Hearing Voices Research and Development

Program, Research

New communities ready for donors. The research and development team’s project to bring Hearing Voices peer support groups to hundreds of communities across the United States has sent trainers into the field to equip group facilitators in five regions of the U.S. and fostered the creation of a stronger regional and local infrastructure of trained facilitators over the long term. Communities interested in sponsoring a training in their area are encouraged to contact Caroline Mazel-Carlton, Training Coordinator, at 413.539.5941 x316 or Caroline@westernmassrlc.org to learn about costs and training requirements.

Thanks to the generosity of our donors, over one hundred new groups have been planted across the United States and the Pacific Rim. Researchers have collected and are analyzing survey data from group participants, creating a research base that explains the safety and effectiveness of the Hearing Voices approach and motivates health care agencies and insurers to help make Hearing Voices groups accessible in every neighborhood in America.

Where the problem lies

People who hear voices, see visions, or experience other unusual perceptions, thoughts, or actions are often diagnosed as psychotic and given a poor prognosis. The medications used since the 1950s to treat those who suffer in these ways are effective for some but not for the majority; when these medications do provide some symptom relief, their benefits typically diminish over time while destructive physical and psychological side effects become increasingly problematic. Hearing voices in particular remains a challenge for many, many patients even after they have tried every possible medication over many years.

For the past 30 years, the Hearing Voices Network, an international collaboration of professionals, people with lived experience, and their families and friends has been working to develop an alternative approach to coping with voices, visions, and other extreme states that is empowering and useful and does not start from the assumption that such people have a chronic illness (see www.hearing-voices.org, www.hearingvoicesusa.org, and www.intervoiceonline.org).  A large body of research data, published in major professional journals, now provides support for key aspects of this approach, and the hundreds of peer-support groups that have developed in 30 countries across 5 continents are enabling voice hearers – even those who have been chronically disabled – to learn to cope more effectively or to rid themselves of the negative effects of their voices.

Help is on the way

Open Excellence has supported the development of a network of hearing voices peer-support groups across the United States and most recently in Israel.  These groups offer a safe place for people to share their experiences of voices, visions, tactile sensations, unshared beliefs, and other distressing experiences.  By meeting together to help and support one another, to exchange information, and most importantly to learn from each other’s coping strategies, these groups can transform the lives even of people who have suffered for many years.  As a consequence, some people stop hearing voices entirely, once they understand the symbolic significance they have been serving (e.g., to preserve a memory of trauma that has yet to be worked through). Others learn to accept and “live with voices” in ways that enable them to regain more control over their lives.

The current situation in the U.S. stands in striking contrast to that of other countries.  England, for example, with a population of 54 million, has 180 hearing voices groups, whereas the U.S., with a population of 315 million, currently has only a few dozen groups.  Even Australia, whose population is separated by great distances in a challenging landscape, has large and effective regional hearing voices networks.  The Hearing Voices Fund is supporting a systematic program of training intended to create a network of hearing voices peer-support groups in five key regions of the U.S. Participants are being selected using a rigorous model in which mental health professionals and voice hearers collaborate in an intensive shared learning experience that equips them to apply HVN’s concepts and methods to the creation of positive alternatives for people diagnosed with psychosis.

An equally important part of the work is to conduct research that can systematically analyze the mechanisms by which these peer-support groups work.  Personal testimonies and some initial phenomenological studies of people’s experiences in groups suggest promising avenues for more intensive analysis, and the Fund’s research arm seeks to advance this work across the U.S.

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