What to expect
The Hearing Voices support groups listed on the BC Hearing Voices Network website are hosted by different organizations around BC (for instance, healthcare and community support organizations). Because of this, each group is run slightly differently. However, you can expect some basic principles to apply:
- Hearing Voices support groups are not treatment groups. Hearing voices support groups are intended as safe, supportive spaces where people who hear voices can speak openly about their experiences without fear of judgment, exchange strategies and ideas, and build community.
- Hearing Voices support groups are peer-led. Hearing Voices support groups are facilitated by people who hear voices, see visions, or have other unusual sensory experiences. They are intended to be democratic and non-hierarchical: that is, no one is there to tell other group members the “right” way to respond to or think about their experiences. Every member is an expert in their own experiences.
- Hearing Voices support groups are confidential. The group facilitators do not record what is said during sessions, and group members are asked to keep information discussed during sessions confidential. Any limits to confidentiality (for example, duty to report if someone is in immediate danger) will be gone over at the start of every session.
- Hearing Voices support groups are voluntary. You are always free to stop (or start) attending the group at any time. Participation is voluntary, and how much you would like to share in the group is up to you. If you would prefer to just listen, that’s okay!
- Hearing Voices support groups sanction the right to interpret your own experiences in any way. Some group members identify with a psychiatric diagnosis; others do not. All people who hear voices, see visions, or have other unusual sensory experiences are welcome at Hearing Voices support groups, regardless of which words they use to describe themselves or how they make sense of their experiences.
Benefits and challenges
The following summary of the benefits and challenges of Hearing Voices support groups was provided by Karen Wong, a UBC masters of social work student:
- Welcomed by people who hear voices and some professionals
The program is an approach welcomed by people who hear voices (Longden, 2013). (The benefits to the people who hear 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 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 normalizes their experience. They share experiences of hearing voices, feelings and emotions, and ways of coping (Dillon & Longden, 2011; Payne et al., 2017). They support each other. They thus feel less isolated. They also find less fear, anxiety and distress from 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 a 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 with children who hear voices) (Intervoice, 2020). This thus reduces the feeling of stigma to service users and their families. Some service users will even discuss the social stigma against their voice hearing 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 of hearing 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 voices (i.e., recovery in hearing 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 who hears voices. They educate people who do not hear voices (e.g., mental health service providers) to understand what it is like to hear voices and thus reduce the stigma from the society against people who hear 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 groups
Some psychiatrists and families consider the program anti-psychiatry and against medication:
- They are 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 worsens.
- 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 controlled 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 is a lot of evidence suggesting its benefits. Due to the narrative nature of peer support (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 remind all service users that every person hearing voice’s experience is unique, and we should give everyone space and not 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