In the 19 participants of study 2, cooperation and reliability were considered good to excellent. The interviews lasted between 18 and 59 minutes, with an average of 28 minutes.
Seven out of 19 participants self-reported a diagnosis of schizophrenia, two identified a diagnosis of psychosis and two of schizo-affective disorder, four reported a non-psychotic diagnosis (anxiety, depression, hypnosis proneness) and, four denied any mental illness:
“I do not think I suffer from schizophrenia. I am completely normal, and I do not have the other syndrome neither… I was hospitalized because I made an error.”(participant A9).
Eight participants preferred a label of salience syndrome, five of schizophrenia, two preferred a mix of both labels and four rejected both labels (“I don’t want any of them”). There was a significant link between self-reported diagnoses and preferred labels (χ2
24.75,p<0.005). Indeed, all those preferring a label of schizophrenia (N
4) had also initially self-identified with a diagnosis of schizophrenia. A first reason mentioned to prefer a label of schizophrenia was perceived good fit with their personal experiences: “This one fits my case better” B9, “I have not experienced a salience syndrome, but schizophrenia yes” B5, “I: Why is [schizophrenia] describing you better? A: I hear voices” B6, “schizophrenia – this reminds me a little bit of myself” A8. With further questioning, we also discovered that this preference for schizophrenia was the result of a painful acceptance process and that the participants were not ready to dispose of the explanatory power of this diagnostic label in favor of an unknown and obscure new label: “the salience syndrome is less clear for me than schizophrenia, which I know what it is, I think it is that neurotransmitters are too active. […] When you understand that voices are hallucinations, it is over. You can then still experience voices, but you know it’s not serious” B6. Another participant expressed a feeling of relief related to receiving a diagnosis: “I think that having received the diagnosis of schizophrenia has helped me because I now understand the symptoms better, as well as what is true or what is not that true. I understand how this disease affects me” A8.
The choice of the salience syndrome label was not clearly fitting with their subjective experiences. In fact, most found the salience syndrome concept and the respective clinical vignette obscure, in spite of additional explanations by the interviewers:
“Salience syndrome, it’s something that is less, I don’t know, I didn’t know it, I’m not sure what it means really’’. Moreover, none of the initial illness narratives could be identified as similar to the salience syndrome descriptions offered in the scientific literature. One participant was unsatisfied with the two choices: “None… do you only have two choices?”, while another rightly remarked that « it is never fun to receive a diagnosis» and then refused to endorse any of the two labels. Only one participant endorsed the salience syndrome label while saying enthusiastically that this was a very good description of his illness experience.
Questioned about the stereotypes evoked by the two labels, 17 of the 18 participants reported having witnessed negative stereotypes of schizophrenia, with violence and danger (14 participants) pernicious in mass media “In the medias, each time they talk about schizophrenia, it is when there is a murder. Like what happened in Arizona last week. […] This is why I do not want to be associated with this [label of schizophrenia]”A8 and “I think it is the word. In general, people think that schizophrenia is very severe, that people are violent or aggressive”. The advantage of the salience syndrome resided in its novelty and the related lack of attached stereotypes.
Unsurprisingly, the affective reactions reported or expected for schizophrenia were those of fear and sadness: “ the diagnosis of schizophrenia, the psychiatrist put it on a paper, he did not tell it in person. Luckily, because I would have cried in front of him. But when I saw it on the welfare certificate, I cried, I went to the washroom, in the hospital, and I cried a lot. I didn’t like it” A3. In contrast, salience syndrome evoked only neutral reactions and, in two cases, curiosity.
The capacity to normalize symptoms and to make them understandable by the entourage were reported by three participants as an advantage of the salience syndrome description: “a lot of people can identify with these” B2, “I would feel comforted… because the diagnosis would make a bit more sense, people could understand it” and “well schizophrenia (…) for my family, it would affect them more because they couldn’t understand it, they can’t hear voices, the hallucinations”. Moreover, most participants feared rejection by their peers in cases of diagnoses of schizophrenia. The rejection was feared from distant friends and people in the workplace, while family was generally described as supportive and non-stigmatizing.
When we explored the reasons for preferring one label over the other, the potential for concealment was repeatedly evoked:
“(…) I would like to have another name that I could use when I will be back in society, so I could tell the truth, but they won’t really understand it. I don’t want to lie so I think I’ll just say I have the salience syndrome, yep, that’s it’ “.
One participant proposed a multiplication of synonyms for schizophrenia, such that each person could invent her own illness label and could conceal it from the rest of the society:
“I am convinced that if we changed the word more often, if there were a thousand different synonyms for schizophrenia, it would help patients. Sometimes it’s this word, sometimes this other, or this other, so people in society wouldn’t really know. Because [schizophrenia] is not well perceived.”
While the power of words and of stereotypes was acknowledged, often reasons for preferring one label over the other were more pragmatically motivated. Pragmatic reasons included: 1) receiving less medication (“As long as they don’t give me too many pills. (laugh)”), 2) prognosis (“Well, because of the [diagnosis of salience syndrome], she didn’t adjust well to life at school”) and 3) social acceptance of symptoms (“…because no one wants to live with someone who hears voices”; “… for the salience syndrome, my family would be more open-minded about it.”).
There were no significant differences in terms of self-stigma (rated on the ISMIS) between individuals when we consider the four diagnostic preferences (preferring schizophrenia, preferring salience, preferring a mix, or refusing all diagnoses). However, when we compared those who preferred the diagnosis of schizophrenia to those preferring the salience syndrome, there was a trend for lower self-stigma on the withdrawal scale in the latter group (t(11)
1.62 vs M
2.0). Given the small N and the lack of power here (and the multiple uncorrected comparisons), this result should be considered with caution, as exploratory.