A new study published in Culture, Medicine, and Psychiatry finds that stigma is common for Danish adolescents who have experienced psychosis. Participants also reported that psychosis was more stigmatizing than other mental health diagnoses.

According to the current work, headed by Dea Gowers Klauber of the Copenhagen University Hospital, strategic disclosure (or non-disclosure) of the experience of psychosis is a common stigma management strategy used by adolescents. Disclosure can be therapeutic and normalizing when the audience is understanding, but it can also lead to stigmatization.

The authors write:

“We find that stigmatization is widely experienced, and psychosis is generally regarded as more stigmatizing than co-morbid mental illnesses. The participants engage in different strategies to manage possible stigma, especially strategies of (non-)disclosure. Disclosure is experienced as both therapeutic and normative, but also bears the risk of stigmatization, and is therefore associated with numerous considerations.”

The work is part of a larger research project called the Tolerability and Efficacy of Antipsychotics (TEA) trial, which compares the effects of two antipsychotics (aripiprazole and quetiapine) in adolescents with first-onset psychosis. This work aimed to explore how adolescents experience and manage stigma around psychosis. To achieve this, the authors conducted semi-structured interviews with a subset of TEA participants selected to represent the study population regarding age and sex. Overall, the authors interviewed 34 participants from the TEA.

All the participants were between 14 and 19 years old, and they were all diagnosed with psychosis. The most common diagnoses in this study were paranoid schizophrenia (20 out of 34 participants) and schizoaffective disorder, depressive type (9 out of 34 participants). Other diagnoses in the sample included unspecified schizophrenia, brief psychotic disorder, schizoaffective disorder (bipolar type), undifferentiated schizophrenia, and ‘other psychotic disorder’ (1 participant each). Out of the 34 participants, 23 were female. At the time of the interview, 12 out of 34 were in remission.

The interviews were based on the Teen Subjective Experience of Medication Interview (Teen SEMI). Following advice from 2 service users receiving treatment for psychosis, the authors modified the interview questions to be more open-ended, allowing the interviewees to steer the conversation. The questions focused on the participants’ daily lives after diagnosis and their interactions with family, peers, and teachers. To avoid leading the interviews, the interviewer refrained from using terms like ‘stigma’ or ‘discrimination.’

The authors observed that none of the participants mentioned the term ‘stigma,’ and only one mentioned ‘discrimination.’ The interviewers guided the process and conducted in-depth one-on-one interviews to ensure that the research focused on the participants’ experiences rather than the researchers’ own theories and hypotheses. The authors emphasized the importance of centering the participants’ experiences, especially when non-stigmatized experts study issues related to stigmatized groups.

The researchers identified themes within the interviews in three stages. During the first stage, one-third of the interviews were analyzed and coded for themes. In the second stage, another third of the interviews were coded using the themes from the first stage. This process resulted in the emergence of new themes and refinement of the themes identified in the first stage. The new and refined themes were then used to recode the earlier interviews. Finally, in the third stage, the remaining interviews were coded for themes and compared to the interviews from the first two stages. By this point, the codes had stabilized, and there was rarely a need to recode the earlier interviews.

The authors identified eight overarching themes from the interviews:

1. (Non-)disclosure: Strategic Management of Stigma

Rather than being resigned to stigmatization, participants carefully managed choices around disclosure in an attempt to navigate potential stigma. For example, one participant reported trying to tell whether others would “even be able to handle it” and preferred to disclose his diagnosis after he had displayed high-functioning behaviors.

2. Disclosure of Psychosis

Participants were apprehensive about disclosing their psychosis diagnosis compared to other mental health issues. One participant reported that she let her classmates believe she was hospitalized as a result of depression and anxiety because she “didn’t want the psychotic thing to get out to anyone at all.”

Another participant reported being happy to be diagnosed with depression with psychotic symptoms “because it’s easier for people to understand that you get over depression than that you get over psychosis.”

3. A Complex of (Non-)disclosure Considerations

The participants carefully considered when, how, with who, and to what extent to disclose their diagnosis. This included strategies such as assessing other’s states of mind and previous experience around psychosis, assessing the closeness and strength of the relationship, choosing which aspects of their diagnosis may be necessary or beneficial to share, choosing the method of disclosure, and timing disclosure to be less stigmatizing.

4. (Non-)disclosure: A Trial-and-Error Approach

Participants frequently reported having to revise disclosure strategies based on poor outcomes. One participant reported disclosing her diagnosis to a friend, who subsequently told many of her classmates. This resulted in bullying. She then opted for non-disclosure, which led to her losing the trust of some of her peers:

“They can tell something is wrong. Many get a bit annoyed or believe that I don’t trust them enough to tell them how I feel because I don’t tell them what has happened or what it is, why I behave like I do. And then, people start to not truly trust me. “

5. Stigma Management as an Ongoing Process

Many shifting elements influence how participants navigate stigma. Participants’ own understanding of the stigma associated with psychosis, the relationships involved, past experiences of disclosure and non-disclosure, as well as structural influences, means that stigma management is a constantly evolving process.

6. Openness: Both Therapeutic Disclosure and Normative Context

Disclosure can be therapeutic. It can lead to increased support and understanding and enhanced self-esteem, as well as giving participants leeway to ask for help and create a way to share the emotional burden of mental health issues. One participant reported that after disclosing to her teachers, she could “talk more openly about that stuff now because people, like, know that I’m ill. So, I can say, ‘I’m afraid now’ or like, ‘I’m uncomfortable now.’”

Participants also reported experiencing social pressure to disclose. The authors note that adolescents may be especially susceptible to this pressure as they are more peer-oriented than adults. Although the present work focused more on internal reasons for disclosure decisions, the authors acknowledge that external and structural factors, like the expectation of openness in maintaining relationships, can also heavily influence these decisions.

7. They Don’t Get It: Beyond Stigma

Fear of not being understood was a common consideration in disclosure decisions. This fear played into decisions around disclosure in three stages: before, during, and after disclosure. This fear can discourage disclosure before the event, change the method of disclosure during the event, and cause frustration after the event.

8. Those That Understand: The Malleability of Universality

Participants reported greatly valuing people who understood what they were going through. As with past research, participants were comforted by not being the only ones to have a given experience. However, the authors note that what qualified as a similar experience vastly differed between participants. Where one participant reported feeling understood by a friend with Crohn’s disease because they both were having “a bad time,” another participant reported not being able to connect with peers that had ADHD or depression because “I’m the only one in school that suffer[s] from a mental illness … There’s no one with schizophrenia-like me.”

According to the authors, this is evidence that each participant tended to centralize different aspects of their diagnosis (‘having a bad time’ versus ‘having a psychotic experience’) as a basis for shared understanding.

The authors acknowledge several limitations to the current study. Interviews were not revisited by participants, meaning they had no chance to change or clarify their responses. This means the data provides only a snapshot of participants’ experiences and limits the scope of the study. The themes of being understood and not being understood did not emerge until the interviews were analyzed. This limited the authors’ ability to expand on and explore this theme. The low number of participants limits the generalizability of the results. The research was conducted with exclusively Danish participants, so the results are likely not generalizable to other populations.

Past research has shown that stigma around mental health diagnoses is driven by fear and misunderstanding. People with mental health diagnoses often face stigma as part of their daily lives. While stigma around some diagnoses, such as depression, may be decreasing, researchers have noted that stigma around psychosis is increasing.

Several studies have found that the biomedical model of mental illness, as well as essentialist thinking (that things and people have unchanging properties), leads to increased social rejection and discrimination around mental health diagnoses. While mental health literacy may not help combat stigma, psychosocial approaches to mental health (that emphasize structural and environmental causes of mental illness) are more promising.

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Klauber, D. G., Christensen, S. H., Fink-Jensen, A., & Pagsberg, A. K. (2024). I Didn’t Want the Psychotic Thing to Get Out to Anyone at All: Adolescents with Early Onset Psychosis Managing Stigma. Culture, medicine and psychiatry, 10.1007/s11013-024-09859-3. Advanced online publication. https://doi.org/10.1007/s11013-024-09859-3 (Link)