Dr. Leanne Bogen-Johnsten and a team of researchers published the results of their new qualitative study on what enables voice hearers to share their experiences with others and what serves as a barrier to disclosure. The perspectives of the voice-hearers featured in the research underscore that stigma and negative perceptions of voice hearing present significant obstacles within early intervention programs.
“It is important that EIP [Early Intervention in Psychosis] practitioners recognize and are able to discuss service users’ voice hearing experiences.” Bogen-Johnsten writes. “Conventional approaches have typically discouraged enquiry into the experience of voice hearing, preferring to focus the hearer toward a more objective reality. Enhancing therapeutic skills may build confidence and help practitioners to engage with clients distressed by voices.”
Bogen-Johnston and researchers argue that early detection of voice hearing symptoms is crucial to buffering against future development of distressing psychosis-related symptoms. This study was part of a larger project involving data collection over a longer period. The data were analyzed using both quantitative and qualitative methods.
The recent results were gathered from conducting qualitative interviews with voice hearers. Twenty service-users of Early Intervention in Psychosis (EIP) services in England participated (12 men, eight women). Participant ages ranged from 19 to 35 years old (M = 25), and all participants were classified as experiencing their first-episode of psychosis.
The purpose of the study was to gather perspectives from service-users on their journey with voice hearing including how they have managed it, how it developed over time, and their experiences in therapy. The research question specifically involved investigating what the barriers and enablers are to the disclosure of distressing voices to family, friends, and health professionals. Qualitative analysis was done according to thematic analysis. This involves researchers identifying important themes and patterns across interviews.
Three overarching themes were identified by the researchers: (1) effects of disclosure on the self, (2) effect of disclosure on others, and (3) help-seeking.
The first theme, effects of disclosure on the self, outlined the stages of voice hearing and how it affected the individual.
“Even when voices were acknowledged, if the experience did not significantly affect everyday life, then disclosure was not considered essential. Hearing voices intermittently was not recognized as a problem that required professional help. Voices were accepted as something that occasionally interfered with life and needed no further enquiry.”
In this way, the researchers contend that the first step to disclosure often involved voice hearers identifying their experience as a problem. After this point, voice hearers reported experiences of shame around their experiences, leading them to conceal it from others for fear of embarrassment. However, it was identified that voice hearers eventually felt desperate as their experiences escalated and grew increasingly difficult to tolerate and hide. At this stage, some participants described experiences of monotony and suicidality.
The second theme, effects of disclosure on others, featured participant accounts emphasizing that it was common to think about the impact voice-hearer’s disclosure would have on others, taking into account others’ needs and potential reactions. The researchers especially highlight the ways in which cultural or family narratives about voice hearing and “mental illness” could either encourage or inhibit disclosure. One participant shares why they refrained from telling family members of their experience:
“I just thought like, well my dad, my sister’s suffered with mental illness … I knew that I didn’t want to put any more pressure on my dad … I think I felt a bit scared. I thought of my dad going through all that with my sister I didn’t want to put any more pressure on him. So again it was that thing of not worrying anyone else, sort of deal with it on my own.”
Voice hearers were especially and understandably reluctant to report experiences when anticipating negative responses and judgment from the recipients, the researchers report.
As presented in the third theme, help-seeking, participants reported feeling alone, despite wanting someone to turn to and share their experiences with. This was caused by lack of social support and cultural norms or gendered stereotypes related to the acceptability of help-seeking and expressing vulnerability. One participant explained:
“I was a bit confused. Confused and frightened. I didn’t know who to turn to.”
The researchers proceed to interpret and discuss findings related to mental health stigma and social barriers that manifest as complex personal and interpersonal hindrances to accepting and disclosing voice hearing experiences. They conclude:
“The processes of deciding to disclose voice hearing experiences and seek help are complex, with hearers considering the effect of disclosure upon themselves and significant others. In seeking to reduce the time between onset and treatment for distressing voices, interventions should seek to raise awareness and skill among people most likely to be the recipients of disclosure.”
Bogen-Johnston, L., de Visser, R., Strauss, C., Berry, K., & Hayward, M. (2017). “That little doorway where I could suddenly start shouting out”: Barriers and enablers to the disclosure of distressing voices. Journal of health psychology, 1359105317745965. (Link)