Adapting Disclosure Programs to Reduce the Stigma of Mental Illness

In a 2016 consensus report, the National Academy of Sciences (NAS) concludes that strategic disclosure can decrease the harmful effects of stigma (1). As a result, strategic disclosure programs emerged for addressing the public health effects of stigma toward mental illness; Honest, Open, Proud (HOP) is one evidence-based approach to strategic disclosure. Rapid efforts to develop and evaluate strategic disclosure programs have highlighted the complexity of the task. As a social construct, stigma is defined differently by, among other things, culture, race-ethnicity, gender, age, and sexual orientation. As a result, HOP and other strategic disclosure programs need to be adapted to the local community that seeks to integrate them into community antistigma efforts. In this Open Forum, we highlight some of the lessons that have emerged in these adaptation efforts.

Stigma and Stigma Change

The NAS report distinguishes between public stigma (the discrimination that results when the general public endorses negative stereotypes about people with mental illness) and self-stigma (the loss of self-esteem and self-efficacy when people with mental illness internalize these stereotypes). Public stigma seems to be diminished best by contact-based approaches: interactions between people in recovery from serious mental illness and the general population (2). Self-stigma is weakened when people with mental illness associate with peers in recovery (3). Both contact and peer association are advanced through strategic disclosure (4). Contact requires people with mental illness to be “out” with their stories of recovery. Peer association is easier when people decide to strategically disclose their mental health history. Hence, disclosure might diminish the effects of both public and self-stigma.

HOP, formerly known as Coming Out Proud, is a three-lesson, peer-led group that supports strategic disclosure decisions. Lesson 1 helps participants consider the pros and cons of disclosing their mental illness experiences. Lesson 2 teaches ways the person may test readiness of others, or judge whether a person is likely to respond positively in general to mental health matters, before disclosing one’s own experiences. Lesson 3 helps people craft the story of their experiences. Two randomized controlled trials (RCTs) showed that HOP led to significant reductions in stigma stress and depression among adults (5,6). A more recent RCT examined HOP’s effects on adolescents, finding robust benefits in regard to stigma stress, depression, help-seeking intentions, and quality of life (7). The investigators of the most recent RCT went through an extensive process to adapt HOP for adolescents, illustrating the need for careful adaptation of strategic disclosure programs, such as HOP, for different communities. These adaptations illustrate the challenges facing stigma advocates going forward.

Adapting the HOP Program

Evidence-based medicine may unintentionally suggest that manualized programs can be implemented similarly across differing populations and communities. Ethicists, however, have noted limitations of such assumptions and argued for active and strategic adaptation of programs to reflect local needs and values (8). Community-based participatory research (CBPR) is one well-tested approach toward facilitating these kinds of adaptations (9). CBPR is a set of principles and practices that guide researchers in partnering with a community in developing or adapting a service to meet the needs of that group. Researchers bring expertise in methods and analyses. Community members are the subject matter experts, and their participation and viewpoint are especially important at the beginning and end of a study. Going into a study, they guide the CBPR team in lived experience about the problems the team seeks to address as well as relevant solutions. Coming out of a study, CBPR team members with lived experience are likely to implement the intervention in their communities to address their problems. Their ownership of the process is essential to subsequent real-world implementation. Key to CBPR success is shared power, a process that enables all members to fully participate (10).

“Community” is meant broadly here, encompassing race-ethnicity, to be sure, but also age, gender, socioeconomic status, and veteran status. Community includes any groups who share a common perspective toward mental illness and the ways that this commonality influences stigma. Community and commonality describe empirical questions. Does a group recognize its commonality vis-à-vis stigma, such that it organizes against stigma and for empowerment? Do community members vote with their feet and somehow assemble to address their perspective toward stigma? Nature of the health condition is also likely to define a community. For example, the stigma of mental illness is a markedly different experience than that of substance use disorder (1).

Adapting for age.

The original HOP program was developed to address the stigma concerns of adults with serious mental illness. College students indicated that the intervention did not reflect priorities in their lives. A CBPR team led by college students was therefore convened to identify necessary adaptations to HOP. The team offered three. First, mental health challenges that emerge in young adulthood often begin in college, especially for students who move away from home. The CBPR team identified disclosing to one’s family as a key challenge. Second, whereas HOP for adults focuses on disclosure in the work setting, students who informed the development of HOP for college students were concerned about disclosing to professors and fellow students. Third, HOP for college students noted the complexities of social media and disclosure, a topic absent from the original HOP-adults program. This adaptation illustrated a recurring value to disclosure decisions. The team did not presume to prescribe whether and how an individual student should disclose on social media. Instead, the manual provides questions the group uses to identify options, such as, “What are the costs and benefits of reporting on your Facebook page you were just released from the psychiatric hospital for depression?” The discussion among peers helps individuals recognize the pros and cons of their individual decisions.

HOP for high school students reflects the HOP-college vision with one major change. The HOP-college group is led by peers with lived experience—other students in recovery. HOP often evokes discussion of trauma related to mental health and stigma. In cases where trauma reflects abuse, HOP facilitators working with youths become mandated reporters, required to inform an appropriate government authority of abuse to a minor. Hence, HOP for high school needs to be co-led by an appropriately credentialed professional, typically a teacher or school social worker. This changes the power dynamic typical to other HOP programs where stigma disclosure discussions are led by people who themselves have made decisions about coming out about their mental health.

Adapting for health condition.

The stigma of mental illness is likely to vary by nature of the illness (11). Hence, strategic programs such as HOP may need to be adapted for different conditions. For example, HOP has already been adapted to meet the needs of people with Tourette’s syndrome and is being adapted for people recently diagnosed as having dementia or autism spectrum disorder. In each case, people with lived experience are recruited for the CBPR team that leads the HOP adaptation. Two lessons have emerged from these efforts. First, who is the person with lived experience who joins the CBPR team? Self-identity, rather than meeting DSM criteria for a specific disorder, is the more important requirement. Sometimes there is a disconnection between diagnostic interview and self-report. Regardless of whether people meet DSM criteria for Tourette’s syndrome, the key issue is whether they perceive themselves as troubled by the condition and by its corresponding stigma.

Second, can people with some types of lived experience fully participate in CBPR? The assumption that, for example, the cognitive or social impairments associated with dementia or autism spectrum disorder prevent a person from engaging meaningfully in CBPR reflects the stigma of the condition itself and hence illustrates the need for people with lived experience to be closely involved in program adaptations. Reasonable accommodations are excellent adjuncts to CBPR to help a person with a disability to join in research and development activities (12).

Intersectionality

People do not neatly sort into individual stigmatized conditions. Work we have done in the Cook County Jail illustrates this issue. “Sure, I’m concerned about the stigma of mental illness. But I am also in jail, struggling with a substance use disorder, and HIV positive. Each of these [has] equally harmful stigmas.” Social psychologists and sociologists describe this dilemma as intersectionality (13). They believe the experience of multiple stigmas is more than what might be explained by a simple additive model (that is, those with more stigmas are harmed more) and that stigma is moderated by salience, concealability, situation, and peer group. Intersectionality poses not only a conceptual but also a practical challenge for disclosure. Intersectionality may be a hurdle to strategic disclosure. Consider county jail inmates with co-occurring disorders who are engaged in HOP. While they might agree that considering costs and benefits of disclosing past mental illness is beneficial, they might be more troubled by the harm of stigma directed at their substance use disorder. On one hand, a value of inclusiveness might suggest engaging anyone, regardless of stigmatized condition, who wants to consider disclosure decisions. However, HOP is based on peers. Can a person with mental illness meaningfully support the person considering disclosure of a substance use disorder?

Conclusions

Work on stigma is rightly propelled by a sense of progressivism and the demand for rapid plans to erase its impact. Strategic disclosure has emerged as one way to realize these goals and can lead to organized approaches to guiding people about whether and how to come out. This Open Forum aims to support these goals, but with caution. Stigma is fundamentally a social construct defined by the culture from which it emerges. Hence, approaches to erasing stigma must reflect the local interests of the culture in which they occur. This means antistigma advocates need to adapt programs to meet local needs.