Adapting Disclosure Programs to Reduce the Stigma of Mental Illness

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.

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).