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The Hearing Voices Movement in the United States: Findings from a national survey of group facilitators

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Abstract

Empirical research on naturalistic hearing voices movement groups (HVG) has been limited to date. In an effort to better understand facilitator perspectives and variations in the structure of groups in the USA, we conducted a facilitator-led national survey of HVG facilitators. The survey included both close-ended and open-ended questions and was available online for 1 year. Participants were asked about the structure and composition of their groups, their perspectives on membership, clinician involvement, facilitator training and perceived impact of group participation on members. Thirty-two facilitators participated. The results underscore the diversity of HVG in the USA. The authors highlight three findings of interest: (1) participants’ disagreements or uncertainty regarding a narrower HVG focus on experiences that would traditionally be described as “sensory hallucinations” versus a broader subset of extreme or unusual experiences (including “beliefs”); (2) tensions regarding HVG collaboration with clinicians; and (3) insights into impact.
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... The groups appear to improve attendees' functioning rather than reducing the frequency or intensity of voice hearing itself. The existing evidence base suggests improvements in coping skills (Beavan et al., 2017;Newton et al., 2007;Ruddle, 2017) understanding (Jones et al., 2016); hope (Nkouth et al., 2010); social support (Goodliffe et al., 2010;Longden et al., 2018) and self-efficacy (Beavan et al., 2017). These findings suggest similar functional benefits to the wider evidence-base for peer support for those who experience severe mental health problems (Davidson et al., 2012). ...
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Background: An initiative was proposed to integrate local Hearing Voices Groups within statutory adult mental health services in a particular NHS Trust. The aim of this service evaluation was to assess clinician’s attitudes towards, and understandings, of the groups to better inform the proposal.Methods: Multi-disciplinary NHS staff members were invited to participate in a brief survey on their attitudes towards and understanding about Hearing Voices Groups. The survey was co-produced with people with lived experience of hearing voices, and local mental health professionals. Content analysis was used to analyse qualitative data from an additional free text section of the survey.Results: Forty mental health professionals responded to the survey. There was majority agreement (>50% agreement) on all items related to perceived benefit of Hearing Voices Groups. The findings also showed that only 25% of respondents felt that they were aware of the evidence base for Hearing Voices Groups and only 30% felt confident explaining Hearing Voices Groups to service users.Conclusions: The data suggest that the majority of mental health professionals hold positive attitudes towards Hearing Voices Groups. However, many expressed uncertainty about the evidence base and discussing the groups with service users, highlighting further training needs in these areas.
... At other times, the person might believe the voice to originate from a spiritual entity or otherworldly force, a technological device, or another human who is unseen at the time of utterance. Although the many determinants and meanings of heard voices are beyond the scope of this article, it is important to note that heard voices are not (even within conventional definitions) necessarily or always a signifier or so-called "symptom" of "psychopathology," as is commonly assumed (see Woods, 2015), but rather-as extensive epidemiological work (see van Os, Linscott, Myin-Germeys, Delespaul, & Krabbendam, 2009) and the efforts of grassroots movements such as the Hearing Voices Network have demonstrated (e.g., Hearing Voices Network, 2018a; Jones, Marino, & Hansen, 2016;Jones & Shattell, 2013; see also Watkins, 2000)-a diverse, heterogeneous group of experiences that are more often than not meaningfully related to the person's life history and contexts (e.g., Longden, 2017;Wilkinson & Anderson-Day;Wilkinson & Bell, 2016;Woods, 2015), can (as aforementioned) be pleasant or friendly as well as distressing (Woods et al., 2013;Woods et al., 2015), are frequently transient or intermittent, and quite often occur in nonclinical populations-in other words, in persons who do not seek clinical care and do not meet criteria for a psychiatric diagnosis (van Os et al., 2009). Voice hearing is increasingly investigated and conceptualized outside of conventional biomedical arenas (e.g., Watkins, 2000;Waugh, 2015)-especially in international and interdisciplinary scholarshipand is currently the focus, for example, of large multidisciplinary study in the United Kingdom (see Hearing the Voice, 2019). ...
... To make sense of the aftermath is to determine-and often limit-possible futures (Hopper 2007). To manage this uncertainty, psychiatric treatment-as-usual often turns to medication and restraint, dampening psychotic symptoms under the assumption that their absence makes way for reason and a return to normalcy (Jones, Marino, and Hansen 2015;Luhrmann 2001;Rhodes 1995). These contexts mark moments in the peers' histories during which they have been psychically (and sometimes physically) wounded: many have been hospitalized against their will, heavily sedated and physically restrained, prescribed medication without explanation, and seen their futures foreclosed as diagnostic categories redefined their personhood (Estroff 1985;Luhrmann 2007;Myers 2016). ...
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What does it mean to offer care when the act of caring is wounding to its giver? For peer specialists—individuals with lived experience as patients in the psychiatric system—this question shapes how they use their own histories to provide support for individuals experiencing psychiatric crisis. Peer support is unique in the way it draws on empathetic resonance and depends on carefully deployed vulnerability; where one connects with others through the recognition of shared experience and mutual hurt. For peers, care works when this guidance, reassurance, and "being with"—all of which draw upon their own stories of traumatic history and variegated suffering—mitigate the present crisis being experienced by another. Drawing on twenty-eight months of fieldwork with a peer-staffed crisis respite center in the eastern United States, I argue that the peer specialist becomes the embodiment of a novel intersection of intimacy and compensation; one that poses vulnerability not as a consequence, casualty, or risk factor in the commodification of care, but as its principle vector of resonance and the assumption on which it is based. For peers, care that works—in that it creates a mutual resonance for the recipient—becomes simultaneously care that wounds its giver.
... Jones and colleagues [74] recently conducted a facilitator-led national survey of 32 Hearing Voices Group facilitators. Participants were asked about the structure and composition of their groups, their perspectives on membership, clinician involvement, facilitator training and perceived impact of group participation on members. ...
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The meanings and causes of hearing voices that others cannot hear (auditory verbal hallucinations, in psychiatric parlance) have been debated for thousands of years. Voice-hearing has been both revered and condemned, understood as a symptom of disease as well as a source of otherworldly communication. Those hearing voices have been viewed as mystics, potential psychiatric patients or simply just people with unusual experiences, and have been beatified, esteemed or accepted, as well as drugged, burnt or gassed. This book travels from voice-hearing in the ancient world through to contemporary experience, examining how power, politics, gender, medicine and religion have shaped the meaning of hearing voices. Who hears voices today, what these voices are like and their potential impact are comprehensively examined. Cutting edge neuroscience is integrated with current psychological theories to consider what may cause voices and the future of research in voice-hearing is explored.
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Purpose – The distress that is associated with auditory hallucinations, or voices, is well documented. However, increasingly research into this phenomenon is also capturing those who cope with their voices, and live meaningful lives. Peer support is a popular and useful way in which to learn to manage the distress for voice-hearers. The Hearing Voices Network (HVN) acts as an umbrella organisation for which research, training and peer support groups exist (www.intervoiceonline.org). Despite the growing amount of peer support groups established, there is to date no published material on these groups. The purpose of this paper is to discuss these issue. Design/methodology/approach – The present study used Interpretive Phenomenological Analysis to explore the experiences of four informants across three New South Wales HVN groups. Findings – Results suggest that the social connections, value of sharing and desire for more group members are all important within the group. Beyond the group, informants described the increased willingness to talk to others about their voice experiences, improvements in sense of self and a positive change in their relationship with their voices. Originality/value – The study demonstrates the importance of peer participation in the mental health workforce and the provision of safe spaces for those with lived experience to share and learn from each other in meaningful ways. Research implications include the need for further research measuring outcomes on a larger scale for these support groups.
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This paper reports on the methodology, results and conclusions from a study of 50 voice-hearers’ stories of the experience of their recovery process. The original text includes full first-hand accounts and this paper provides details of questions put forward in order to analyse the information from these reports. It also discusses how these questions were derived from earlier studies. The results are presented as identifiable steps towards recovery. The conclusion accentuates evidence that assuming voice-hearing is a psychotic symptom might not be justified. The study identifies the opportunities that become available when psychiatric services recognise voice hearing as an acceptable and understandable variation of human experience.
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This article considers what the Hearing Voices Network can offer to mental health social work. It combines an extensive literature review of voice hearing by Bob Sapey and the expertise by experience of Peter Bullimore who runs a peer support group for voice hearers. Findings The re-framing of auditory hallucinations as voice hearing has significantly changed the way many voice hearers have been able to understand their experience. This new approach to working with voices was developed at the University of Maastricht, principally by social psychiatrist Marius Romme. By moving away from biological explanations of brain disease to psychological understandings of emotions, Romme and his colleagues have found ways of helping people cope with voices, rather than trying to get rid of them through medication. This has led to a network of voice hearing groups throughout the world. There is much of what happens in these groups and within the social psychiatric responses known as the Maastricht approach that can be practiced by social workers. Applications The Maastricht approach to working with voices challenges the basis of pharmacological responses to psychosis and moves beyond anti-psychiatry by offering positive alternatives to the current biomedical treatment of schizophrenia. This approach can be undertaken by experts by experience and mental health professionals. We describe these approaches and argue that in adopting them, social workers can help voice hearers cope both with the content of their voices and the stigmatising responses to being diagnosed with schizophrenia.