A systematic review of the terms used to refer to people who use mental health services: User perspectives

Abstract

Objective: The terms used to refer to people who receive mental healthcare have been described as either potentially stigmatizing or empowering. This paper systematically reviews empirical studies of terminological usage in order to ascertain current knowledge.

Methods: Multiple databases were searched using the terms ‘patient’, ‘client’, ‘service user’ and ‘consumer’. Empirical, English language studies were included where an aim was to measure outcome related to the various terms used to describe or refer to people who use mental health services. Studies were assessed (i) against a hierarchy of evidence and (ii) using a 12-item checklist of methodological quality.

Results: The search resulted in the screening of 13,765 abstracts; full text versions of 69 papers were examined and 11 studies that met the inclusion criteria were identified. All were cross-sectional surveys and all measured participant preference. Nine studies satisfied four or fewer quality markers. ‘Client’ and ‘patient’ were the terms preferred by study participants.

Conclusions: Despite a stream of debate in editorial columns and letters pages, it is unclear whether terminological use is important to the people who use mental health services. Preference is the sole outcome investigated empirically. Methodological rigour of extant study findings is largely questionable. Generalization and interpretation from included studies should be approached very cautiously.

Keywords

empowerment preference stigmatization

Introduction

A variety of terms are used by health professionals and their regulatory bodies, health service user groups, mental health charities and government departments to refer to people who use mental health services. In the UK the collective nouns or phrases used include ‘clients’, ‘patients’, ‘service users’, ‘patients/clients’, ‘clients/patients’, ‘people affected by mental illness’ and ‘user/survivor’ (Simmons et al., 2010). In the US and elsewhere, additional terms used have included ‘consumer’ (Stocks, 1997), ‘customer’ (Kensinger, 2000) and ‘survivor’ (Rada, 1996). Ironically, studies to ascertain which term is preferred have themselves added to the lexicon ‘recipients’ (Lloyd et al., 2001; Sharma et al., 2000; Simmons et al., 2010) and ‘attendees’ (Keaney et al., 2004).

The tendency to label people in terms of particular characteristics in order to distinguish groups may be an innate human quality. Many readily identifiable characteristics, for example shoe size, appear to be largely socially irrelevant but a selected group of qualities including skin colour, sexual orientation, social class and mental illness appear to carry disproportionate weight in terms of their contribution to social perception (Rusch et al., 2005). Labelling inherently involves oversimplification in order that particular individual characteristics can be allocated into pre-existing conceptual categories. These categories may not necessarily be value laden per se. However, stigmatization occurs when particular groups become associated with negative qualities through public ignorance, prejudice and discrimination. The stigma of being labelled as mentally ill has been identified as having disabling real-life consequences in the form of social exclusion (Thornicroft et al., 2008). Some commentators from both ‘user’ and ‘provider’ perspectives, have argued that the terms employed to describe people who use mental health services can of themselves be stigmatizing or empowering, with the far-reaching consequences that that implies (Andreasen, 1995; Link and Phelan, 2001; McLaughlin, 2009). The corollary is that providers of mental health services have the power to stigmatize the users of those services.

The diversity and strength of opinion that is expressed about the terms employed to describe people who use mental health services suggests that this is not a settled discourse. Objections to specific terms, and indeed arguments in favour of others, have been raised on etymological grounds (Andreasen, 1995; Neuberger and Tallis, 1999) and on the power relations that they imply (Barker et al., 2008; Beaume, 2002; Calloway et al., 2001; Elliott, 1993; Stocks, 1997). This diversity of opinion is reflected in the variety of different terms used in official government literature. This appears to be an international phenomenon: New Horizons (Department of Health, 2009), the UK government’s 10-year plan for mental health services, refers variously to ‘service user’ (23 occasions), ‘patient’ (12 occasions) and ‘client’ (5 occasions). Australia’s Fourth National Mental Health Plan (Commonwealth of Australia, 2009) uses ‘consumer/s’ (94 times); the other terms used, all on fewer than five occasions, are ‘patients’, ‘clients’ and ‘recipients’. Canada’s framework for a mental health strategy (Mental Health Commission of Canada, 2009) uses no single term exclusively (‘patient/s’ four uses; ‘client/s’ and ‘consumer/s’ three uses each, ‘survivor’ and ‘user’ one each). In Ireland’s proposal for a national framework (Government of Ireland, 2006) ‘service user/s’ or ‘user/s’ are preferred (951 uses) in comparison to ‘patient/s’ (287 uses). In the US, the Surgeon General’s report on mental health (National Mental Health Information Centre, 1999) uses ‘patient/s’ (668 times), ‘consumer/s’ (289 times) and ‘client/s’ (104 times).

Although the authors of the present study were aware of a number of investigations of term preference, they did not know if any other outcomes such as stigmatization or empowerment had been examined. Therefore it was decided to conduct a systematic review to identify, describe and synthesize current knowledge from empirical studies about any outcomes related to the terms that are applied to people who use mental health services. It was not the intention to determine a consensus term, but rather more simply to ascertain the state of knowledge about terminological use.

Method

Search strategy and inclusion criteria

A systematic search strategy was used to identify English language empirical studies about the terms used in any media to refer to people who use mental health services (Appendix). Titles and abstracts were reviewed for relevance. The full text version of any paper was obtained where the title and abstract indicated an empirical study about terminology with any outcome measured. Full text retrievals were read and selected for inclusion in the review if they contained original data relating to the use of various terms to refer to people who use mental health services. References lists in identified papers were hand-searched. Where studies met inclusion criteria, a further search was made of internet sources in order to locate any supplementary data or information related to the study.

Study quality assessment

Study quality was appraised in two stages. Overall design was assessed with reference to a ‘hierarchy of evidence’ (Greenhalgh, 2006) moving downwards from high-quality systematic review evidence of randomized controlled trials, through experimental designs of increasing bias, to non-experimental case control and cohort studies, cross-sectional surveys and case reports. Stage two used a 12-item tool designed for the study and informed by several sources, in particular the University of York Centre for Reviews and Dissemination guidance (2008) and Greenhalgh (2006). The checklist comprised items frequently included in descriptions of critical appraisal of survey studies and included study aims, sampling issues, tool development and properties, generalizibility of results, funding and researcher independence. In both stages, both authors independently rated studies and where there was disagreement consensus was reached through subsequent discussion.

Results

The search strategy identified 13,765 titles. These were screened for relevance as outlined above; 69 were obtained in full text and examined in detail. Eleven empirical studies were found that met inclusion criteria (Table 1). All reported on preference as the sole outcome. One further study (Naseem et al., 2001) examined the preference of a range of health professionals but not those of people who use mental health services and was thus excluded.

Table 1.

Studies of preferred terms used to describe people who use mental health services

Study	Sample	Question	Results (Preference to nearest %*)	Other findings
Upton et al. (1994)UK	N = 75 inpatients on one day. ≥18 years, those with dementia excluded	‘When you see a psychiatrist, do you think of yourself as a service user, client, customer, patient or consumer?’ The question was then repeated substituting the word psychiatrist with psychiatric nurse and with general practitioner	‘Patient’ By psychiatrist 83% By psychiatric nurse 77% By GP 85% ‘Client’ By psychiatrist 7% By psychiatric nurse 13% GP 5% ‘Service user’ By psychiatrist 5% By psychiatric nurse 4% By GP 4%	People who preferred the term ‘client’ were overwhelmingly women; all over 61 years preferred ‘patient’
Cybulska (1994) UK	N = 36 people aged ≥65 attending day hospital or visited by community psychiatric nurse	Not described	‘Patient’ 89% ‘Client’ 6% ‘Service user’ 3% Other 2%	Carers attending an Alzheimer’s disease support group also expressed a preference for the term ‘patient’
Mueser et al. (1996) US	N = 302 persons participating in a variety of inpatient and outpatient psychiatric programmes in five states. No exclusion criteria	‘We are conducting a survey of people who have had experiences receiving mental health treatment. We are interested in knowing what you would like to be called (other than your name) as a recipient of mental health services.’ Subjects were then asked to identify the terms they preferred: ‘client’, ‘consumer’, ‘patient’, ‘doesn’t matter’, ‘other’	‘Client’ 45% ‘Patient’ 20% ‘Consumer’ 8% Other / No preference 27%	No significant association between preferred term and gender, diagnosis, inpatient/outpatient status or history of psychiatric hospitalization
Ritchie et al. (2000) UK	N = 147 adult attendees of the psychiatric outpatient clinic over a two-week period	Data were gathered from a self-administered questionnaire, which determined subject preferences to three choices of term (‘patient’, ‘client’ or ‘other’), and their attitudes (to ‘patient’ and ‘client’) using a five-point Likert scale	‘Patient’ 77% ‘Client’ 23% No preference 4% Dislike or strongly dislike ‘client’ 47% Dislike or strongly dislike ‘patient’ 14%	Men and those over 40 years preferred ‘patient’ more compared with younger people and women. Diagnosis of depression, white ethnicity and never being an inpatient were associated with greater antipathy towards ‘client’, though ‘client’ was generally unpopular
Sharma et al. (2000) Canada	N = 427 mental health service recipients in four hospitals. Exclusions: developmental disability	Both groups were asked their preference for one of four terms: ‘client’, ‘patient’, ‘consumer’ and ‘survivor’. An ‘other’ option was also provided	‘Patient’ 55% ‘Client’ 29% ‘Survivor’ 7% ‘Consumer’ 3%	Service recipients at rural sites less likely to prefer ‘patient’. Retired service users preferred ‘patient’
Swift et al. (2000) Ireland	N = 145 people from four psychiatric outpatient clinics. Exclusions: significant cognitive impairment, first-time attendees	Participants were asked to choose between being referred to as a ‘patient’, a ‘client’ or a ‘service user’	‘Patient’ 70% Other terms not reported	50% of participants wished to be called by their first name by their doctor but 50% had no preference
Lloyd et al. (2001) Australia	N = 125 respondents participating in inpatient or outpatient programmes. No exclusions	The survey asked people to place a tick beside the term that they preferred: ‘consumer’, ‘patient’, ‘client’ or ‘other’	‘Client’ 34% ‘Consumer’ 28% ‘Patient’ 23% Other 15%	Treatment setting was the most important factor. Current inpatients preferred ‘patient’ (9% consumer, 15% client’). Client was more popular among younger respondents. Age and gender had little influence
McGuire-Snieckus et al. (2003) UK	N = 133 people with severe mental illness and outpatients of a community mental health team	‘I would rather be addressed by a GP/psychiatrist/CPN/psychologist/OT/SW as a: (a) patient (b) client (c) service user (d) no preference’	‘Patient’ By a psychiatrist 67% By a community psychiatric nurse 47% ‘Client’ By a psychiatrist 23%By a community psychiatric nurse 43% ‘Service user’ By a psychiatrist 9% By a CPN 8%	Significant proportion of those aged ≥41 years preferred patient compared to <41; those <40 liked client compared to the older group
Keaney et al. (2004) UK	N = 150 comprising 121 inpatient and outpatients in a National Health Service substance misuse service and 29 private patients in a small methadone maintenance clinic. Drug patients 67% of sample, alcohol 20%, tobacco smokers 13%	The subjects’ preferences to four choices of term (‘patient’, ‘client’, ‘service user’ or ‘other’) were determined, alongside exploration of their attitudes (to ‘patient’, ‘client’ and ‘service user’) using a five-point Likert scale	‘Patient’ 54% ‘Client‘ 41% ‘Service user’ 5%	Similar result irrespective of problem – drug, alcohol, smoker – although more alcohol misusers preferred patient (66%) than did drug users (52%) and tobacco smokers (47%)
Covell et al. (2007) US	N = 1,827 individuals ≥18 years with diagnosis of severe mental illness recruited as part of a separate eight-site study	‘Different people use different words to refer to people who have received mental health services; words like consumer, client, patient, ex-patient, survivor or some other description. What do you prefer to be called?Client/ Patient/ /Ex-patient/ Survivor/ Other (specify)’	‘Client’ 39% ‘Patient’ 22% ‘Consumer’ 16% ‘Survivor’ 11% ‘Other’ 11% ‘Ex-patient’ 1%	Preference varied by site, but not by gender, race or diagnosis
Simmons et al. (2010) UK	N = 336 recipients of mental health services including general adult, post-natal and old age psychiatry. Those with dementia excluded	‘1. Would you like a [name of discipline specified] to regard you as a service user, patient, client, survivor or user? (Responses indicated by ticking one of the three boxes for each term: yes/no/unsure)2. Please rank your order of preference for the term by which you would prefer a [name of discipline specified] to regard you as (1 to 5).’	1. Those answering yes:‘Patient’ 72.6% ‘Client‘ 43.1% ‘Service user’ 22.6% ‘Survivor’ 14.6% ‘User‘ 13.4% 2. Mean (SD) preference score (lower score = most preferred) ‘Patient’ 1.76 (1.15) ‘Client’ 2.22 (1.09) ‘Service user’ 3.06 (0.99) ‘User’ 3.96 (0.97) ‘Survivor’ 4.00 (1.23)	Patient clearly most favoured for psychiatrists and nurses; slightly favoured over client for social workers/occupational therapist

Unless otherwise stated

The number of participants ranged from 36 to 1,827 (median = 147). The total number of participants was 3,558, with more than half (1,827, 51.3%) enrolled in a single study (Covell et al., 2007). Four studies drew their sample from both inpatient and outpatient services, four from outpatients/day hospital or community services, two from inpatient-only services, and one from consumer-operated services (including drop-in centres, educational services and peer support) where users had a severe and persistent mental illness (Covell et al., 2007). Participants were usually working age adults from general psychiatric services, usually with serious and enduring mental illness. Exceptions were two studies that included people over 65 years (Cybulska, 1994; Upton et al., 1994), while one study (Keaney et al., 2004) drew its sample from a substance misuse service. It was established in this latter survey that most respondents were comfortable being categorized as having a mental health problem.

Study quality

All 11 studies were judged to be cross-sectional surveys (level six evidence). In stage two of quality assessment, only one study (Covell et al., 2007) was judged to meet more than half of the quality criteria (score 1–10 from a possible 12, median = 4). No study justified its sample size a priori. Response rates were not reported in six studies; in the remainder these were reported as 27.7% (McGuire-Snieckus et al., 2003), 88% (Upton et al., 1994), 91.3% (Simmons et al., 2010), 96.7% (Mueser et al., 1996), and 99.6% (Covell et al., 2007). The primary aim of the study was clearly stated in 10 studies.

No study reported information about the reliability or validity of the data collection instrument used, and just one (Covell et al., 2007) reported on questionnaire development including feasibility, acceptability and piloting (Campbell, 2004). Respondents were requested to select their preferred choice of term from a finite list in nine of 11 studies. ‘Client’ and ‘patient’ were included as response options in all of these nine studies. Other terms offered were ‘consumer’ (five), ‘other’ (five), ‘service user’ (five), ‘survivor’ (five), ‘no preference’ or ‘doesn’t matter’ (two each), ‘ex-patient’, ‘user’ and ‘customer’ (one each). In one study (Simmons et al., 2010) respondents were requested to rank order preference for a number of terms rather than select only one, to indicate acceptability for each item on a five-point Likert scale, and to state whether each noun was acceptable per se. In Cybulska (1994), neither the nature of the question put to respondents nor the finite list of options were made explicit. Three studies (McGuire-Snieckus et al., 2003; Simmons et al., 2010; Upton et al., 1994) iterated and/or varied the question used in order to examine whether response differed according to the professional they were either hypothetically or in reality consulting with. Information was presented either in a self-administered questionnaire, usually anonymously (six studies) or in an interview (three studies). Two studies (Cybulska, 1994; Lloyd et al., 2001) did not state the method by which information was elicited.

Analysis

Methodological issues including sampling, instrumentation content and quality, and outcome measures meant that a statistical synthesis of survey data as that described by Rao et al. (2008) was not possible; therefore a narrative synthesis of the data was conducted.

Eight studies reported that the majority or consensus preferred term was ‘patient’, while ‘client’ was selected in three studies. ‘Client’ was the preferred term in both US studies (including the methodologically strongest study) (Covell et al., 2007; Mueser et al., 1996), and in the sole Australian study (Lloyd et al., 2001). ‘Patient’ was the preferred term in all six UK studies, and the Canadian and Irish studies. Where strength of preference was measured, ‘patient’ was rated as moderately liked, ahead of ‘client’ (Simmons et al., 2010), while ‘client’ was disliked or strongly disliked by 47% of participants (Ritchie et al., 2000). Few conclusions could be drawn about changes in preference over time due to the small number of studies, incomparability between samples and variation in questions asked. However, preference for the term ‘patient’ in the UK studies were, chronologically, 83% (Upton et al., 1994), 77% (Ritchie et al., 2000), 67% (McGuire-Snieckus et al., 2003) and 54% (Keaney et al., 2004). A fifth UK study (Simmons et al., 2010) did not ask the question in a comparable manner.

Findings about the influence of gender, diagnosis, inpatient or outpatient status, and previous history of hospitalization on preference were contradictory. Covell et al. (2007) found little evidence to support any difference on these variables, while methodologically weaker studies reported that men preferred the term ‘patient’ (Ritchie et al., 2000) and women preferred ‘client’ (Upton et al., 1994). Only one study (Ritchie et al., 2000) reported an effect of diagnosis, finding that depression was associated with greatest antipathy towards ‘client’. Inpatient status, ethnicity and history of hospitalization were all reported to be factors influencing preference in one study, and not to be important factors by one study each. A number of studies reported that study site was important. Sharma et al. (2000) found that rural respondents were less likely to prefer ‘patient’, while site (Covell et al., 2007) and treatment setting (Lloyd et al., 2001) were important factors in two others. Age was influential in four studies: older people preferred ‘patient’ (McGuire-Snieckus et al., 2003; Ritchie et al., 2000; Sharma et al., 2000; Upton et al., 1994). Two studies indicated that the profession of the individual using each term exerted an influence on preference, with ‘patient’ overwhelmingly preferred when interacting with a psychiatrist (Simmons et al., 2010; Upton et al., 1994), while ‘client’ was more acceptable, though still not most preferred, when interacting with a social worker or occupational therapist (Simmons et al., 2010).

Study recommendations

A significant minority of studies (5/11) made explicit recommendations about terminology from their findings either in terms of what terms services should use (‘Mental health services should refer to “patient” rather than “service user”’ (Simmons et al., 2010)) or in terms of retaining the status quo (‘We should be wary of abandoning a term favoured by those to whom it refers’ (Upton et al., 1994)). A further 4/11 studies were more measured in their recommendations, indicating that practitioners and users should continue to review terminological preference (Mueser et al., 1996; Sharma et al., 2000). One study suggested that different terms could be used based on characteristics associated with terminological preference (McGuire-Snieckus et al., 2003). One study (Swift et al., 2000) did not make recommendations.

Discussion

Commentators have suggested that the terminology that is employed to refer to people who use mental health services has the potential to stigmatize or empower them. This study examined the international literature to ascertain the current state of knowledge and found little empirical evidence to confirm or refute this hypothesis. The sole outcome measured in relation to terminological use in the extant literature is personal preference. It was not an aim of this study to determine a consensus opinion as to the ‘correct’ term that should be employed to refer to people who use mental health services, nor to suggest that there can be no variation at local or national level. However, given the narrow focus on preference as an outcome, a discussion of the study findings must inevitably focus on it to a degree.

All of the studies included in this review employed cross-sectional survey designs, appropriate for eliciting information about preference, but were executed with little methodological rigour. Problems were identified with questionnaire development and content. With the exception of one study (Covell et al., 2007), there was little evidence that questions were piloted for feasibility, acceptability, degree of relevance, reliability or validity. Most of the studies were conducted by small clinical teams in what appeared to be the immediately available clinical populations, with few attempts to address response bias. This indicates that caution must be exercised in interpreting the results from these surveys and in translating the results into recommendations for practice.

What does appear clear from the available literature is that the terms ‘patient’ or ‘client’ are selected most often as the terms preferred by survey respondents. The divide in preference between these two terms appears to be broadly speaking along national grounds, between UK and US studies respectively. It can be speculated that this reflects differences in culture, tradition and attitudes to healthcare. Fewer studies enquired about preference of the newer term ‘service user’ and it will be interesting to see whether it becomes more preferred in the future, given its current use in official literature. There was some evidence that – in the UK at least – preference for the term ‘patient’ may be lessening over time, although varying samples and methodologies preclude firm conclusions on this point.

Age is reported to be associated with term preference in some studies, with older respondents preferring ‘patient’. However, it is not known if this indicates increasing conservatism as individuals age, or if it is representative of a deeper shift in social attitudes over the past 40 years, or if it is due to some other factor. Respondent characteristics such as ethnicity, gender and diagnosis appear to have little influence on preference, or reflect a lack of power in the studies. The main factor influencing term preference in the higher-quality studies appear to be related to site, fitting with the geographical/cultural variation present across all studies. It is worth highlighting that respondent choice appears to vary according to the health professional they are actually or potentially interacting with, thus ‘patient’ was most strongly preferred when used by a psychiatrist (McGuire-Snieckus et al., 2003, Upton et al., 1994).

This review has been unable to identify whether or to what extent terminological preference is important to the people who use mental health services themselves, or indeed whether the use of any terminology is related to any outcomes other than preference, for example empowerment or stigmatization. The number of opinion articles and letters on this subject suggest that it is important to people from both user and provider perspectives, while the diversity of opinion underlines the lack of agreement. Reliable and valid measures of stigmatization are available (King et al., 2007; Link et al., 2004) so it is curious that no one has tried to test the putative link between terminology and stigma. The quantitative nature of the available empirical studies means that it is difficult to understand why particular terms are preferred, though more exploratory designs could address this.

It is difficult to say whether terminology is important to the people who use mental health services and whether it is either stigmatizing or empowering. Given that studies about preference periodically appear in psychiatric and other medical fora (Baskett, 2002; Byrne et al., 2000; Deber et al., 2005; Denning et al., 2002; Wittich et al., 2003), it is clear that there is an ongoing debate, possibly reflecting the uncertainties of practitioners and researchers.

Conclusion

The aim of this study was not to suggest a consensus term based on this review, but rather to bring some clarity as to the current state of knowledge. What is apparent is that the assertion that particular terms can be stigmatizing remains empirically untested. Should this be established, then there is scope for more methodological rigour in future studies. In the current literature there has been a lack of user input into the design and planning of appropriate questions that might address some of the uncertainties and inconsistencies in the literature thus far. Questions should be piloted, their reliability and validity established, and the representativeness of the study samples ensured.

Individual preference should be respected in professional interactions (Covell et al., 2007; Naseem et al., 2001), however this is impracticable in literature and media intended for larger audiences. At present it seems that the preferred terms of those who use mental health services to describe themselves are, dependent on geography, either ‘patient’ or ‘client’.

Footnotes

Appendix

Databases searched (April, 2010):

The search used both subject and text-words including the following terms:

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