The Transformational Qualities of Hearing Voices Groups

Introduction

Although trained as a psychologist, with a lifelong interest in extreme states and distressing experiences, I chose early on not to become a clinician. As a teenager, I had discovered the huge but rarely discussed literature created over hundreds of years by people with direct experience of such states, and I found these first-person accounts far more gripping than many of the theories and methods developed by professionals that I learned in graduate school.

Throughout my 40+ years as a professor of psychology, I have taught, studied, and written about the essential contributions that people with lived experience have made to our understanding of the complexities of mental life. But it was not until 2003, while on an extended research trip to London, that I first encountered the Hearing Voices Network (HVN) and fully realized just how fundamentally transformative such contributions could be.

The striking differences between the Hearing Voices approach and anything else I’d ever encountered in psychiatry were immediately apparent—especially in its egalitarian structure and respectful curiosity about a range of subjective experiences. One of the things I’ve always found puzzling about the history of psychiatry is how wide the gap has typically been between the confident convictions of its practitioners and the limited evidence upon which those convictions seem to be based. HVN, in contrast, embraced a non-dogmatic attitude that assumed different interventions would work for different individuals, and even people in highly distressed states could often articulate their specific needs and make sense of their actions and feelings.

Most importantly, the Hearing Voices approach rejected an automatic pathologizing of experiences like voices or visions, instead focusing on the meaning and implications of such states for each individual. Taken together, these distinctive characteristics made this approach seem like a fully realized embodiment of what the authors of the first-person accounts I’d been reading for decades were calling for. It was like seeing their ideas dramatically come to life.

Assumptions of the Hearing Voices approach

The starting assumption of the approach is that voice hearing or any other kind of perplexing or unshared experience has meaning and is not just a symptom of illness; trying simply to stop or block it out may thus not be an appropriate or useful goal.

Mental life is complex, and voice hearing is an experience that has existed throughout human history. The phenomenon means different things in different contexts and to different people. Sometimes it causes distress and sometimes it does not. Many people in the general population hear voices at least occasionally (estimates range from four to 10%); they just may not talk about it.

Voices that are demanding or threatening are understandably the source of greatest distress, both for voice hearers and their families and friends. But this is where interpreting the meaning of the voices—especially their symbolic or metaphoric communications—can be most helpful. For example, threatening commands (for example, not to go out or not to trust someone) often have a protective function. Once the actual risk is understood, the voice often modulates.

Unlike many treatment groups run by professionals, Hearing Voices peer-support groups (HVGs) are guided by shared goals and values, rather than by a set of rules prohibiting or prescribing particular behaviors or attitudes. These shared values are outlined in the HVN Charter (www.hearingvoicesusa.org/hvn-usa-charter), to which groups voluntarily subscribe to the extent their circumstances allow. The goal is to create “spaces of trust, respect, equality, acceptance and mutuality, [which] affirm each person’s right to develop their own understanding of their experiences.”

Our research program

For more than 15 years, I have been collaborating with colleagues from HVN to develop an evidence base for the Hearing Voices approach that could foster its wider use, especially in the United States, which lags far behind other countries (e.g., UK, Netherlands, Denmark, Australia, etc.) in integrating ideas like these into existing mental health services.

Since I myself am not a voice hearer, I have relied upon my colleagues’ expertise, as well as what I have learned from immersing myself in the world of HVGs, where I have served as a co-facilitator and/or participant at hundreds of meetings across the UK and US.

In 2016, our collaborative team of researchers, voice hearers, and clinical psychologists developed a detailed, mostly open-ended questionnaire that could allow us to analyze what precisely goes on in HVGs and better understand why they have spread so rapidly since the 1990s. Groups have been established in 30 countries on five continents, but the literature on HVGs includes only a handful of small studies, so the evidence in support of the approach did not seem proportionate to the intense commitment many members seemed to have to it.

To construct a broad sample, we actively encouraged members of HVGs across the United States to complete our questionnaire, which asks about voice-hearing history, experiences in the group, and impact of group participation. Support from the Foundation for Excellence in Mental Health Care (now Open Excellence) and the Hearing Voices Training Team at the Wildflower Alliance enabled us to recruit 111 participants, the largest sample of HVG members to date, and the first from within the US.

The sample was highly diverse with respect to gender, age, race/ethnicity, psychiatric history, and engagement with HVGs. Each participant responded to the questions in whatever ways seemed appropriate to them (many responses were extensive); in addition, 15 participants (chosen to represent demographic diversity and a wide range of voice-hearing experiences) were invited for follow-up interviews to provide further insight into the dynamics of HVGs.

This rich corpus of data is enabling us to develop a general model of how these groups work and why they are proving so helpful to so wide a range of people.

Findings from our US national study

Our data make clear that the most important characteristic of voice hearing is its variability, so HVGs must be responsive to a wide range of needs and experiences. Some people have heard voices all their lives; for others, the experience began recently. Some people hear voices all the time; others, only in certain circumstances. Some can identify their voices; others cannot. Some hear one voice; others many. Some hear voices that are frightening or make threats; for others, voices are reassuring or helpful. Some people are distressed by their voices; others have voices that enrich their lives, serving as companions or guardians. And some people do not hear voices per se; they have visions, or anomalous olfactory sensations, or they sense presences, etc.

Indeed, despite the nomenclature of the groups, the Hearing Voices approach is explicitly intended to include a wide variety of experiences, subsumed under the category of “hearing voices” as a shorthand for capturing perceptions that are both atypical and often stigmatized. Consequently, people with widely varying experiences come to HVGs, and it is the complex constellation of elements characterizing these groups, and the processes by which these elements interact, that make HVGs uniquely responsive to disparate needs and effective in meeting them.

Because our participants provided such detailed responses in both questionnaires and interviews, we could analyze our data using in-depth qualitative methods, incorporating elements of phenomenology, thematic analysis, and grounded theory. By focusing on both individual experience and group structure, our results offer a broad picture of HVG functioning. (For full reports of our research, see the references and resources below.)

Distinctive characteristics of HVGs:

1. Prioritizing self-determination. A foundational feature of these groups, which serves both to introduce newcomers to the ethos of HVN and set it apart from other interventions, is the priority placed on self-determination. There is no expectation for members to participate in the group in any particular way or with any specified frequency, and no referral of any kind is necessary. They can attend often or seldom, for years or only for a short period, and can leave and then return, even after a long absence.

Further, all types of participation, including silent witness, are welcomed, and there is no requirement for self-disclosure. Thus, from their very first meeting, potential members see the HVG as a place where autonomy is highly valued. No one gives prescriptive or unsolicited advice, and each individual is encouraged to come to their own conclusions about how to understand and deal with voices in the context of their particular life experiences.

Members are not assumed to be too “fragile” to engage with difficult topics. Rather, the member-led nature of the group, and its openness to all forms of contribution, enables people to explore whatever topics they find compelling, in whatever ways seem useful to them. Self-determination is encouraged outside the group as well. For example, role-playing a scenario of standing up to a voice or to someone threatening can affirm a member’s right to self-advocacy and enable them to learn practical skills to enact it when necessary.

2. De-emphasizing behavioral targets or pressure to change. HVGs support members in setting goals for themselves, without judging or assessing their progress. This is a key difference between these groups and interventions where “change” and “improvement” are explicitly valued and routinely evaluated. There is no structured program, sequence of steps, or expected outcome for HVG participants, and they do not need to express a desire to change in order to join the group.

Further, there is no monitoring of any kind, no behavioral targets are set, and no reports are provided to anyone. Nor is there any expectation that members will seek a cessation of their voices; indeed, the respectful, dynamic relationships with voices that are modeled in the group may highlight benefits of their continued presence.

HVGs also affirm a wide variety of life choices and lifestyles, decentering goals like employment or housing, frequently seen in other settings as implicit objectives. Members are encouraged to view the HVG not as a means to a specific end but rather as a laboratory for exploring the complexity of confusing or distressing experiences.

3. Respecting multiple frameworks of understanding. HVGs are unique among mental health supports in respecting any and all frameworks for understanding psychological experience. Each member is assumed to have the right to interpret their experiences in whatever ways make most sense to them, and a particular framework or interpretation need not be shared by other members to be considered valid and meaningful.

By extension, no one way of understanding voice hearing itself is privileged; government surveillance theories are considered as worthy of discussion and exploration as the medical model or trauma-based understandings. Members do not critique each other’s frameworks, regardless of how unusual they may seem.

Perhaps paradoxically, this acceptance and welcoming of so many disparate ways of thinking does not make HVG meetings fractious; if anything, the diversity of perspectives is seen by many members as a sign of respect for the complexity of voice hearing.

4. Cultivating Curiosity. Such deep exploration requires curiosity about all aspects of psychological life. Both facilitators and group members model this attitude—by asking questions to better understand one another, by listening and witnessing fully, and by reflecting on and sharing their own experiences. The tone is open and non-intrusive, with no pressure for anyone to disclose more than feels comfortable or safe.

All experiences and elements of psychological life, including voice hearing, relationships, emotions—no matter how atypical or perplexing—are assumed to be meaningful and worthy of exploration. Even when a familiar topic is discussed (e.g. the medical model, trauma), the focus is on exploring how it is being understood by that individual.

5. Egalitarian collaboration. HVGs explicitly encourage democratic participation. Members are considered “experts by experience” and facilitators do not run things; rather, they model an inclusive interactional style while making clear its limits. Every viewpoint is welcomed, none is privileged over others, and the lived reality of someone’s experience is never challenged.

Indeed, this inclusive orientation means that group members occasionally encounter interpretations or beliefs that challenge or contradict their own. Conflict and disagreements are addressed transparently as they occur, drawing upon core values of the HVN Charter, which hold that each individual is best positioned to interpret their own experience.

Anyone is welcome to share coping strategies, but none is prescribed and the group does not judge or predict what might or might not work for a particular person. Members take mutual responsibility for ensuring that the values of the group are upheld, even by those who are new.

In addition to facilitating egalitarian collaboration through the collective navigation of conflict or disagreement, the HVN Charter explicitly states a commitment to “interrupting words or actions” that are rooted in racism, sexism, or other forms of systematic oppression so that all members can feel welcome. If at any point the core values of respect are put at risk or violated, in words or in actions, the facilitator—and/or the members—will step in to protect the safety of the group and each participant’s right to respect and confidentiality.

6. Fostering genuine relationships. In striking contrast to the rules in many clinical groups, HVGs encourage genuine relationships among members, both inside and outside the group. Everyone is assumed to have something to offer, even when they need help themselves. There is no set structure to meetings, which are entirely participant-led, with dialogue emerging organically.

Nor are group members constrained to any one role: facilitators are encouraged to share their own experiences, and “non-facilitators” are expected to assume responsibility for upholding group values. Members’ sense of mutual responsibility toward one another extends beyond the confines of the meeting, and facilitators make space for sharing contact information and requests for out-of-group connections.

There is absolute confidentiality regarding anything disclosed during HVG meetings, and this is maintained outside the group as well. No records are kept, and members are never discussed at meetings where they themselves are not present. Even in situations when someone is highly distressed, no intervention from service providers, police, or family members will be sought by the facilitator or other group members unless the person themselves requests this.

Three-phase model of HVG operation

To capture the complex sequence of transformation that takes place in HVGs, we proposed a model with three phases. These are not prescriptive, and a given individual may move back and forth among the phases or not go through the whole sequence. The model is intended not as a means of assessment or evaluation but as a useful framing of how HVGs operate, i.e., their mechanisms of action, which hold across groups regardless of their demographic variations (e.g., rural/urban, midwestern/northeastern, long-established/newer, etc.)

Phase 1: Discovery. During this initial phase, group members learn (often for the first time) how widespread and variable voice hearing actually is. From their initial meeting, they are exposed to people with a range of experiences that may or may not resemble theirs. They meet voice hearers who are not disabled by their voices and those who understand their experience using a range of frameworks other than illness models. They learn that voices in adulthood can sometimes be linked to trauma or to childhood sexual and emotional abuse. They discover that there are many ways to respond to voices, that they can be made sense of, and it is possible for voice hearers to live lives far beyond what they, their doctors, or families had thought possible.

Further, members discover a unique context, in which people respond in a curious and non-judgmental way to whatever is discussed, no matter how perplexing or unusual. Few rules apply: no one is required to speak, the range of potential topics is unconstrained (i.e., not limited to “voices”), and members can interact naturally (i.e., with no prohibition on “crosstalk,” but rather an encouragement of dialogue as it naturally occurs).

There is no assumption that members cannot talk about challenging feelings or participate in discussions where such experiences are shared; neither is there any pressure to reveal anything. One participant called the group “a space of radical acceptance, non-judgment, support, and safety.” Another said the HVG offered “effortless understanding”; for another, it was “freedom, mutually created, like a sacred space.”

Consequently, members often report a sense of wonder and relief that experiences long kept secret can be discussed openly. This atmosphere allows for greater curiosity about their own and others’ experiences, less fear about acknowledging or exploring them, and a sense of belonging, connection, and hope (often for the first time and after years of feeling alone, hidden, hopeless, and strange).

In striking contrast to what many had repeatedly been told—that blocking out voices and ultimately having them stop ought to be their only goals—members discover a landscape of possibilities for understanding and change, even for experiences that have long puzzled or concerned them.

Phase 2: Reframing. In this second phase, these discoveries about voice hearing and the functions of HVGs become the grounding for a new kind of exploration. The group’s modeling of self-awareness and self-determination encourages each member to articulate subtleties and variations in their own experience and to situate them within their specific life circumstances. This openness to multiple perspectives and ways of responding to voices, as well as the commitment to “the expertise of experience,” stimulate an iterative process of reframing, in which members evolve an understanding of the nuances of their own psychologies.

With the group’s encouragement, they may try out new ways of responding to voices or learn to negotiate with them, rather than feeling powerless to affect their intensity, tone, frequency, or content. The non-hierarchical structure fosters self-efficacy and mutual responsibility (i.e., “it’s up to each of us to make the group work,” “everyone has something to contribute”). The group becomes a laboratory for exploring new and more authentic forms of relating to oneself and to other people.

As a result, the voice-hearing experience itself often undergoes change. Voices may stop or become more contextualized, or quieter, or clearer, or a person’s relationship with them may start to shift (e.g., become less oppositional or less controlling; empathy, rather than fear, may emerge more strongly). As one participant said: “I am no longer just a pawn to the whims of the voices… I am more in control. My voice matters, not just theirs.”

Phase 3: Change. In this final phase, the discoveries, explorations, and reframings of prior phases coalesce to enable a variety of forms of transformation, both within the group and outside it. Because multiple perspectives on voice hearing are always present in HVGs, and coping strategies are shared in non-prescriptive ways, members are free to try out a range of possibilities without fear of negative consequences. The group’s focus on the individuality of people’s life circumstances encourages each member to develop the “expertise of lived experience” from which to imagine a wider range of possible selves.

Further, by developing skills and modes of coping that fit their own particular forms of distress and available resources, members gain a greater sense of self-efficacy and become more willing to take new chances outside the group.  Knowing that they can always come back—even after a long absence—makes dealing with setbacks easier; with assistance available if needed, members don’t have to abandon a strategy for change just because it doesn’t work right away.

And since a person may well move back and forth among the phases (e.g., trying out a new way of relating to voices may necessitate a reframing of the experience), the HVG can serve different functions at different times. This variability in members’ needs and levels of experience in the group are seen as strengths; people can learn from one another even if their experiences are quite different, and use the examples of others to imagine lives that go beyond their past or current circumstances.

Effectiveness of HVGs

There is no one outcome sought by all members, so there can be no single measure of HVG effectiveness. Nonetheless, 79% of our participants reported experiencing helpful changes in their voices, their relationships, and/or how they understood their voices as a result of attending the group.  These changes took a variety of forms across multiple domains: voices became less bullying, invasive, or frightening; greater empathy and awareness of subtleties of psychological life resulted in increased confidence and efficacy and less shame; and deeper, more satisfying relationships took shape outside the group.

In addition, members reported many forms of behavioral change: reduced need for hospital or crisis services; more limited and targeted use of medication, or tapering off it entirely; better sleep; a return (or an ability now to pursue) important life projects like improved housing, employment, education, and social relationships.

For some members, being part of the worldwide Hearing Voices Movement instils a broader sense of purpose and belonging; many seek out facilitator training to start new groups and expand the approach. As one participant put it: “I didn’t have anyone to turn to when I started hearing voices… I want to be that person for other people.”

Being a member of an HVG can be very powerful, and participants often struggled to find the words to describe how significant these effects can be. “I can’t overstate how important my group is to me,” said one man. “There were tears in my eyes the first time I came.”

In her follow-up interview, one woman said movingly: “For years I had felt that I wasn’t really a human being… I became human in relation to the other members in the group, and then carried that into my relationships with my voices and with other people in my life.” Another participant said: “I just felt sane there in a way I don’t anywhere else … the group creates a context for people to be able to use their experiences instead of being tortured by them.” Another said: “We are not broken; we just have to figure out how to navigate the experience.”

In addition to the thematic and grounded theory analyses that allowed us to identify these general features of HVGs, we analyzed participants’ experiences phenomenologically to better understand the diverse meanings the group could have for each individual. Ayanna,¹ for example, started hearing voices after being repeatedly deployed to a war zone; she still struggles with them even after leaving the military, but the group enables her to make sense of these experiences and understand that they do not automatically mean she is “defective” or dangerous.

Peter, in contrast, who heard voices at a difficult time in his early 20s, was able to learn coping strategies in the group that led to his voices stopping entirely eight months later.

For people whose voice-hearing experiences are more positive, the group can offer a supportive context. Amelia, for example, finds spiritual meaning in her voices and does not want them to go away; however, she has felt isolated in these experiences and found the HVG a safe context to talk about and understand them.

Comparison with other types of groups

HVGs are often compared to other kinds of groups, but our findings demonstrate that their unique constellation of elements and functions actually make them quite different. For example, HVGs are like Alcoholics Anonymous (AA) and other 12-step groups in not being time-limited, but they differ in four key ways: (1) HVGs have a more improvisational structure (unlike AA meetings, which have a set form); (2) they do not present any one framework (unlike the 12-step model); (3) people can “tell their story” in a variety of ways (unlike the standard redemptive narrative required in AA); and (4) and there is no “one and done” format to HVG meetings (as in AA, where you can speak only during your one turn).

HVGs are like psychotherapy groups in focusing on the meaning of perplexing experiences and new ways of narrativizing them. But they are unlike groups based on commonality in diagnosis (e.g., “bipolar support group,” “Schizophrenia Anonymous”) because HVGs make no automatic assumption of pathology. And in striking contrast to how groups are often run in clinical settings with “crosstalk” explicitly prohibited, HVGs encourage a natural, organic structure to discussion, with members interacting as fits the circumstances.

Further, unlike groups run within the mental health system (in hospitals, outpatient clinics, etc.) where attendance is often required (and for inpatients, specified as a condition of discharge), HVGs are entirely voluntary. Clinical groups also often have policies that prohibit members from having contact with one another outside meetings, whereas HVGs encourage the development of “authentic relationships,” both inside and outside the group setting, deep connections based on trust and vulnerability. “You’re not just talking to someone paid to listen to you, or who is forced to be there,” is how one participant put it.

Regardless of whether HVG members develop close relationships outside the group, they recognize the power of a way of interacting which treats others’ experiences with respect and shared curiosity no matter how different or perplexing they seem. Without such a stark division between “treatment” and “real life,” insights gained in HVGs can often be integrated more seamlessly into daily life.

Yet despite these differences, HVGs are often used as a complement to clinical treatment groups or other services, and they can be integrated to some extent into traditional mental health settings. Indeed, it may well be that participating in these groups can equip voice hearers to make use of mainstream services with a greater degree of self-determination, allowing for a richer experience across multiple domains.

Final thoughts

This work has had profound consequences for how I think about psychology—my own, and that of others, far beyond the population of voice hearers. The non-judgmental curiosity that is core to the Hearing Voices approach fosters an articulation of inner experience that can be helpful to anyone. And the openness to creative coping strategies—whatever works for each person, however idiosyncratic, so long as it does no violence to others—inspires a broader range of alternatives and attentiveness to the contours of individual experience.

Although I have never heard voices, my life has been transformed by the Hearing Voices approach. I have witnessed first-hand how people written off as “treatment resistant” or “chronically ill” could work their way through even the most frightening or bewildering states and emerge into radically new lives through participating in HVGs.

I have had to radically revise much of what I learned in my training as a psychologist and take even more seriously the expertise of lived experience. In so doing, I have gained an empowering and useful way of coping with my own life challenges and a renewed appreciation for the human capacity of resilience and healing.

 

Want to know more? Here are some links to our work and relevant resources:

Gail A. Hornstein, Alison Branitsky and Emily Robinson Putnam (2021). The diverse functions of hearing voices peer-support groups: Findings and case examples from a US national study. Psychosis: Psychological, Social and Integrative Approaches, DOI:  10.1080/17522439.2021.1897653

Gail A. Hornstein, Emily Robinson Putnam & Alison Branitsky (2020): How do hearing voices peer-support groups work? A three-phase model of transformation, Psychosis: Psychological, Social and Integrative Approaches, DOI: 10.1080/17522439.2020.1749876

Gail A. Hornstein (2018), Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness (revised and expanded ed.). NY: Routledge. (UK edition, PCCS Books, 2012)

Resource List on Hearing Voices, available for free download from www.gailhornstein.com

www.hearingvoicesusa.org

www.intervoiceonline.org

http://beyondpossiblefilm.info/

https://openexcellence.org/

https://wildfloweralliance.org/