Hearing Voices Research & Development Fund

10
88

 

The Hearing Voices Research & Development Fund is a fund under The Foundation for Excellence in Mental Health Care.written by Gail A. Hornstein and Jacqui Dillon

Hearing Voices Research & Development Fund
The Hearing Voices Research and Development Fund has been established to advance the development of the Hearing Voices Approach in the U.S. The Project was created by Gail A. Hornstein, Professor of Psychology at Mount Holyoke College, and Jacqui Dillon, National Chair of the Hearing Voices Network in England, who have been working together for 10 years to bring new approaches to understanding and coping with voice hearing.

Background
People who hear voices, see visions, or experience other extreme states often end up being diagnosed as psychotic (usually with schizophrenia) and a poor prognosis. The medications which have routinely been prescribed for such patients since the 1950s are effective for some but not for others, and even when they do work, 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 been tried on every possible medication over many years, and continues to be seen by many psychiatrists as a “treatment-resistant” symptom.

Hearing Voices Approach
For the past 25 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 people who have these experiences suffer from a chronic illness. A large body of research data, published in major professional journals, now provides support for key aspects of this approach (see references below), and the hundreds of peer-support groups that have developed in 20 countries around the world are enabling voice hearers – even those who have been chronically disabled – to learn to cope more effectively or rid themselves of the negative effects of their voices. These groups are now starting to spread across the US, but the lack of a systematic program for training potential facilitators and others interested in incorporating HVN’s work into their research or teaching is holding the United States back from being able to offer this effective, community-based psychosocial alternative to the current risky practice of large-dose, long-term treatment with (usually multiple) medications.

Hearing voices peer-support groups offer a safe place for people to share their experiences of voices, visions, tactile sensations and other unusual experiences and perceptions. People meet together to help and support each other, to exchange information, and to learn from one another’s coping strategies. Groups also offer an opportunity for people to accept and “live with voices” in a way that enables them to regain some control over their lives.

The situation in the US stands in striking contrast to that of other countries. For example, England (a country with a population of 60 million) has 180 hearing voices groups, and Denmark (a country of 5 million) has several dozen, whereas the US, with its population of over 300 million, currently has only about 15. The fund will support the development of HVN groups across the US by providing a systematic program of training that will create a network of hearing voices peer-support groups in key centers in each region of the country. Participants will be 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.

Hearing Voices Research
The fund will also support a research study to provide the kinds of basic phenomenological descriptions of the voice hearing experience that have become increasingly essential to other research in this area.

Even though more and more researchers have become interested in investigating the complexities of voice hearing in and of itself (as opposed to treating it simply as one of a number of so-called “positive symptoms” of schizophrenia), the lack of a clear identification of the defining characteristics and significance of the experience for voice hearers makes it difficult to compare results across different studies. In addition, as colleagues from HVN have highlighted in their work (see references below), there is no evidence for the standard assumption that patients who hallucinate cannot articulate the triggers, contextual variability, or meaning of their experiences. The few phenomenological studies that have been conducted thus far demonstrate clearly that understanding the subjective experience of voice hearers themselves is essential to the ultimate effectiveness of any intervention designed to help them.

For More Information:

www.hearing-voices.org
www.intervoiceonline.org
www.hearingvoicesusa.org
www.gailhornstein.com
www.jacquidillon.org

To contribute to this fund copy and paste in your browser:http://femhc.org/Giving.aspx#Hearing_Voices_Research__Development_Fund

Selected References
Beavan, V. (2011). Towards a definition of “hearing voices”: A phenomenological approach. Psychosis: Psychological, Social and Integrative Approaches, 3, 63-73.

Dillon, J. (2006, November). Collective voices. Open Mind.

Dillon, J. and E. Longden (2012) Hearing voices groups: Creating safe spaces to share taboo experiences. In M. Romme and S. Escher (eds.), Psychosis as a personal crisis: An experience-based approach. London: Routledge.

Honig, A., M. Romme, B. Ensink, S. Escher, M. Pennings and M. Devries (1998). Auditory hallucinations: A comparison between patients and non-patients. Journal of Nervous and Mental Disease, 186, 646-651.

Hornstein, G.A. (2009). Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness. New York: Rodale Books. (UK edition, with a new introduction, PCCS Books, 2012)

Johns, L.C., J. Y. Nazroo, P. Bebbington and E. Kuipers (2002). Occurrence of hallucinatory experiences in a community sample and ethnic variations. British Journal of Psychiatry, 180, 174-78.

Lakeman, R. (2002). Making sense of the voices. International Journal of Nursing Studies, 38, 523-531.

Martin, P.J. (2000). Hearing voices and listening to those that hear them. Journal of Psychiatric and Mental Health Nursing, 7, 135-141.

Romme, M. and S. Escher (1989). Hearing voices. Schizophrenia Bulletin, 15, no. 2, 209-216.

Romme, M. and S. Escher (eds.). (1993; 2nd ed. 1998). Accepting Voices. London: MIND Publications.

Romme, M. and S. Escher (1996). Empowering people who hear voices. In G. Haddock and P. Slade (eds.), Cognitive Behavioral Interventions with Psychotic Disorders. London: Routledge, pp.137-150.

Romme, M. and S. Escher (2000). Making Sense of Voices: A Guide for Mental Health Professionals Working with Voice-Hearers. London: MIND Publications.

Romme, M. and S. Escher (2005). Trauma and hearing voices. In W. Larkin and A. Morrison (eds.) Trauma and Psychosis: New Directions for Theory and Therapy. London: Routledge.

Romme, M., S. Escher, J. Dillon, D. Corstens and M. Morris (eds.). (2009). Living with Voices: 50 Stories of Recovery. Ross-on-Wye, UK: PCCS Books.

Romme, M., A. Honig, E.O. Noorthoorn and S. Escher (1992). Coping with voices: An emancipatory approach. British Journal of Psychiatry, 161, 99-103.

Sayer, J., S. Ritter and K. Gournay (2000). Beliefs about voices and their effects on coping strategies. Journal of Advanced Nursing, 31, 1199-1205.

 

 

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

10 COMMENTS

  1. This is very exciting!

    We are very interested in seeing the expansion of Hearing Voices groups in the US. I can’t think of another peer-led movement that demonstrates as powerfully the effectiveness of peer support, individual empowerment and the positive impact of embracing mental diversity and a continuum to mental health rather than the false dichotomies inherent in an either/or, diseased/normal symptom-focused approach to mental health.

    To see HVN embraced and funded as part of the Foundation’s “new mainstream” is very exciting and certainly does redefine “mainstream.”

    We look forward to following the progress of this HVN expansion and education project and to using HVN groups as a resource for our Mother Bear Community Action Network families!

  2. “England (a country with a population of 60 million) has 180 hearing voices groups”

    Somebody please wake them up. They are the most intellectually gifted people on the planet and I’m quite very surprised at you! Open your Bibles, England and focus on CHRIST, not Satan.

    WAKE UP, England!

  3. Hmmm, in the Bible there are numerous accounts of people hearing God’s voice. Not all voices are bad, inner or outer. Neither are all voices good, inner or outer. Faith can be one of many effective tools for discerning the difference and finding peace and purpose. Not sure the threat of eternal damnation is very healing for those hearing voices, in fact, they may already be hearing that voice…

    • Do you know England’s history? *smile*

      There are all sorts of people who experience “voice hearing” but they have a few differences:

      1. They don’t have psychiatry and “diagnosis” in their way
      2. They use a different vocabulary to identify what they experience
      3. They do not suffer; their experience is Joyful and Rewarding

      First is Magenta Pixie (from England) who is a “channeler”. Channeling is a Psychic function of Psyche. Psyche by definition means Spirit.

      http://youtu.be/HgYRdKeQvtk

      Second is Anna (from Michigan) who is a “prophet”, and experiences TRUE Holy Communion. Holy Communion is communication with the Divine. Anna does not use the term Psyche. She uses the more correct term; Spirit.

      http://youtu.be/jGlG_BGld_c

      Both of these women have a clear channel / clear mind. They have direct connections to the sources that they communicate with.

      The Bible is largely about the Mind itself (and the SPIRIT).

      Secularists lack knowledge and understanding.

      One cannot say that Psyche is real and exists, but then say that Psychic is not real and does not exist.

      Psyche is not a disease or disorder, and neither is Spirit.

      And yes, there are malevolent Spirits and there are true sins and there are Spiritual Consequences, in addition to Natural Consequences. Yup.

  4. This is my first comment on this site. I have been reading here off and on for a while, but have only just now registered in order to leave a comment on this thread.

    I am 59 years old, happily married to my best-ever friend, the mother of 3 adult children, and 3 grandchildren. Now that my first great-grandchild is on the way (due in February), I feel an urgent need to search out some practical healing answers for all the pain and dysfunction that has been passed down through the generations of my family.

    In 1967, when I was 14 years old, I joined a group of my school friends who were holding seances. One of the tools they used was a Oui Ja board that one of the girls had received as a gift. My paternal grandfather had died a few months before, and I was hoping to contact his spirit. I wanted assurance that my loving grandfather still existed somewhere.

    After several sessions with the oui ja board, which did seem to be contacting some kind of spirit, but not my grandfather, one of my schoolfriends loaned me a book that contained detailed instructions for contacting the dead. This book had step-by-step directions on everything from autonomic handwriting, to going into a trance and allowing a spirit to take over your body and speak through your mouth.

    I was 14. I didn’t know what I was getting myself into.

    Ouch, this is painful. After more than 45 years of keeping this part of my life mostly hidden, putting what happened to me into words is not easy. I’m going to take a coffee break and after I stop shaking inside, I will come back and finish what I want to share of my personal experience with hearing voices.

    But first, I want to say this: Having a condescending attitude is not only disrespectful, I have found it to be very counter-productive, because nothing will close a person’s mind faster than the sense that he or she is being talked down to. I know that I have been terribly guilty, myself, of being condescending in the past, especially when I was a lot younger and was sure that I knew it all, or at least that I knew everything worth knowing. But the things I have learned since I knew it all, have forced me to aknowledge that the things I do not know, far outweight the things I know, on just about any topic you can think of: history, science, physics, astronomy, literature, religion…. in truth, there are whole categories of things that I know next to nothing about, despite my well-above-average IQ.

    I learn so much more from the simple, respectful, open-minded and open-hearted exchange of ideas and experiences, than from lectures.

    Just my two cents worth~

    Alainn

  5. OK… as I was saying: In 1967, when I was 14 years old, I joined a group of my school friends who were holding seances. One of the tools they used was a Oui Ja board that one of the girls had received as a gift. My paternal grandfather had died a few months before, and I was hoping to contact his spirit. I wanted assurance that my loving grandfather still existed somewhere.

    After several sessions with the oui ja board, which did seem to be contacting some kind of spirit, but not my grandfather, one of my school friends loaned me a book that contained detailed instructions for contacting the dead. This book had step-by-step directions on everything from autonomic handwriting, to going into a trance and allowing a spirit to take over your body and speak through your mouth.

    After several attempts to follow the instructions in the book (I can’t remember the name of it, but it may as well have been called “Spiritism for Dummies”), I was successful with the autonomic handwriting. My hand seemed to have taken on a life of its own, writing words, sentences, and whole paragraphs of things of which I had no prior knowledge in my head. The things that my hand wrote while I was in a self-induced trance, was as much of a surprise to me as if someone else was writing those words.

    My autonomic writing stated that the writer was the ghost of a man who had been hanged for a crime he did not commit, and he wanted to protest his innocence.

    Next came frightening, loud, distracting voices inside my head, a multitude of voices, the voices of men and women of all ages, and even a few children. All of the voices claimed to be the ghosts of people who had died unexpectedly and were lost in a terrible endless void, seeking a way out, and I was that way out.

    To say that I was terrified doesn’t even begin to describe it! Suddenly, my life was a horror movie, a nightmare I could not wake up from.

    Until this time, I had always been a perfectly normal child. I made excellent grades in school, I got along well with my friends, and I was helpful and obedient at home. My favorite thing to do was read, and I had dreams of going to college and becoming a writer. But now I had “ghosts” living inside my head, talking to me, talking to each other, and trying to take over my body! I couldn’t make them leave, no where in the spiritism book did it say how to make them leave! I begged them to go back to where they had come from, and they just mocked me. So I told my mother about the seances, the autonomic handwriting, and the voices, and was promptly taken to a hospital, diagnosed with schizophrenia, and then, after our health insurance ran out, I was committed to an insane asylum for two years.

    The voices went away after a social worker, who said she couldn’t understand why I was in a mental institution when I seemed so “normal,” asked for my version of what was wrong with me, and when I told her the story behind my voices, she suggested that all that had happened to me was that I had hypnotized myself into believing that spirits would be talking to me and through me, and so my hypnotized mind had made it seem to come true; it was like I was having a dream, while I was awake. She advised me to try hypnotizing myself again, and then telling myself that the spirits were not real, and that when I woke up, the voices would all be gone.

    I did what she suggested, and it worked. No more voices!

    But today, more than 45 years later, I am still living with the lifelong consequences of my “crazy label.” In my unenlightened family of origin, I am still considered “mentally ill,” and everything I say and do is discounted. My self-esteem, after a lifetime of being treated as “less-than,” is practically non-existent.

    I also suffer from chronic and severe Post Traumatic Stress from the traumas I went through it that horrible institution, and also from the abuse I’ve endured in many of my adult relationships, because most “normal” men don’t want to get seriously involved with someone who has a history of schizophrenia and being institutionalized, but users and abusers seek women like me out like prey.

    The traumas that I went through as a teenage mental patient were many and terrifying, and can still give me nightmares even after all these years. I was one of those who was experimented on in the late 1960s with a drug that actually made my hallucinations and delusions far more severe. This was done without my knowledge or consent, of course, I was a 15-year-old “ward of the state” and had no rights whatsoever.

    One day I confessed to one of the nurses that my insanity suddenly seemed to be getting so much worse, for now the walls were breathing in and out, the floors were heaving up and down, and the furniture was moving around as though it were alive. Then the nurse took pity on me and told me that a secret that she said could cost her her job: I was being given an experimental drug that was having similar hallucinatory effects on many of the other patients who were also part of that experiment.

    The drug that was being tested, came in the form of a tiny round red pill, about the size and shape of a B-B gun pellet. I was soon taken off of that drug, but I continued to have “flashbacks” from it, for years. There were times, many years later, after I was married and a mother, when I would be driving the car with my baby in his little seat, when suddenly the road would start heaving up and down and the steering wheel would come alive like a snake in my hands, and I would have to pull off the road and wait for the flashback to pass.

    I have only recently discovered, through online research, that the experimental drug I was given as a 15-year-old mental patient was probably LSD. I no longer have flashbacks from that long-ago experiment, but I still struggle today with the normal psychotropic medication that I have been prescribed for years, for my PTSD and depression. I am ultra-sensitive to medications and chemicals of all kinds, which is a problem I did not have before I was pumped full of Thorazine and other anti-psychotics during my teenage years.

    When I was locked up in a mental institution at the age of 14, I had never committed a crime beyond petty childhood shoplifting (for which I had never caught, by the way), nor had I ever been violent or threatening in any way toward anyone, not even violent toward myself. But I have lived my entire life since then under the stigma of “mental illness.”

    To this day I still am not entirely certain about what really happened to me. Was my 2-year-long psychotic episode nothing more than a childish experiment in self-hypnosis-gone-bad? Were the spirits real? If they were real, were they actually the ghosts of people who had died, as they told me they were, or were they demonic, as they seemed to be, with their abusive words and brutal effects on my life? Or was I really mentally ill? If so, what caused it? It could have been caused by trauma, there was a lot of extreme abuse in my childhood home. It could also have been genetic, my own father, who was a fundamentalist minister, became very ill when I was 12 and came so close to murdering my mother that I thought she was dead. He was arrested, then hospitalized, and then diagnosed schizophrenic and with multiple personality disorder, which my father really did seem to have, going back to my earliest memories.

    I really don’t know the answer to the question of what happened to my mind when I was 14 to 16 years old. I prefer not to believe that ghosts or demons are real, because spiritism is creepy and scary and it doesn’t stand up too well to scientific examination. But the ghostly voices and visions certainly seemed real to me at the time. I wasn’t the only one in my circle of friends who had problems with seeing and hearing spirits as a result of our seances, either. One of the boys from our group ended up in the same mental hospital where I was, with the same diagnosis, schizophrenia. Like me, he had never had any kind of mental or emotional problems before getting involved with the oui ja board and seances.

    Sorry this is so long… wow, it’s the first time that I have ever written out this whole story! For me, the bottom line is that, after my terrible experience with hearing voices, I would like to strongly, but respectfully, caution people against seances, oui ja boards, self-hypnosis, or in any way encouraging the hearing of voices.

    Peace,
    Alainn

    • I found this and thought of you. While I personally do not fully agree with everything found on this webpage, some of it is useful.

      http://www.christiananswers.net/q-esp/esp-wiccans.html

      Your personal account is intense.

      re: “My hand seemed to have taken on a life of its own, writing words, sentences, and whole paragraphs of things of which I had no prior knowledge in my head. The things that my hand wrote while I was in a self-induced trance, was as much of a surprise to me as if someone else was writing those words.”

      Lyrics from The Piano:

      “My fingers sting, Where I feel your fingers have been, Ghostly fingers, Moving my limbs” ~ PJ Harvey, English musician, singer-songwriter, composer and occasional artist.

      Alainn, I am sorry that your young life was so pained and consequential. I hope your grandchildren accept your Guidance and Wisdom and appreciate your desire for Health (Healing) and Quality of Life, for your Family.

      Yes, it is true – the Spirit life can and does have a dark side but it also has the most brilliant Light and of course, as you know, you are welcome to it.

      http://spiritlibrary.com/

LEAVE A REPLY