. It is in this way that the stigma surrounding mental illnesses, which has been cited previously as a key barrier to treatment seeking,15
may affect treatment delay. As illustrated by the feedback loop in the model (), it is possible that the raised threshold for the initiation of treatment, and the externalizing behaviour displayed by the individual during the period of treatment delay, reinforces negative societal stereotypes. If this threshold were lowered through programmes that reduce stigma, it is possible that, over time, negative stereotypes also may diminish through this secondary route. What is therefore advocated in an effort to lower this threshold is an overall approach to stigma reduction, which would involve programs of advocacy, public education and exposure to persons with mental illnesses through schools and other societal institutions.44
These findings are by no means intended to lay the fault of delays in treatment initiation within families, as there are individual, structural and societal causes for patients not receiving treatment. Although all participants in this study received care in a public-sector health system that provides services regardless of health insurance status or ability to pay, availability and access are obvious concerns that must be continually addressed. Boydell et al.40
examined issues pertaining to mental health-care access for children and youth in rural Canadian communities from the family perspective. Along with stigma, that study identified lack of awareness of the availability of mental health services, cost factors, the necessity of acting as advocate in order to receive mental health services, limited community resources, waiting times and the ‘invisible’ nature of mental illnesses when contrasted against other physical illnesses, as barriers to accessing mental health care. Individual and family factors that have been shown to be associated with a longer DUP include anxiety associated with psychosis and coping styles used by the individual,45
the family's perception of onset,46
families not recognizing psychotic symptoms until they approached a crisis,35
substance use and homelessness,47
poor premorbid adjustment,48
more insidious mode of onset of psychosis4
and severity of negative symptoms.49
As all 12 participants in this study were African American, the constructs of race, cultural mistrust, prejudice and health-care access for minorities in the United States deserve mentioning. Research suggests that in the United States, racial and ethnic minorities tend to receive a lower quality of health care than non-minorities, even when access-related factors, such as patients' insurance status and income, are controlled.50
In the report entitled Mental Health: Culture, Race, and Ethnicity
then Surgeon General David Satcher highlighted the race-, ethnicity- and culture-based disparities in mental health services for African Americans. The underlying root causes of these disparities are complex, and inevitably tied to historic and contemporary inequalities. It has been argued that such inequalities engender cultural mistrust among the African American population, and this cultural mistrust has been shown to predict negative help-seeking attitudes.52
There is research to suggest that black minorities of Caribbean and African origin show more complex and adverse pathways to the hospital, often involving the police.53
Some studies also show that African Americans are more concerned with stigma than other ethnic groups in the United States and are more likely to endorse stigmatizing beliefs regarding people with psychiatric disorders and their families.54,55
African Americans have reported that stigma is a significant treatment barrier in qualitative studies.54,56,57
In a qualitative study conducted with public-sector, African American mental health consumers, the consequences of stigma concerns for these consumers were substantial.58
Most suffered for many years with untreated mental health problems because they avoided, delayed or refused voluntary mental health treatment to avoid the external and internal stigma of being ‘crazy’, and many consumers faced not just disapproval from others but active discouragement from entering or remaining involved in mental health treatment.
Treatment delay appears to be driven by a complex set of intersecting factors. Stigma, which effects discrimination at the individual, institutional and structural levels,59
is undoubtedly one of many such factors. Sociologists have identified legislative activities that are examples of structural stigma as applied to African Americans.60,61
Institutionalized discrimination at various levels may contribute to racial and ethnic health disparities through multiple pathways, including reduced access to high-quality health-care services, as well as economic and social deprivation.62
Indeed, due to the multifaceted nature of stigma, an alternative model to the one proposed in this study could be conceptualized, in which treatment delay would result not only from individual, family and societal beliefs about mental illness, but also from institutionalized stigma. Such a model may provide a more holistic view of the stigma construct, which, by its nature, is multidimensional. The measurement of institutionalized stigma was unfortunately beyond the range of consideration of the present study.
This study had several limitations that should be acknowledged. First, the sociodemographic characteristics of the sample limit generalizability of the findings – data were collected from a relatively homogeneous sample of African American participants with a family member being evaluated in a large, urban, public-sector, inpatient psychiatric unit in the south-eastern United States. Second, stigma is only one of many variables that undoubtedly influence DUP, and the model is therefore by no means a comprehensive depiction of the treatment delay process. Third, because the study was not longitudinal, changes in families' beliefs about mental illnesses over time could not be assessed. Fourth, it should be reiterated that the model generated, based on the four prominent themes – society's beliefs about mental illnesses, families' beliefs about mental illnesses, fear of the label of a mental illness and a raised threshold for the initiation of treatment – is speculative in nature, rather than directly depicting the results. Lastly, the model generated by this study, as well as the suggestion that stigma may delay help seeking, thereby prolonging DUP, should be interpreted with caution. As the study was cross-sectional in nature, only apparent associations among variables can be evaluated and not causal pathways.
Researchers conducting a large, population-based investigation of first-episode psychosis noted as a limitation that data about the effects of stigma on DUP were not obtained, suggesting that this is an important area for further study.4
Future research should attempt to quantify the hypothesized linkages in the grounded theory model developed herein. Once these relationships are clearly understood, public educational programs could be developed, with the aim of reducing the threshold at which treatment is sought, and ultimately decreasing DUP, leading to improved outcomes for individuals affected by these serious mental illnesses. Wong et al.63
found that early in emerging psychotic illnesses, families report helping patients and worrying about them, although their lives are not yet prominently disrupted. Community-level efforts to inform the public about psychotic disorders and reduce the stigma associated with them could plausibly alleviate family burden, and could lower the threshold for the initiation of treatment even before major family disruptions occur, ultimately improving patients' and families' outcomes.