Voice Collective Evaluation
Research Project Team
- Daniel Hayes,
- Dr Jessica Deighton,
- Dr Miranda Wolpert
Mind in Camden
‘Hearing voices’ is a term commonly used to describe unusual sensory perceptions or hallucinations, such as seeing visions or hearing voices, in the absence of identifiable stimuli. Whilst voice hearing was once thought to be an indicator of severe mental illness, most notably psychotic disorders (Bettes & Walker, 1987; Green et al, 1992; Galdos & Murray 1993; Galdos & van Os, 1995) epidemiological evidence suggests that these experiences are relatively common in childhood and adolescence, with prevalence rates between 5.7 and 21% (Bartels-Velthuis et al, 2010; Dhossche et al, 2002; McGee et al; 2000; van Os et al, 2009; Yoshizumi et al, 2004).
Traditionally, action taken by professionals in response to voice hearing would be to pathologise such experiences, prescribe antipsychotic medication, and see such individuals as ‘patients’ or ‘sufferers’ (BPS, 2000; Leudar, 2000). However, one alternative approach, , pioneered by Romme and Escher, is to treat the experience as unusual rather than abnormal; meaningful, rather than just symptoms to be eliminated or dulled by medication; and a part of human experience that is a response to trauma, rather than as a specific ‘illness’.
Research published by Escher et al. (2002) suggests that there is considerable scope for improving the experience of young voice-hearers. By building on the work already undertaken on voice hearing with adults in Holland by Professor Marius Romme, Escher et al. (2002) carried out research with 80 children and young people who heard voices, aged between 8 -18 years. When these young people were encouraged to discuss their experiences of voice hearing in an open and supportive environment, to make sense of their voices and their voices relationship to their life experiences, research showed that they were less likely to experience long term problems.
In light of above, Voice Collective has been set up to support young people, their families and professionals around the experience of voice hearing. The aim of the research was to evaluate the work of Voice Collective.
- Whether Voice Collective has increased young people and their families self-esteem and coping strategies, and if so, through what mechanisms
- Whether professionals’ access to Voice Collective services, lead to improvements in access and quality of services provided, and if so, through what mechanisms
- Whether Voice Collective improved the quality and quantity of online information and for children and young people who hear voices, their families and carers
A mixed methods approach was used drawing on questionnaire, interview and website content data. This was analysed in the following ways:
- Questionnaire feedback was collated and descriptive analysis undertaken.
- Interview data was examined using thematic analysis to identify individual's perspective and experiences, and to the impact on the individual of support from Voice Collective.
- A change in online resources was examined using a pragmatic content analysis
Young people indicated that they found individual and peer support useful. Thematic analysis from interviews and feedback from questionnaires suggested that young people perceived the Voice Collective as an organisation that: taught them new coping strategies, listened to them, reduced their feelings of isolation, and approached voice hearing in a normalising, non-stigmatising way. This resulted in them feeling empowered by not seeing themselves as mentally ill, as well as being able to cope with voices better in their daily lives. Barriers and improvements suggested by young people were to have peer support groups with narrower age ranges.
Parents indicated they found Voice Collective support useful. Thematic analysis from interviews and feedback from the questionnaire suggested that parents perceived the Voice Collective as an organisation that: reduced their feelings of isolation, listened to them, approached voice hearing in a normalising and non-stigmatising way where they could share and gain knowledge about voice hearing, and that could be a safety net in times of need. This resulted in them feeling empowered to support their young person that heard voices. Barriers and improvements suggested by parents were to have peer support groups in more locations outside London.
Professionals and facilitators perceptions and feedback from workshops were that they contributed to their understanding of the experience of voice hearing, as well as how to work with young people who hear voices. This enabled them to feel more confident in working with young people who hear voices, feel more compassion and empathy for young people that hear voices, and being able to better normalise the experience of voice hearing.
Voice Collective has influenced the quality and quantity of some web-based literature. However, with some other websites such change cannot be directly attributable to Voice Collective, but may be due a wider shift in the hearing voices movement.