Consumer? Views and preferences of people receiving public mental health care in Australia on the terms used to refer to them

Abstract

Objectives

To understand: a) whether adults receiving public mental health care were aware they were officially referred to as ‘consumers’ and, b) their views and preferences on the terms used to refer to them.

Methods

Single-page, anonymous survey conducted across two community mental health services in Northern New South Wales (NNSW). Ethics approval obtained from the local research office.

Results

108 people completed the survey with a response rate of approximately 22%. The vast majority (77%) of respondents were not aware that they were officially referred to as ‘consumers’. 32% of respondents disliked the term ‘consumer’ and 11% found it offensive. Half preferred the term ‘patient’, particularly when consulting a psychiatrist (55%). A small minority (5–7%) preferred the term ‘consumer’ for any care interaction.

Conclusion

Most respondents in this survey wished to be referred to as a ‘patient’ and a large proportion disliked being referred to as a ‘consumer’ or found it offensive. Further surveys should include broader sociodemographic and diagnostic/treatment variables. Official terms used to refer to people receiving public mental health care should be person-centred and evidence based.

Keywords

Consumer customer client patient service user

It was not long ago that imbecile, moron, idiot and lunatic were all accepted terms used to describe people with varying degrees of intellectual disability and mental illness.¹ Terms used to refer to people receiving any form of health care are important because they symbolise particular characteristics, needs and relationships – but they can also cause humiliation, shame and offence. As such, it is crucial to understand the views and preferences of those so labelled in order to minimise offence, enhance relationships and promote person-centred care.

The Oxford English Dictionary definition of ‘consumer’ includes: ‘a person who uses up a commodity; a purchaser of goods or services, a customer’ and/or, ‘a person who, or thing which, devours, wastes or destroys’.² People receiving public mental health care in Australia generally do not purchase any ‘goods’ or ‘services’ for their care, nor devour or waste anything. ‘Goods’ (e.g. written information and/or advice, taxi vouchers, scripts, and sometimes food/drink) may be provided by the service, free of charge. ‘Services’ (e.g. socioemotional supports, psychotherapies, Centrelink/medical certificates and referrals) may also be provided, generally free of charge. Thus the ‘purchaser’ definition of ‘consumer’, in the Australian context, is arguably erroneous and misleading. This definition may, however, be more appropriate in a country with no universal health care, or where ‘fee-for-service’ health care is commonplace (such as the USA, where the term ‘consumer’ originated).

Conceptual flaws regarding the term ‘consumer’ are more pronounced where a person is receiving involuntary mental health care (e.g. Community Treatment Order). To imply such a person is ‘choosing’ their legally mandated review with a psychiatrist, appointment with case manager and depot antipsychotic is arguably as offensive as it is illogical. ‘Consumer’ implies a business relationship – no such relationship exists between Australian public mental health services and those they care for, particularly where that relationship is a legally bound one.

‘Patient’ comes from Latin patientem (‘suffering, enduring, permitting…’)³ – an etymology of mixed connotations. On the one hand, it is entirely apt – people don’t seek health care for no reason; on the other, it may imply passivity, pathology and submission to medical authority.⁴ Indeed, the term ‘consumer’ (in mental health) was deliberately chosen to counter the negative connotations of the term ‘patient’ and instead imply an equal, active partnership in the care interaction.⁴ Context is crucial, however, and meanings change over time, and place. It is possible that contemporary Australians hold a very different understanding of the term ‘patient’ than mental health activists did fifty years ago in the USA. A more contemporary definition of “patient”, for example, is provided by the NSW Ministry of Health: ‘any person who receives a health service and to whom, as a result, a Health Practitioner owes a duty of care’.⁵ This definition is manifestly non-pathologising, non-business and implies a collaborative care exchange that emphasises the duty of care from the provider (including in non-disease settings such as perinatal care, cosmetic surgery and travel vaccinations). In this context, meaning of the term ‘patient’ becomes radically different to that which was rejected in favour of ‘consumer’ in the mid-70s USA. Accordingly, Bloch and Haslam⁶ recently argued that the concept of ‘patienthood’ is entirely compatible with a collaborative partnership between a psychiatrist and the person they care for.

Van Os argued that the mental health service of the 21^st century should include professionals trained to ‘maximise effects mediated by therapeutic relationships and the healing effects of ritualised care interactions’.⁷ The doctor–patient dyad remains one of the most cherished ‘ritualised care interactions’ in Australian sociocultural life; the ‘doctor-consumer’ dyad, not so. Indeed, multiple international surveys (of those receiving mental health care) have repeatedly demonstrated a preference for the term ‘patient’.⁸ Despite this, the only past Australian survey that sought to understand the views of those receiving public mental health care in this country demonstrated an overall preference for the term ‘client’ followed by ‘consumer’.⁹ Somewhat in keeping with these results, people currently receiving public mental health care in Australia are officially referred to as ‘consumers’.^10–12

Objectives

To understand a) whether people receiving public mental health care were aware they are officially referred to as ‘consumers’ and, b) their views and preferences on the terms used to refer to them. We sought to clarify any differences in preferences when a person consulted a doctor or a clinician. Given the only past Australian survey demonstrated an outpatient preference for the terms ‘client’ and ‘consumer’, and given the longstanding widespread official use of the term ‘consumer’, we hypothesised that most people would be aware they were officially referred to as ‘consumers’, and that most people would prefer this term.

Methods

A single-page, anonymous (to promote full and frank responses) survey was developed that included demographic, diagnostic/treatment variables and five questions regarding clinical terms (see Table 3). Reception staff offered surveys (and a brief explanation of the purpose) to case managed, adult clients awaiting appointments at both the Tweed and Byron Community Mental Health Services over a 3-month period (December 2021–February 2022). Participant Information Statements (PISs) were provided prior to participation. Surveys were not offered to new assessments, youth, old-age, CATT or other clients. Ethics approval was obtained from the NNSW HREC (approval no. QA415); implied consent was obtained by voluntary participation. Completed surveys were collected and securely stored each day; data was collated into Excel spreadsheets for proportional calculations.

Tweed Heads and Byron Bay are located in the most north-easterly part of NSW, Australia. Also known as the ‘Northern Rivers’, the region is known for its forests and beaches, holidays, relaxation and “alternative” lifestyles, living initiatives (e.g. permaculture and sustainability) and health practices. With a strong sense of community and social justice, the region describes itself as having a ‘liberal tolerance’ that ‘actively encourages acceptance of alternative cultures’.¹³ Main industries include health and social services, education and training, tourism (including accommodation and food services) and retail.¹⁴

Results

Over the three month study period, there were 488 adult, case-managed appointments (Byron 177, Tweed 311). 108 people completed the survey (Byron 36, Tweed 72) with an overall response rate of 22% (Byron 20%, Tweed 23%). Reception staff estimate roughly 25–50% declined the survey when offered (given the total number of appointments, this suggests the survey was not routinely offered to all people at all appointments). Most surveys (97.2%) were fully completed; 3 respondents (2.8%) only answered some of the 5 survey questions.

Most respondents were male (55%); the average age was 44 (see Table 1). Most were single (55%) and either living in a rental (34%) or their own home (33%). A third (32%) had completed year 12 and a fifth (19%), university. A large proportion (37%) were unemployed.

Table 1.

Demographic variables (self-reported*)

		n	%
Sex	Male	59	55
	Female	46	43
	Other	0	0
	Prefer not to say	3	3
Age	In years (mean)	43.9	43.9
Relationship	Single	55	51
	Partnered	22	20
	Married	14	13
	De facto	4	4
	Divorced	6	6
	Widowed	3	3
	Prefer not to say	4	4
Accommodation	Homeless	4	4
	Public housing	11	10
	Boarding house	0	0
	Supported accom	9	8
	Rental	37	34
	Own home	36	33
	Prefer not to say	3	3
	Other	9	8
Education	None	3	3
	Primary school	1	1
	Year 10	33	31
	Year 12	35	32
	University	20	19
	TAFE	14	13
	Trade	6	6
	Prefer not to say	6	6
Employment	Unemployed	40	37
	Part-time	29	27
	Full-time	15	14
	Volunteering	1	1
	Prefer not to say	18	17

Note: Where exact numbers do not add up to exactly 108, or percentages do not add up to 100%, it is because a respondent provided more than one answer, or no answer.

The most common (self)reported diagnosis was depression (28%) followed by ‘prefer not to say’ (24%) (see Table 2). A third (31%) reported severe mental illness (bipolar disorder, 17%; schizophrenia, 14%). The majority (69%) reported medication as their treatment; a minority (16%) reported ‘talking therapy’. Equal numbers (34%) reported both psychiatrist and case manager as ‘professional supports’; 21% reported a GP. Most (73%) said they were receiving voluntary care, 3% involuntary, but 16% responded ‘prefer not to say’ – some (8%) did not answer this question.

Table 2.

Diagnostic and treatment variables (self-reported)

		n	%
Diagnos(es)	None	2	2
	Schizophrenia	15	14
	Schizoaffective	5	5
	Bipolar	18	17
	Depression	30	28
	Anxiety	18	17
	Complex trauma	8	7
	OCD	2	2
	Personality disorder	3	3
	Prefer not to say	26	24
	Other	6	6
Treatment(s)	None	6	6
	Talking therapy	17	16
	Medication	74	69
	Prefer not to say	21	19
	Other	3	3
Professional support(s)	None	6	6
	Case manager	37	34
	Counsellor	6	6
	GP	23	21
	Psychologist	13	12
	Psychiatrist	37	34
	Prefer not to say	17	16
	Other	2	2
Legal status	Voluntary	79	73
	Involuntary	3	3
	Prefer not to say	17	16

Note: Where exact numbers do not add up to exactly 108, or percentages do not add up to 100%, it is because a respondent provided more than one answer, or no answer.

The vast majority (77%) were not aware they were officially referred to as ‘consumers’. A third (32%) disliked the term and 11% ‘found it offensive’; a significant number (39%) said they ‘didn’t care’ (see Table 3). Half (48%) felt those who received public mental health care should be referred to as ‘patients’ or ‘clients’ (36%); only 7% preferred ‘consumer’. The majority (55%) felt those who saw psychiatrists should be referred to as ‘patients’, slightly less (47%) felt those who saw clinicians should be referred to as ‘patients’. In both cases, ‘client’ was the next preferred term (32% and 34%, respectively); ‘consumer’ was considered preferable to only 5% and 6%, respectively. Similarly, 6% felt those who saw clinicians should be referred to as ‘service users’ (as is the practice in the UK).

Table 3.

Responses to survey questions regarding terminology

		n	%
Question 1. People who receive public mental health care in Australia are officially referred to as “consumers”. Were you aware of this?	Yes	25	23
	No	83	77
Question 2. How do you feel about being referred to as a “consumer”?	I Find it offensive	12	11
	I don’t like it	35	32
	I don’t care	42	39
	I Like it	8	7
	I Think it’s great	5	5
	Other	4	4
Question 3. In general, what do you think people who receive public mental health care should be referred to as?	Patients	52	48
	Service users	4	4
	Clients	39	36
	Consumers	8	7
	Customers	1	1
	Other	5	5
Question 4. What do you think people who see a mental health doctor (psychiatrist) should be referred to as?	Patients	59	55
	Service users	1	1
	Clients	35	32
	Consumers	5	5
	Customers	2	2
	Other	4	4
Question 5. What do you think people who see a mental health clinician should be referred to as? (a “clinician” could be a case manager, nurse, psychologist, social worker etc.)	Patients	51	47
	Service users	6	6
	Clients	37	34
	Consumers	7	6
	Customers	4	4
	Other	3	3

Note: Where exact numbers do not add up to exactly 108, or percentages do not add up to 100%, it is because a respondent provided more than one answer, or no answer to the relevant question.

Discussion

To our knowledge, this is the first Australian survey to ask people if they were aware they were officially referred to as ‘consumers’, and to specifically seek their views on this term. Disproving our hypothesis, most were not aware they were referred to as ‘consumers’; a third disliked the term, and 11% even found it offensive. Most preferred the term ‘patient’, especially when seeing a psychiatrist, replicating results from previous international surveys.⁸ Our results contrasted with those of the only previous Australian survey.⁹ We hypothesise that the differing results relate to the differing sociocultural milieus/attitudes of the two regions. The Lloyd study (2002) was conducted on the Gold Coast in Queensland – arguably a hub of holidays and unfettered consumerism; whereas our study was conducted in Northern NSW – arguably a hub of community, self-care and social justice (see methods). It is possible that respondents to our survey held cultural and/or philosophical objections to being labelled a ‘consumer’ when receiving public mental health care.

The World Health Organisation (WHO) defines ‘social stigma’ as ‘the negative association between a person or group of people who share certain characteristics and a specific disease’.¹⁵ Link and Phelan described social stigma as involving a label and a stereotype, with the label ‘linking a person to a set of undesirable characteristics that form the stereotype’.¹⁶ People who receive mental health care in Australia are currently given a label that is different to that which is applied to those who seek other forms of health care. That label (‘consumer’) is inextricably linked to a set of undesirable characteristics that form age-old stereotypes (‘mental disorders’). Many Australian outpatient clinics are physically co-located (including those in which this survey was completed); however, in one clinic there are ‘patients’ and in the other, there are ‘consumers’. By applying a separate term to those who receive public mental health care (as opposed to public orthopaedic care, for example), a social stigma is arguably perpetuated by those who, presumably, yet paradoxically, seek to diminish that stigma. It is possible that participants in our survey were acutely aware of this stigma and that this was reflected in their survey responses.

On a deeper sociological level, Moncrief recently argued that ‘the construction of the ideal neoliberal subject as an informed and intelligent consumer, who is fully responsible for their own wellbeing, both creates the conditions for increasing personal stress… and encourages people to look for solutions in the consumption of pharmaceuticals and other easily marketable products, such as short-term therapy’.¹⁷ Rampant consumerism arguably underpins (modern) capitalist systems, which form the backbone of contemporary western societies. At the core of consumerism is the perceived need to have more material possessions, fostering what Davies has called a ‘having mode of living’ (contrasted with a ‘being mode of living’).¹⁸ Davies argued that ‘consumerism exploits our dreams, our hopes and our human vulnerabilities. And its pursuit (and promises) has oriented living to such an extent that consumption has become an endpoint for much of our activity, making it difficult to envisage a life lived outside the materialistic grind’.¹⁸ Indeed, a recent meta-analysis of over 250 studies found a ‘clear, consistent, negative association between a broad array of types of personal wellbeing and people’s belief in, and prioritisation of, materialistic pursuits in life’.¹⁹ Thus, ironically, the term ‘consumer’ may be emblematic of the very social pressures, social/community incoherence and ‘materialistic grind’ that drives mental ill-health in the first place. Worse still, amidst acute mental ill-health, being labelled a ‘consumer’ implies a personal responsibility to ‘choose’ the correct treatment for one’s condition. A failure to improve may therefore be considered a failure of personal ‘choice’, and thus a failure of the individual (which is manifestly untrue). Given the sociocultural context of Northern NSW, it is very possible that respondents to our survey shared these deeper sociological views on ‘consumerism’ and being labelled a “consumer”.

Hypotheses aside, arguably the most important outcome of this study is the views and preferences of those whom the terms refer to. Irrespective of why, the majority wished to be referred to as a ‘patient’ when seeing a psychiatrist and the (relative) majority did not like ‘consumer’ or found it offensive. If we are to take person-centred care seriously, the views and preferences of those at the centre of that care should be respected, not dismissed in the name of good intentions. If the term ‘patient’ remains undesirable to government and policy makers despite these and other similar international results, perhaps consideration of an alternative (official) term to both ‘patient’ and ‘consumer’ should be had.

Limitations

This survey was of people receiving public, community-based care in a particular region of NSW, limiting generalisability. The response rate was (relatively) low, but sufficient given the total number of responses;²⁰ we suspect it was actually higher given the uncertainty relating to survey offers per appointment. Based on demographic, diagnostic/treatment variables, the sample appeared reasonably representative, but this was unable to be officially verified.

Further studies should survey people receiving care in metropolitan, rural/remote, private, inpatient and forensic settings and more receiving involuntary care. A correlational analysis of demographic, diagnostic/treatment variables and views/preferences on terms is intended as a follow-up study. This survey was only of those receiving care, it would be useful to survey those providing care (e.g. doctors/nurses).

Conclusion

In this survey of 108 adults receiving public community mental health care, the vast majority were not aware they were officially referred to as ‘consumers’. A third disliked the term ‘consumer’ and 11% found it offensive; the majority wished to be referred to as a ‘patient’ when seeing a psychiatrist. Further studies are needed to replicate these findings and should include broader sociodemographic variables. Official terminology used to refer to people who receive public mental health care should be person-centred and evidence based.

Footnotes

Author contributions

WL, AL and RB all contributed equally to the development and execution of the project. WL authored this manuscript. RB reviewed and provided advice on this manuscript.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical approval

Ethics approval for the study (ref. QA415) was obtained (05.08.2022) from the Northern NSW Local Health District Research Office under a non-Human Research Ethics Committee level of review in accordance with the National Statement on Ethical Conduct in Human Research 2007 (Updated 2018).

Informed consent

In this study, informed consent was implied by participants volunteering to complete the survey – this was deemed appropriate and acceptable by the Northern NSW Local Health District Research Office.

ORCID iD

William Lugg

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