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Assessing the Impact and Effectiveness of Hearing Voices Network Self-Help Groups

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Assessing the Impact and Effectiveness of Hearing Voices Network Self-Help Groups Community Ment Health J DOI 10.1007/s10597-017-0148-1 BRIEF REPORT Assessing the Impact and Effectiveness of Hearing Voices Network Self-Help Groups Eleanor Longden1,4 · John Read2 · Jacqui Dillon3 Received: 19 July 2016 / Accepted: 14 June 2017 © Springer Science+Business Media, LLC 2017 Abstract The Hearing Voices Network (HVN) is an Introduction influential service-user led organisation that promotes self- help as an important aspect of recovery. This study presents The English Hearing Voices Network (HVN) is a psychi- the first systematic assessment of the impact and effective- atric service-user/survivor led organisation that promotes ness of HVN self-help groups. A customized 45-item ques- the needs and perspectives of individuals who experience tionnaire, the Hearing Voices Groups Survey, was sent to voice hearing (auditory verbal hallucinations). Established 62 groups affiliated with the English HVN. 101 responses in Manchester in 1988, HVN developed from the work were received. Group attendance was credited with a of social psychiatrist Marius Romme and researcher San- range of positive emotional, social and clinical outcomes. dra Escher (Romme and Escher 1993, 2000; Romme et al. Aspects that were particularly valued included: opportuni- 2009) who, in partnership with both patient and non-patient ties to meet other voice hearers, provision of support that voice hearers, promoted an approach that emphasises was unavailable elsewhere, and the group being a safe and accepting and making sense of the experience, providing confidential place to discuss difficult issues. Participants frameworks for coping and recovery, and exploring the role perceived HVN groups to facilitate recovery processes and of psychosocial adversity in voice onset and maintenance. to be an important resource for helping them cope with Today there are similar networks in 31 countries, with the their experiences. Mental health professionals can use their English HVN deemed “the international gateway” for the expertise to support the successful running of these groups. global Hearing Voices Movement (James 2001, p. 47). In addition to its influence on research agendas, clinical prac- Keywords Group psychotherapy · Outpatient treatment · tice, and mental health advocacy (Corstens et al. 2014; Psychosocial interventions · Psychotic disorders · Social Longden et al. 2013; Woods 2013), a central part of HVN’s functioning · Vocational rehabilitation work is the provision of self-help groups, also known as ‘hearing voices groups,’ which endeavour to offer safe and accepting spaces to share one’s experiences, exchange cop- ing strategies, and develop a positive identity as someone who hears voices (Dillon and Hornstein 2013). In contrast * Eleanor Longden to more mainstream treatment approaches and therapy [email protected] groups HVN encourages a strongly user-led stance, in 1 Institute of Psychology, Health and Society, University which voice hearers are considered to be experts by expe- of Liverpool, Liverpool, UK rience, attendance is informal and not time-limited, and 2 School of Psychology, University of East London, London, in which all perspectives are respected as valid and there UK is no expectation to conform with any particular explana- 3 National Hearing Voices Network, Sheffield, UK tory framework (e.g., psychological, biomedical, spiritual, 4 Psychosis Research Unit, Greater Manchester Mental Health paranormal). Voice cessation is not considered the most NHS Foundation Trust, Harrop House, Bury New Road, important index of success, as opposed to understand- Prestwich, Manchester M25 3BL, UK ing and accepting the experience and developing more Vol.:(0123456789)1 3 Community Ment Health J constructive relationships with the voices one hears (Dillon Romme 2009). The HVGS was piloted with four repre- and Hornstein 2013; Dillon and Longden 2012). However, sentatives from national HVNs: two voice hearers from despite the global dissemination of the approach, there is the Danish and United States Networks, one psycholo- currently no systematic published evaluations of how mem- gist from the French Hearing Voices Network, and a psy- bers experience these groups beyond a series of important chiatrist from Intervoice (The International Network for but relatively small qualitative studies assessing the expe- Training, Education and Research into Hearing Voices). rience of group members (Dos Santos and Beavan 2015; Written feedback was used to gauge content and face Hendry 2011; Oakland and Berry 2015; Romme 2009) and validity; re-word items considered biased or leading; and facilitators (Jones et al. 2016). This is partly attributable to increase readability and accessibility. to the “uneasy relationship” (Corstens et al. 2014, p. 289) between mainstream medical/social science research agen- das and the HVN, in the sense that it identifies itself as a Procedure reformative social movement that privileges narrative and lived experience as a primary evidence source. Contact details for 62 groups were obtained from the As such, the aim of the current study is to provide the database of the English HVN. Only groups operating first quantitative survey of HVN self-help groups in order in the community (as opposed to inpatient, forensic, or to assess members’ perceptions of their impact and effec- secure psychiatric settings) were included. Group facilita- tiveness. Owing to the exploratory nature of the study, we tors were first contacted by email, and subsequently pro- had no pre-specified hypotheses. However, analyses were vided with paper copies of study information sheets, con- run to determine whether self-reported satisfaction with sent forms, and questionnaires to distribute to members. groups varied according to: gender, number of meetings To enhance response rates, pre-paid return envelopes attended, duration of membership, and whether group facil- were provided and all groups received a written reminder itators were voice hearers or mental health professionals. about the project 3 months after materials were first sent. Participants were also given the option to email their responses if preferred. Ethical approval was received Method from the Committee on Research Ethics at the University of Liverpool. Participants Participants were 101 adult members of HVN-affiliated Analysis community based self-help groups who reported hearing voices, were able to read and write English, and were will- All 28 items from the three subscales about the experience ing to give informed consent. or impact of the groups were summed to derive a total sat- isfaction score, with negative items reverse scored. Com- Materials parison between individual items and the scale’s neutral midpoint were assessed with one-sample t-tests. Differ- A self-report questionnaire, the Hearing Voices Groups ences in total score according to gender and group facili- Survey (HVGS), was designed specifically for the study tator were calculated using independent groups t-tests and and contained the following sections: demographic details the Kruskal–Wallis H-test (although the latter is a non- (six items); group format (six items); participant experi- parametric test, mean scores are still reported to enhance ences within the group (11 items); the impact of mem- comparability with other data). Pearson’s correlation coef- bership on life outside the group (12 items; seven social/ ficients were used to examine associations between total occupational, five clinical); and the effect of the group on score and number of meetings attended; and between expe- emotional wellbeing (five items). Items in the latter three riences within the groups and different social/occupational sections were scored on a five-point Likert scale (strongly (e.g., relationship with family, ability to work or study), agree—strongly disagree; much more often—much less emotional (e.g., feeling more hopeful, feeling happier) and often). All items had a ‘does not apply to me’ option. Five clinical (e.g., hospital admissions, incidence of self-injury) qualitative items were also included, responses to which outcomes. Because of the large number of planned com- will be reported elsewhere. parisons, alpha was set at a more stringent p ≤ .01 level to Questionnaire items were selected on the basis of reduce the likelihood of type 1 error. All analyses were existing literature about the benefits of attending HVN conducted using SPSS v.21 for Windows. To minimise data groups (Dillon and Hornstein 2013; Dos Santos and entry errors, 30 questionnaires were selected at random for Beavan 2015; Hendry 2011; Oakland and Berry 2015; checking; data entry agreement was 98.62%. 1 3 Community Ment Health J Results There was a weak positive association between total score and number of meetings attended, which was not sig- Completed questionnaires were received from 101 individ- nificant (r = .13, p = .323). Differences in total score were uals (53 males, 47 females, 1 transgender; mean age 44.54 then examined according to length of membership (as only years, SD 11.31). Eighty-three respondents (82.2%) identi- three individuals had attended for less than a month, this fied as White British and 90 (89.1%) had received a diagno- group was excluded from the analysis). There were no sis of psychotic disorder. significant differences in satisfaction amongst respond- ents who had been coming to a group for 1–6 months Impact (M = 96.71; SD 12.33), 6 months–1 year (M = 97.39; SD 12.49), 1–2 years (M = 91.63; SD 19.73), or more than 2 Across the sample the mean total satisfaction score was years (M = 99.65; SD 15.84; χ2(3) = 1.81, p = .613). 99.65 (SD 15.78; range 33–129; maximum possible score 140). Mean scores across the three questionnaire subscales Associations Between Group Experiences and Outcome were as follows: ‘Experiences within the group’ 44.43 (SD 7.28; range 8–55; maximum possible score 55); ‘Life out- To explore possible processes and mechanisms of change, side the group’ 31.53 (SD 9.07; range 8–56; maximum pos- scores for ‘experiences within the group’ (11 items) were sible score 60); and ‘How the group makes you feel’ 21.07 correlated with items for each remaining subscale: social/ (SD 3.18; range 7–25; maximum possible score 25).
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