QUESTION: I am a supporter of someone who hears voices or has other unusual sensory experiences. Can I come to the support group too?
Yes, support group participants are welcome to bring their supporters with them.
As well, the study club is open to everyone, even people in the community who just happen to be interested.
QUESTION: I am a student interested in learning more. Can I come to the groups?
You are welcome to come to the study club, but the support groups are meant for people seeking support for themselves and for those that come to support them.
QUESTION: Do I have to rsvp or register for one of the groups based on the hearing voices network?
No you do not have to rsvp or register. All of our groups are drop in groups, though you may want to join the e-list for the study club by phoning 504-708-5276 and leaving your name, email address and indicating you wish to be added to the list. This will ensure you get reminders about the study club and any reading material we will be discussing emailed to you.
QUESTION: I didn’t read the article the study club will be discussing. Can I still come?
Yes, you are still welcome to come and take part in our discussion even if you haven’t read the article scheduled to be discussed. As well, please be aware sometimes we watch a video or listen to a podcast together and then discuss that instead of discussing an article.
QUESTION: I am not a mental health services client, but I have unusual sensory experiences. Can I come to the support groups?
Yes, you are welcome to come. You do not have to be a mental health team client in order to attend.
QUESTION: Do I have to have a diagnosis of schizophrenia, bipolar affective disorder, or some other mental health condition in order to come?
You are welcome to come. Our groups are open to everyone who has unusual sensory experiences regardless of cause.
QUESTION: What is the difference between the support groups and the study club?
The support groups are meant for people with unusual sensory experiences to share their experiences and insights among peers and find support. The study club can also be a source of support and people do share personal experience, but is focused around discussing an article, video or podcast related to the international hearing voices network. The study club is more of a discussion group than a support group. Also, the support groups are geared toward those with unusual sensory experiences seeking support whereas the study club is open to anyone.
QUESTION: What are the benefits and challenges of the program?
ANSWER: Karen Wong, a UBC masters of social work student summarized them as follows:
- Welcomed by people hearing voices and some professionals
The program is an approach welcomed by people hearing voices (Longden, 2013). (The benefits to the people hearing voices will be further elaborated later.) The program is also welcomed by some service providers in the mental health system such as social workers and nurses because it matches the empowerment values of these professions (Corren & Lucas, 2004; Sapey & Bullimore, 2013)
- Increase support and reduce isolation
People hearing voices often feel isolated because they hear the voices which other people do not. Through joining the program, service users said that they connect with peers who also hear voices (Dillon & Longden, 2011; Ruddle et al., 2014). This normalize their hearing voice experience. They share experience of hearing voices, feelings and emotions, and coping ways (Dillon & Longden, 2011; Payne et al., 2017). They support each other. They thus feel less isolated. They also find less fear, anxiety and distress of the voices they hear because they know that they are not alone (Corren & Lucas, 2004). Through relationship building with peers, the program becomes a safe and supportive space for them (Dillon & Longden, 2011). Some service users find the program the key support when they have relapses (Corren & Lucas, 2004).
- Normalize the experience
The program sees hearing voices as a survival strategy of insane emotional experience instead of mental illness or brain distortion (Longden, 2013; Sapey & Bullimore, 2013). It normalizes hearing voices as a part of human experience instead of illness (e.g., using the terms “hearing voices” instead of “having auditory hallucinations”) (Corstens et al., 2014; Sapey & Bullimore, 2013). This is explained to not only service users, but also their families (e.g., parents having children hearing voices) (Intervoice, 2020). This thus reduces the feeling of stigma to service users and their families. Some service users will even discuss the stigma from the society on their hearing voices experience and how this affects them (Corren & Lucas, 2004).
- Better coping and hopes
Through the program, service users said that they make more sense of hearing voices (i.e., what hearing voices means to them) (Dillon & Longden, 2011). They become more accepting to hearing the voices (Oakland & Berry, 2015). They learn to be more confident by speaking about their experience (Corren & Lucas, 2004). They learn to cope better with hearing voices by learning from the experience of their peers and appreciating their internal strengths and resilience (Dillon & Longden, 2011). They learn to live with hearing the voices (i.e., recovery in hearing the voices) (Corren & Lucas, 2004). They grow from the experience (Payne et al., 2017). They have hopes of their recovery (e.g., being inspired by sharing from peers who successfully cope with hearing voices) (Longden, 2013; Oakland & Berry, 2015).
- Build identity
Through experience connecting with peers, some service users even build a sense of identity being a person hearing the voices. They educate people who do not hear voices (e.g., mental health service providers) to understand how it is like to hear voices and thus reduce the stigma from the society on people hearing voices (Corren & Lucas, 2004; Longden, 2013).
- Reasonable cost
The program should be reasonable in terms of costs to the mental health system because of its group format (instead of individual treatment).
Risks of hearing voices support group
Some psychiatrists and families consider that the program is anti-psychiatry and against medication:
- They concerned that the program over-emphasizes hearing voices as a result of emotional experiences and trivializes that it can be related to mental illness and brain distortion (Inman, 2016).
- They said that the program discourages medication and suggests that medication will hinder emotional expression, which is believed to be a way to heal hearing voices related to emotional experience. However, while some people in mild condition may not need medication, people in severe condition do need medication, especially when the condition is related to mental illness and brain distortion (Inman, 2016). The longer they do not have the medication, the worse health outcomes they would have. This would put them in danger.
- Hearing voices may only be a part of the mental illness. The mental illness may have other presentation, for example, cognitive distortion. People need to take medication so that the cognitive distortion will not severely impact their school or work (Pies, 2014).
- The hearing voices program is not against medication (Payne et al., 2017; Sapey & Bullimore, 2013). It just provides an alternative support to people hearing voices. Many service users of the program are those who tried the medication approach, but it did not work, and thus look for an alternative.
- Some service users take medication while attend the group – These two are not contradictory. Some will even use the group opportunity to discuss the pros and cons of taking different types of medications and how to cope with the cons of the medications (Corren & Lucas, 2004).
- It was understandable why psychiatrists and families concern that the program is against medication – Psychiatrists are trained in medical model and thus a non-medical program challenges their training. As for families, many want to protect their loved ones hearing voices as much as possible. They fear that after attending the program, their loved ones will refuse to take medication. They fear the consequences of not taking medication e.g., the condition of their loved ones turns very bad.
- Some psychiatrists also argued that the program has limited research evidence showing that it is effective.
- This argument depends on what we counted as evidence. If we only consider evidence from randomized control trials (RCTs) as evidence, this argument is right because there are limited RCTs for the program. However, if we consider evidence from other research methods (e.g., survey, pre and post test, or even qualitative research methods such as interview, focus group and ethnography), there are a lot of evidence suggesting its benefits. Due to the narrative nature of peer led support program (e.g., talking, sharing of experience), RCTs may not be the best way to evaluate its effectiveness (Dillon & Hornstein, 2013). Research methods which are more qualitative and narrative may be a better option (Corstens et al., 2014).
- It is understandable why some psychiatrists may not consider evidence from research studies other than RCTs as evidence because they are trained in a medical model and the medical model usually values RCTs more than other types of studies.
- The following argument is from service users. The program emphasizes hope. This can be a pressure to some service users who cannot feel hope (Hart, 2017). They may feel uncomfortable being told by peers to be hopeful. Or they may feel hopeful when they are using services (e.g., support group) but feel hopeless again after the group.
Note: It is important to give all service users a reminder that every person hearing voice’s experience is unique, and we should give everyone space and not to impose hope on other people.
Corren, D., & Lucas, D. (2004). Hearing voices – and proud of it: Dan Corren and Dorte Lucas explain how a Hearing Voices group helped a client to come to terms with his experiences. Mental Health Practice, 7(7), 16–17. https://doi.org/10.7748/mhp2004.04.7.7.16.c1799
Corstens, D., Longden, E., McCarthy-Jones, S., Waddingham, R., & Thomas, N. (2014). Emerging perspectives from the hearing voices movement: Implications for research and practice. Schizophrenia Bulletin, 40 Suppl 4(Suppl_4), S285–S294. https://doi.org/10.1093/schbul/sbu007
Dillon, J., & Hornstein, G. A. (2013). Hearing voices peer support groups: A powerful alternative for people in distress. Psychosis: Voices in a Positive Light, 5(3), 286–295. https://doi.org/10.1080/17522439.2013.843020
Dillon, J., & Longden, E. (2011). Hearing voices groups: Creating safe spaces to share taboo experiences. In M. Romme & S. Escher (Eds.), Psychosis as a personal crisis: An evidence-based approach (Vol. 1–Book, Section, pp. 141–151). Routledge. https://doi.org/10.4324/9780203696682-21
Hart, A. (2017). When we lose hope: Experiences from Hearing Voices groups. Psychosis, 9(3), 286–289. https://doi.org/10.1080/17522439.2017.1363475
Inman, S. (2016). What you’re not hearing about the hearing voices movement. https://www.huffingtonpost.ca/susan-inman/-hearing-voices-movement_b_8044180.html
Intervoice. (2020). Intervoice. https://www.intervoiceonline.org/
Longden, E. (2013). The voice in my head. https://www.ted.com/talks/eleanor_longden_the_voices_in_my_head
Longden, E., Longden, E., Read, J., Read, J., Dillon, J., & Dillon, J. (2018). Assessing the Impact and Effectiveness of Hearing Voices Network Self-Help Groups. Community Mental Health Journal, 54(2), 184–188. https://doi.org/10.1007/s10597-017-0148-1
Oakland, L., & Berry, K. (2015). “Lifting the veil”: A qualitative analysis of experiences in Hearing Voices Network groups. Psychosis, 7(2), 119–129. https://doi.org/10.1080/17522439.2014.937451
Payne, T., Payne, T., Allen, J., & Lavender, T. (2017). Hearing Voices Network groups: Experiences of eight voice hearers and the connection to group processes and recovery. Psychosis, 9(3), 205–215. https://doi.org/10.1080/17522439.2017.1300183
Pies, R. P. (2014). Trivializing the suffering of psychosis. https://www.psychiatrictimes.com/couch-crisis/trivializing-suffering-psychosis
Ruddle, A., Livingstone, S., Huddy, V., Johns, L., Stahl, D., & Wykes, T. (2014). A case series exploring possible predictors and mechanisms of change in hearing voices groups. Psychology and Psychotherapy: Theory, Research and Practice, 87(1), 60–79. https://doi.org/10.1111/j.2044-8341.2012.02074.x
Sapey, B., & Bullimore, P. (2013). Listening to voice hearers. Journal of Social Work, 13(6), 616–632. https://doi.org/10.1177/1468017312475278