These guidelines arose from a conference organised by Vicky Macdougall, Keith Coupland and members of the Gloucestershire Hearing Voices groups, at Belsize House, Gloucester (March 2000). The theme was mainly about helping voice hearers in groups. However, it was felt that many of the principles were transferable to all groupwork for psychosis especially after hearing the contribution by the group from Coleford (Caley and Miller 2000).
Voice hearing is often seen as a symptom of psychosis. However there is a significant proportion of the voice hearing populations that have never been psychiatric patients (Romme & Escher, 2000). Hearing voices (auditory hallucinations) is considered a first rank symptom of schizophrenia and schizoaffective disorder (Schneider, 1959, American Psychiatric Association, 1994). There are three main diagnostic categories of patients that hear voices; schizophrenia (around 50%); affective psychosis (around 25%) and dissociative disorders (around 80%) (Honig, Romme, Ensink, Escher, Pennings & Devries, 1998).
However, many people who hear voices find them helpful or benevolent (Romme and Escher, 1987). In a large study of 15,000 people it was found that there was a prevalence of 2.3% who had heard voices frequently and this contrasts with the 1% prevalence of schizophrenia (Tien, 1991). In a study by Honig and others, of the differences between non-patient and patients hearing voices was not in form but content. In other words the non-patients heard voices both inside and outside their head as did the patients but either the content was positive or the hearer had a positive view of the voice and felt in control of it. By contrast the patient group were more frightened of the voices and the voices were more critical and they felt less control over them (Honig et al, 1998). The experience of hearing critical voices is usually very anxiety provoking and leads to high levels of depression and suicidality (Fowler, Garety and Kuipers, 1995). Conventional approaches in psychiatry to the problem of voice hearing have been to ignore the meaning of the experience for the voice hearer and concentrate on removing the symptoms (audio hallucinations) by the use of physical means such as medication. There are some psychiatrists who still believe this is the only method of helping voice hearers (Halstrom, 1998). Although anti-psychotic medication is very helpful to most sufferers of severe mental illness there is a significant proportion (30 per cent) who still experience the ‘symptoms’ such as hearing voices despite very high doses (Curson, Barnes, Bamber and Weral, 1985). Traditional practice in behavioural psychology concentrated on either distracting the patient or ignoring references by the patient to the voice hearing experience, with the hope that the patient would concentrate on ‘real’ experiences, which would then be positively reinforced (the assumption being that the voice hearing was a delusional belief). The effect of this approach may well have been to discourage the discussion about the voice hearing experience but without eradicating it (Chadwick, Birchwood and Trower 1996). However brain imaging has since confirmed that voice hearers do experience a sound as if there were a real person talking to them (McGuire et al, 1993). Within the last ten years there has been considerable interest in the phenomenology, processes and coping mechanisms of people suffering from psychosis, using a broadly Cognitive Behavioural Therapy (CBT) approach (Haddock and Slade, 1996). Radical changes have also been taking place amongst psychiatrists, who are now paying closer attention to the meaning and content of the voices (Romme and Escher, 1987, 2000). Based on the work by Romme and Sandra Escher (his co-worker), voice hearers have themselves provided support for one another based on their own experiences (Coleman and Smith, 1998).
Although group work has been reported to be a therapeutic medium by voice hearers themselves (Baker, 1995) there has been little formal use of such groups by professionals treating psychosis. The reason for this may be that group work has been steeped in psychodynamic principles which suggested that people with psychosis were unable to benefit from participation in groups (Yalom, 1983). This perception is now changing and given the right conditions of a clear structure, clear boundaries, here and now focus on specific issues and an attempt to reduce anxiety at an early stage of the group work, then group work with psychotic patients can be successful in reducing symptoms as well as providing peer support (Yalom, 1983; Kanas, 1988; Bucherri et al, 1996 & 1997,Kanas, 1998, Wykes, 1999).
Philosophy and Theoretical Underpinning
Despite theoretical differences between psychodynamic approaches and CBT approaches (Chadwick, Birchwood, and Trower, 1996) there is now a great deal of positive overlap to the benefit of those suffering psychosis (Schermer and Pines, 1999). Of late there has been renewed interest in using attachment theory as an approach to healing the early trauma of many sufferers (Allen, 2001) as well as new developments in such fields as drama therapy (Caley and Miller, 2000, Casson, 2001). Some psychiatrists are interested in moving from a strictly biological model of voice hearing and schizophrenia to a psychological approach (Leudar and Thomas, 2000). Others are interested in combining models into the biopsychosocial approach with psychiatrists trained and working with talking therapies as well as medication (Gabbard and Kay, 2001) There are useful ideas in the self help approach of the HVN (Downs, 2001). Overall the groups have adopted the Integrative approach to groupwork for psychosis of Kanas (1996). This emphasises reduction in isolation by increasing social interaction, learning to overcome the distress of symptoms especially by sharing coping strategies and being user led as to the content of sessions so long as that is within the framework already negotiated. The group is seen as a coming together of individuals in a shared endeavour to help each other (a work group) rather than the group process bringing about change (analytic group).
Training of Facilitators
Ideally each facilitator should have undergone the local Integrated Approaches to Severe Mental Illness (IASMI) course or other “Thorn” courses . Skills in group work are essential. Both facilitators should have experience of working with groups preferably groups of people with severe mental illness. This criterion is meant to be about quality assurance of the facilitators rather than a restriction.
The Process of Setting up a Group
The setting up of a hearing voices group or other group for psychosis needs to be a decision taken by the whole team. It is important that the multi-disciplinary team, users and carers take part in the setting up of the group in order to ensure ownership, support and participation in the process. Once the decision is made to start the group then contact could be made with facilitators and members from other groups, who will then explain the process and resources available.
If women are present as group members then it is important that at least one facilitator is a woman (Macdougall 1998). Many people who experience voice hearing have suffered childhood trauma including bullying and sexual abuse (Allen, 2001). There may be a need for a separate women’s group.
Every month the facilitators meet as a group for supervision, usually for two hours. The style is informal and sharing successful interventions is encouraged. Risk issues and other more immediate needs can be addressed by calling the supervisor or other facilitators as well as normal risk management processes within the care programme approach.
The group members:
- Are distressed from hearing voices and other problems of psychosis
- Want to work as a member of a Hearing Voices Group
- Usually have a diagnosis of psychosis/severe mental illness such as schizophrenia, affective psychosis
- Usually have tried a variety of anti-psychotic medication with little effect on the hallucinations/voices
- May have a contact who will liaise with the group facilitators, such as a care co-ordinator or key worker.
- Where possible they will already be attending at the centre where the hearing voices group or other group for psychosis is to be held as this helps the person feel comfortable in the group. For some people it is very stressful to enter a busy day centre for the first time without knowing the people there. If they are not attending the day centre already then a careful process of engagement may be needed, depending on the person.
- Usually, the continued use of illegal substances such as amphetamines, heroin etc., or large quantities of alcohol excludes persons from making use of the group at this time.
Referrals can be accepted from members of the multi-disciplinary team who would normally be the key worker of the voice hearer or sufferer from psychosis. The importance of the rest of the team is recognised. Referrals should be in writing and include a brief psychiatric history. The voice hearer should see the referral letter or copy of full CPA and agree, before it is sent to the group facilitators. A voice hearer or sufferer from psychosis should be able to refer themselves to the group and the normal process reversed in order to ensure a keyworker and MDT support. Several members have prompted the referral of voice hearers they know need help. Most new referrals see the group video and make an informal visit to the group before committing themselves.
If the referral is accepted the voice hearer will be asked to attend an assessment. The first strategy is to normalise the voice hearing experience and put the voice hearer at their ease. The assessment is quite lengthy and makes use of the Manchester symptom scale (also called the KGV after the original authors, Krawiecka, Goldberg and Vaughan, 1977 modified by Lancashire, 1997 and described in Coupland, Davis and Gregory, 2001). The scale is very helpful in finding out how the voice hearers experience their psychotic symptoms as well as the anxiety and depression the symptoms may cause. (See also, Close and Garety, 1998). Not being able to complete a KGV does not necessarily preclude the sufferer from attending a group.
Other assessments include the Beliefs about Voices Questionnaire (BAVQ, Chadwick, Birchwood and Trower, 1994, a revised version is in appendix 3 in Romme and Escher, 2000), Social Functioning Scale (SFS), (Birchwood, Smith, Cochrane, Wetton and Copestake, 1990) and Quality of Life measures (Lancashire Quality Of Life, LQOL Oliver, 1996 and in a shortened version, the MANSA). A very comprehensive assessment (the Maastricht Interview) is included in the book by Romme and Escher, 2000.
After the assessment a letter is sent to the voice hearer, with a copy to the care co-ordinator, explaining the outcome of the assessment and whether the person has been accepted at this point to join a group. An important part of the letter is identifying and reflecting back the coping mechanisms that the person already has as well as a provisional formulation as to how the person is affected and a plan of how the groupwork will help. It is also hoped that the voice hearer will help make any corrections to the assessment letter so the spirit of sharing and co-operation is there right from the start. Assessments are repeated every three to six months.
Structure of the group
The group would normally have 6 to 8 participants and 2 facilitators. Initially, the group will meet weekly for 12 sessions followed by a break for two weeks for evaluation. After a further 12 sessions there is another evaluation period of 2 weeks. The group meets at a set time each week. The time of the sessions need to be agreed by the group along with the ground rules. Although there is evidence for of efficacy for short-term groupwork (e.g. Wykes, Parr & Landau, 1999) our own research suggests additional benefits of long term work. This makes the group a slow open style, with additional members joining the group in time and members leaving the group when they have jobs or move on for other reasons. Group members may need gentle encouragement over a long period to keep coming to the group.
The facilitators take an active role in running the group. They provide a high degree of structure for the early part of the group process (research and experience has shown that this is very important in order to reduce anxiety that people feel when they experience the group process, Kibel, 1981 and Kapur, 1986). This helps remove the feeling of being under pressure to contribute and self disclose, however the group members soon gain confidence to contribute. The first session should seek to establish the ground rules for running the group; the members of the HVG at Milsom St. produced the following:
Ground rules for groupwork
- All participants should have respect for the rules of the building i.e. where smoking
- There will be a break for tea, coffee, cigarettes after 45 minutes.
- Confidentiality: members and staff should not share information they hear in the group about members, with people outside of the group unless for risk management reasons or where permission is given for supervision or education.
- The group should start promptly each week at the agreed time.
- The group members expect each other to attend all the sessions.
- The focus of the group work is the origin, content, meaning, understanding and ways of coping with the voices. This process helps us to be aware of how to deal with the voices.
- We will not criticise each other’s contribution but we realise that what works for one person may not work for others.
- We aim to be supportive of each other in the group.
- Sharing is an important part of the group work.
- We will all be involved and take part in the group.
- Humour is an important part of the group, but laugh with us not at us.
- Facilitators are available for an agreed period of time after the group
The following few sessions should follow a format that gives an opportunity for each person to explore their voice hearing experience. This would normally begin by establishing when the voice started this week and looking at some of the possible stressors that may have occurred at the same time. This may be a very useful time to introduce the concept of stress vulnerability and how voice hearing commonly occurs during periods of very high stress, and is a more common experience than is realised. Having established what stresses made the voices start, the group could explore what the consequences were of hearing voices.
At this stage the group is not looking at the first episode of voice hearing but what is triggering the voices over the last week. The group can then explore what behaviour the group members’ use when the voice hearing starts and explore what coping mechanisms they are using to combat the negative effects of the voices. The sharing of this information seems to be very important partly because many of the voice hearers do not realise they have coping mechanisms and partly because it is useful to share other peoples’ coping mechanisms.
At this early stage the emphasis may well be on learning and the group can be supplied with several very useful pamphlets (Baker, 1995 and Downs, 2001) as well as on-line leaflets by David Kingdon and the Mental Health Foundation. As confidence grows in the group an exploration of the origin of the voices can be made. This part of the group process needs extreme sensitivity and facilitators need to be very careful about the pace at which this exploration is made as some members relive past trauma. Our groups have been very supportive and have helped this process to the great benefit of those concerned. During these early weeks it also may be useful to end the session with a relaxation exercise as a way of reducing anxiety although several members are keen to tell jokes and this seems to be as helpful! Fun and good humour seems to be as important as the depth of exploration of the voices. For some people this part of the group work is stressful and it seems that initially they are getting worse before they start to get better. As confidence grows people often start to make changes both in their ability to cope with the voices and in the general quality of their lives. The middle part of the group work is concerned with going over the antecedents, behaviours and consequences of voice hearing. More effective ways of coping with the voices are discovered and discussed within the group. Personal goal setting and plans for the future can be introduced at this stage. We have also set up separate self-harm groups to work with the common phenomena of self-harm in voice hearers, especially women.
As the group progresses, the beliefs about the voices can also be examined. This again requires great sensitivity as often very complex beliefs build up over years of experiencing voices because the person may not have been able to talk to anyone else about it. Some beliefs take the forms that conventional psychiatry would call delusional. These beliefs may have very protective functions for the voice hearer and should only be challenged if the overall benefit is a reduction in distress for the voice hearer or the prevention of harm. Direct challenging of any of these beliefs is often counter-productive. However, a gentle discussion about a belief by other group members often brings about changes much more quickly than a challenge from one of the group facilitators. It is important for the facilitators to “suspend disbelief” as many voice hearers have truly remarkable stories to tell. So-called delusional material can be explored in time (Kingdon and Turkington, 1991). (See also Davis and Coupland, 2000).
Bringing in outside speakers to the group is very helpful. The speaker could be a member of another hearing voices group. Several speakers are available to do this work and responses are usually very good as they are speaking from their own direct experience of the benefit of group work on their own lives. Other speakers that have proved useful are the clinical pharmacist and clinical psychologist. Some of the group members of the Gloucestershire Hearing Voices network are available to talk to new groups about their experiences of the recovering process, call Keith Coupland for contact numbers.
Each session of twelve weeks includes creative work such as affirmation cards, drawing, story telling and so on. This work is based on the ideas of self-esteem building and self-acceptance described by Dryden, (1998) and some of the CBT processes are incorporated into the groupwork. The last session of each twelve-week block is spent as a celebration with a meal in a pub!