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Abstract

Advocates perform an important role in representing the rights of mental health consumers, especially since mental health consumers are often marginalized. Little is known about the processes advocates use to assist mental health consumers in navigating the healthcare system. This study details the manner in which advocates work together with mental health consumers and health professionals through presenting a qualitative synthesis of 60 case records. Four main themes emerged: negotiating on behalf of consumers during meetings with health professionals; liaising between consumers and health professionals outside of meetings; supporting consumer decision-making without the involvement of health professionals; and involvement in legal processes. The findings of this study demonstrated that advocates were primarily oriented towards the protection of negative rights, but also promoted positive rights.
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Qualitative Research in Psychology
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Advocacy processes in mental health: a qualitative
study
Norman Stomski, Paul Morrison, Martin Whitely & Pip Brennan
To cite this article: Norman Stomski, Paul Morrison, Martin Whitely & Pip Brennan (2017):
Advocacy processes in mental health: a qualitative study, Qualitative Research in Psychology, DOI:
10.1080/14780887.2017.1282567
To link to this article: http://dx.doi.org/10.1080/14780887.2017.1282567
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Advocacy processes in mental health: a qualitative study
Norman Stomski
a
, Paul Morrison
a
, Martin Whitely
b
, and Pip Brennan
b
a
Murdoch University, School of Health Professions, Murdoch, Australia;
b
Health Consumers Council,
East Perth, Australia
ABSTRACT
Advocates perform an important role in representing the rights of
mental health consumers, especially since mental health consu-
mers are often marginalized. Little is known about the processes
advocates use to assist mental health consumers in navigating
the health care system. This study details the manner in which
advocates work together with mental health consumers and
health professionals through presenting a qualitative synthesis
of 60 case records. Four main themes emerged: negotiating on
behalf of consumers during meetings with health professionals;
liaising between consumers and health professionals outside of
meetings; supporting consumer decision making without the
involvement of health professionals; and involvement in legal
processes. The findings of this study demonstrated that advo-
cates were primarily oriented toward the protection of negative
rights, but they also promoted positive rights.
KEYWORDS
Advocacy; consumer; mental
health; participation
Background
A recent systematic review of Australian mental health care services reported
that the rights of consumers were often transgressed (Griffiths, Carron-
Arthur & Mendoza 2015). Such violations include neglecting to provide
information about rights, lack of privacy, and inappropriate use of seclusion,
restraint, and detainment. Also, in the majority of cases consumers are not
involved in the development of care plans and rarely receive a copy of their
care plan (Auditor General Western Australia 2009). The prioritization of
coercive, paternalistic focused mental health care, over recovery-oriented
support, underlines advocacys importance in ensuring that consumer rights
are respected (National Mental Health Commission 2014).
Australian mental health care is most commonly delivered in community
settings. In regard to community-based care, an issue of notable concern
involves the sustained use of community treatment orders (Hickie, McGorry
& Christensen 2014). In part, this concern owes to the ongoing escalation in
the rate of Australian community treatment orders, which is high compared
to other developed countries (Light et al. 2012). Moreover, systematic reviews
CONTACT Norman Stomski N.Stomski@murdoch.edu.au 90 South Street, Murdoch, Western Australia
6150, Australia.
QUALITATIVE RESEARCH IN PSYCHOLOGY
http://dx.doi.org/10.1080/14780887.2017.1282567
© 2017 Taylor & Francis
have concluded that the use of community treatment orders result in con-
sumers experiencing no improvement in numerous outcomes, including
social functioning, quality of life, and service use (Kisely & Campbell 2015;
Maughan et al. 2014). Hence, there is often no robust justification for the use
of community treatment orders because they constrain civil liberties while
offering little benefit to the mental health consumers involved.
There has been a recent shift toward reducing the use of community
treatment orders in Australia, as evidenced by the enactment of legislation
that significantly restricts the criteria for coercive treatment in several jurisdic-
tions (Ryan, Callaghan & Peisah 2015). At present, the effect of such legislation
has only been evaluated in one of these jurisdictions. That evaluation was less
than promising since the use of community treatment orders had increased by
10% after legislation was introduced (ODonoghue et al. 2016).
The other main form of coercive mental health treatment used in
Australian settings involves involuntary detainment. Between 2009 and
2014 in Australia, there was a year-on-year increase in the rate of specialized
psychiatric inpatient admissions, of which about one-third were involuntary
(Australian Institute of Health and Welfare 2015). This increase was contrary
to recommendations for a greater proportion of mental health consumers to
be treated in community settings, especially since the prevalence of psychia-
tric disorders remained stable (Kirkbride et al. 2012; National Mental Health
Commission 2014). In light of the increase in involuntary inpatient admis-
sions and the previously noted high rate in use of community treatment
orders, there is apparently an overreliance on coercive treatment in the
delivery of Australian mental health care, which underlines the need for
accessible advocacy services.
Mental health consumers use several key forms of advocacy. Self-advocacy
involves consumers advocating on their own behalf (Lawton 2006). In con-
trast, individual advocacy involves an advocate working with a consumer on
a one-on-one basis to inform them about their rights and to develop and
work through a plan of action that addresses clearly defined goals (Australian
Institute of Health and Welfare 2016; Townsley, Marriot & Ward 2009). Both
self-advocacy and individual advocacy aim to ensure that the consumers
needs and choices are heard (Stewart & MacIntyre 2013). On the other hand,
systemic advocacy seeks to change legislation, policies, or practices that lead
to mental health consumers experiencing marginalization, neglect, or exploi-
tation (Smith & Gridley 2006).
Limited research has been undertaken in the field of mental health advo-
cacy. Studies in the United Kingdom have consistently found that mental
health consumers stated that advocacy was inaccessible (Care Quality
Commission [CQC] 2010; Grant 2004; Newbigging et al. 2015a). The use
of advocacy was also constrained by not understanding advocacys purpose
or the benefits that could be gained through using advocacy (Newbigging
2N. STOMSKI ET AL.
et al. 2015a). This limited understanding was associated, in part, with health
professionals failing to provide information about advocacy (CQC 2014;
Newbigging et al. 2007,2012).
The inability of consumers to access advocacy may detrimentally impact
recovery. In particular, when consumers have gained the assistance of advo-
cacy services, they report improvements in empowerment, self-efficacy, and
wellbeing (Mind 2006; Palmer et al. 2012). These improvements are further
enhanced when advocates proactively maintain in-person contact (Foley &
Platzer 2007; Newbigging et al. 2012).
Scant research has been conducted in an Australian setting about advo-
cacy for mental health consumers. In a study that examined the effect of a
person-centered advocacy model, mental health consumersreported
increased satisfaction with care during detainment, and after discharge
attended more follow-up consultations and were less likely to be involun-
tary detained (Rosenman et al. 2000). In the only other study of Australian
mental health advocacy, a review was undertaken of the strategic focus of
advocacy organizations (Gee, McGarty & Banfield 2015). That study con-
cluded that these organizations prioritized: enhancement of consumer
agency and recognition; working to refocus mental health systems on
consumer needs; facilitation of effective collaboration and partnerships;
and consolidation of organizational capacity.
With this background in mind, it is evident that the types of mental
health cases advocates handle and the manner in which advocates address
issues arising from these cases remain unexamined. This study bridges the
literature gap through detailing how advocates use an individual advocacy
model in working together with mental health consumers and health
professionals in resolving issues that consumers encounter in navigating
thehealthcaresystem.
Methods
The Murdoch University Human Research Ethics Committee granted ethical
approval for this study (2015/149). Data were collected from the Health
Consumers Council WA (HCC) advocacy case database. The HCC is an
independent, not-for-profit, community-based advocacy service operating in
Western Australia. It employs three professional advocates, who use an
individual advocacy approach, whereby health consumers are supported to
participate, engage and partner with the Western Australian health system as
result of their interactions with the HCC. Case records are written or updated
by advocates after each consumer contact in order to assist advocates in
following up complaints about health services. These records capture stan-
dardized details that include consumer demographic information, consumer
case history (medication and diagnosis details), consumer contact with health
QUALITATIVE RESEARCH IN PSYCHOLOGY 3
provider or health service, and contact with other complaint resolution
agencies. Each year the HCC handles the cases of about 600 consumers,
about one-third of whom are mental health consumers.
Sampling
The advocacy service de-identified all case records and assigned an anonymous
identifier to each case record before provision to the research team. The data
were extracted from 60 cases drawn from the 2014 and 2015 calendar years that
detailed issues for which mental health consumers sought advocacy. Purposive
sampling was used to select the case records (Braun & Clarke 2006). Initially, the
advocacy service selected 20 case records, which the advocates viewed as exemp-
lary consumer issues that the service commonly addressed. Two of the research
team members multiple coded the 20 records and developed a preliminary
thematic framework. The research team then requested additional 20 case
records that detailed staff neglect of consumer needs excepting medication issues
and detainment and case records that noted instances in advocacy did not result
in the outcome consumers initially sought. After coding that set of records, the
research team requested 20 further records that detailed cases in which advo-
cates discussed care options with health professionals during meetings, which
was the most underdeveloped theme. At this point, the themes were theoretically
saturated and no additional records were sought (Braun & Clarke 2006).
Data analysis
An inductive coding approach was used to identify emergent themes. We
first used line-by-line coding, whereby each individual line of the case
records was assigned initial codes that explained small components of the
data (Charmaz 2014). These codes were succinct, precise, and active, which
remained close to the data and assisted in identifying processes. Focused
codes were then developed by using constant comparison to group together
similar initial codes. The most incisive, salient focused codes were used to
sort and elucidate larger sections of data (Charmaz 2014). These focused
codes then formed the basis of themes that articulated important advocacy
processes for mental health consumers.
Findings
Participant characteristics
In about three-quarters of the case records, advocacy support was sought for
female mental health consumers. Consumers initiated the majority of con-
tacts with the advocacy service, whereas carers initiated less than one-quarter
4N. STOMSKI ET AL.
of the contacts. More than half of the consumers were located in the com-
munity, and about three-quarters were of voluntary status.
Primary themes
Four main themes emerged from the inductive analysis, each of which
reflected a broad, general process that advocates used to support mental
health consumers. Hence, this article is a distillation of the advocates
accounts of the consumer issues and what was done to address them from
their advocacy service perspective.
Extracts from the case records, each of which has been assigned a unique
identifier, have been provided to further delineate the themes, which are
presented below in the following sections.
Assisting consumers during meetings with health professionals
The advocates on certain occasions acted primarily as a supportive presence
during meetings between health professionals and either mental health con-
sumers or carers [1C1; 4C5; 24C35]. One consumer noted that the presence
of an advocate resulted in a psychiatrist acting in a far friendlier and less
pushymanner than in previous consultations [4C5]. The psychiatrists shift
in attitude was also evident in accepting the consumers preference for a
particular type of medication, which relieved the anxiety that the consumer
had experienced. Another consumer, who was pregnant, asked an advocate
to attend a meeting with public sector psychiatrists [24C35]. At the subse-
quent meeting, the psychiatrists stated that it might be necessary to admit the
consumer after the birth of the child, primarily because the psychiatrists
believed that her argumentative manner was suggestive of re-emerging ill-
ness. However, the consumer disagreed and noted that she was arguing with
him because she did not trust him.That decision was supported by an
advocate and private sector psychiatrist, and the consumer and infant were
both thriving at home, without any hospitalization episode, when the advo-
cate last made contact. The final case in the supportive presence section
involved meetings between health professionals and a carer seeking to reduce
the medication dosage and manner in which it was administered to their
elderly partner [1C1]. At that meeting, and several subsequent meetings that
the advocates also attended, the staff agreed to taper the medication dosage
and eventually withdraw it, along with ensuring that only trained staff could
administer the medication.
In addition to providing a supportive presence, the advocates often nego-
tiated with health professionals during meetings at which consumers were
also present [2C3; 5C7; 13C24; 38C49; 47C58; 50C61; 60C71]. Most of these
negotiations revolved around medication issues. On some occasions,
QUALITATIVE RESEARCH IN PSYCHOLOGY 5
voluntary consumers asked advocates to attend meetings as they were reluc-
tant to comply with suggested medication regimes but were anxious about
being made involuntary if they did not follow the directions of health
professionals [5C7; 38C49]. In one of these cases, the health professionals
persistently and strongly insisted on the consumer receiving the recom-
mended injection [38C49]. This coercive type of manner prompted the
advocate to clarify that [the consumer] was a voluntary patient and rein-
forced that it was therefore [the consumers] choice,which enabled the
consumer to discontinue the medication. In the other case, at the outset of
the meeting the advocate gently noted that the consumer was very anxious
about complying with the proposed medication regime [5C7]. The health
professionals then stated that the medication could reduce the anxiety, after
which the consumer hesitantly agreed to adhere to the medication regime.
Subsequently, the consumer mentioned to the advocate that the staff had
eased off and seemed friendlier.
Concerns about medications were also raised by an involuntary consumer
[13C24] and carer of an involuntary consumer [60C71]. In the former case,
the advocate and health professional reviewed together information about the
medication [13C24]. The advocate then confirmed to the consumer that the
dosage recommended by the health professional was below the typical ther-
apeutic dosage. After the meeting, the consumer noted that the advocates
advice was reassuring and had changed their intention to challenge a com-
munity treatment order. In the other case, the advocate attended a meeting
between health professionals and the carer of a consumer who experienced
moderate dementia [60C71]. The carer was concerned that a lack of exercise
had contributed to a recent myocardial infarction At the meeting, the
advocate negotiated with the carerspsychiatrist and cardiologist where it
was agreed to taper the dose downwards and enable a private physiotherapist,
paid for by [the carer], to work with [the consumer] in the hospital.
The other main issue that advocates discussed at meetings with consumers
and health professionals involved modifying care plans [2C3; 47C58; 50C61].
In one instance, a visually impaired adult consumer was concerned about
continuity of care as they transitioned from care delivery by a public mental
health team to a general practitioners care [2C3]. At the advocates sugges-
tion, the health professionals agreed to provide one of the consumers parents
with all future relevant medical documentations, which would enable them to
subsequently discuss ongoing care in light of prior treatment. Another case
concerned a morbidly obese, voluntary inpatient consumer who was feeling
pressured to have bariatric surgery, as losing weight is one of the conditions
she must meet in order for her to have the support of her treating team to
live outside the public residential psychiatric clinic[50C61]. The advocate
clarified that the consumer could refuse the surgery, and had the treating
team agree to work together with the advocate in obtaining independent
6N. STOMSKI ET AL.
accommodation for the consumer. The final case in this section involved an
advocate attending a meeting between health professionals and a consumer
concerned the transfer of care to health professionals in another state
[47C58]. The consumer was reluctant to raise this issue, and the advocate
on the consumers behalf clarified that their medical records could be
provided to the new treatment team.
Liaising between consumers and health professionals outside of meetings
Liaising between consumers and health professionals outside of meetings was
perhaps the most common form of advocate intervention. Such intervention
typically concerned either unlawful detainment [21C32; 22C34; 30C41; 35C46],
concerns about being classified as an involuntary patient [3C4; 10C18; 11C20;
59C70], obtaining medical records [20C31; 23C34; 33C44; 41C52; 42C53], or
gaining access to medical care [16C27; 17C28; 46C57; 56C67].
Of the cases involving unlawful detainment, health care staff recognized that
it was unlawful in only one instance [35C46]. The staff in the remaining cases
stated that the consumers were unable to leave without permission, despite their
voluntary inpatient status [21C32; 22C34; 30C41]. The advocates arranged the
release of all of the consumers through two main forms of intervention.
Consumers were typically allowed to leave after the advocates had persistently
discussed the issue with staff at the facilities [21C32; 30C41; 35C46], but in one
case the advocates had to raise the unlawful detainment with the chief psychia-
trists office before the consumer was discharged [22C34].
In the cases where advocates liaised with health professionals about the
possible enactment of community treatment orders, all of the consumers
reported considerable anxiety about the prospect of it occurring [3C4; 10C18;
11C20; 59C70]. This anxiety resulted from wanting to reduce the dosage of
medication [59C70], health professional home visits [11C20], treatment
review meetings [3C4], or simply intending to contact health professionals
[10C18]. In all of these cases, the advocates contacted the relevant health
professionals, confirmed that the consumers would not be placed on com-
munity treatment orders and then informed the consumers, which alleviated
the consumersanxiety.
There were various decisions about care options for which advocates
liaised with health professionals on behalf of consumers [16C27; 17C28;
46C57; 56C67]. Some cases involved access to care issues, whereby one
consumer wanted to receive electroconvulsive therapy as an outpatient
[17C28], and another consumer sought admission to a facility because of
suicidal thoughts [46C57]. The advocates resolved the former issue, but were
unsuccessful in addressing the latter issue. Another case involved an inpa-
tient consumer who about to be discharged despite lacking accommodation
[56C67]. In this instance, the advocate collaborated with a social worker at
QUALITATIVE RESEARCH IN PSYCHOLOGY 7
the facility to organize suitable accommodation. The remaining case invol-
ving care options concerned a consumer who was upset about being denied
access to a phone to talk to [the consumers] children before their bedtime by
a nurse on her ward[16C27]. The advocates were able to arrange phone
access the following day after discussing the issue with staff.
The remaining main issue for which the advocatesprimary role was to
facilitate communication between consumers and health professionals
involved concerns about medical records. Some cases related to consumers
disputing statements in medical records, and in these instances the advocates
assisted in drafting letters that detailed the concerns, which were then for-
warded to senior management staff [41C52; 42C53]. The other cases involved
the advocates assisting consumers in gaining access to medical records
[23C34; 33C44]. The advocates in one of these cases were provided with
the records after informing staff that they could be obtained through a
freedom of information request [23C34], and in the other case the records
were only provided following the lodgment of a formal written request
[33C44].
Supporting consumer decision making without the involvement of health
professionals
The advocates often provided general advice about care to mental health
consumers or carers without involving health professionals. Such advice most
commonly concerned information about medications [1C1; 8C14; 29C40;
36C47; 40C51]. In some instances, voluntary consumers asked whether they
needed to comply with prescribed medication regimes, which the advocate
noted was a discretionary decision since the consumers were not subject to
treatment orders [29C40; 40C51]. Advocates also provided carers with infor-
mation about medication side effects [8C14], advice regarding the possibility
of gradually reducing medication dosage [1C1], and that carers could not be
involved in medication decisions without the consumers consent [36C47].
Mental health consumers also asked advocates for information about care
issues that were not concerned with medication. One case involved a con-
sumer who was seeking admission to a privately run mental health facility to
support her through a proposed change to her medication regime. However,
staff at the facility said she could not be admitted as she was not mentally ill
[57C68]. An advocate advised the consumer to ask their psychiatrist to
discuss the issue with staff at the inpatient facility, which subsequently
resulted in the consumer gaining admission. Another case concerned a
voluntary inpatient consumer with a history of self-harm, who expressed
[their] wish to leave the hospital, but had been informed [they] would be
made involuntary if [they] did[31C42]. The advocate informed the con-
sumer that the staff would likely use the history of self-harm to reclassify
8N. STOMSKI ET AL.
them as an involuntary patient. Hence, it would be best to presently comply
with the staffs recommendations and maintain their voluntary status, which
would enable them to exercise their own will in leaving the facility once their
condition had stabilized.
Clarifying the meaning of mental health treatment forms was the final type
of issue that advocates and consumers resolved without the involvement of
health professionals. In such cases, the advocates notified consumers that the
forms related to either the termination of an involuntary treatment order
[9C17] or authority to detain and transport to hospital for psychiatric
assessment [19C30].
Involvement in legal processes
Mental health consumers and carers often contacted the advocacy service for
assistance with legal or quasi-legal processes. One of the more common legal
processes detailed in the case records involved contesting community treat-
ment orders [12C21; 25C36; 28C39; 54C65]. The enforcement of the com-
munity treatment order in one instance was especially concerning since the
consumer was required to comply with an antipsychotic medication injection
regime, despite experiencing neuroleptic malignant syndrome, a potentially
life threatening adverse reaction [12C21]. In two of the other cases, the
consumers challenged the orders because of a perceived lack of medication
efficacy coupled with unpleasant adverse effects [25C36; 28C39]. The
remaining case involved a consumer who contested the order as it was
enacted without any explanation [54C65]. The advocacy service assisted in
challenging the community treatment orders through either engaging legal
support [12C21; 25C36; 54C65] or preparing applications to the Mental
Health Review Tribunal [28C39]. The community treatment orders were
discontinued in all but one of these cases.
Some of the case records detailed instances in which carers were seeking
advocacy support in contesting the guardianship of mental health consumers
[7C12; 39C50]. In one of these cases, the advocacy service assisted in preparing
a successful legal application, which resulted in the consumers preferred carer
becoming their guardian [7C12]. The other case involved a carer who sought to
assume guardianship of his or her intellectually disabled sibling because the
carer believed that high dosages of antipsychotic medication had caused tardive
dyskinesia [39C50]. The advocacy service suggested that contesting guardian-
ship on such grounds could be counter-productive since it may be perceived as
challenging the experts.This advice appears to have been judicious as the
carer stated feeling portrayed as a caring but interfering in [the consumers]
treatment and this was the primary reason [they were] unsuccessful.
One of the other legal issues for which consumers sought the assistance of
the advocacy service concerned challenges to involuntary inpatient admissions
QUALITATIVE RESEARCH IN PSYCHOLOGY 9
in mental health facilities [11C20; 14C25]. In the first case, a consumer was still
held in a locked ward one week after having been reclassified as a voluntary
patient, apparently because a key staff member was on sick leave [14C25]. The
advocacy service liaised with the Council of Official Visitors, who then
arranged the immediate release of the consumer. The second case involved
the advocacy service contacting health professionals on behalf of a consumer to
determine whether the consumer might be classified as an involuntary patient
[11C20]. On the advice of the health professionals, the advocacy service
informed the consumer that there were no such plans. However, a few days
later the consumer rang the advocacy service and informed them [that they]
had been made an involuntary patient and given an injection against [their]
will. The HCC advocate immediately rang the Council of Official Visitors
(COOV)The COOV advocate followed up and [the consumer] was made a
voluntary patient and then discharged.
Assisting in the preparation of compensation claims was the final type of legal
process that the advocacy service helped consumers to undertake [27C38;
32C43; 49C60]. One of these cases was especially troubling since it involved a
child who had attempted suicide on several occasions [27C38]. These attempts
had occurred after the consumer had begun taking three different medications
concurrently, all of which were associated with an increased risk of suicide. At
no point in time were the consumers parents informed of such risk. Another
case involved the breach of a consumers confidentially, which ensued when a
psychologist in a small regional town distributed a notice through email without
blinding the approximately 30 recipients [49C60]. The final compensation case
concerned a consumer who experienced considerable side effects after commen-
cing antipsychotic medication, which ceased after the medication was discon-
tinued [32C43]. In all of these compensation cases, the advocacy service
facilitated meetings with lawyers, and in two of the cases complaints were lodged
with the Australian Health Practitioner Regulation Agency [27C38; 49C60].
Discussion
The advocates in this study undertook several different activities. In most
instances, the activities accorded with the mental health consumers initial
directions, and took the form of attending meetings and providing a suppor-
tive presence, actively collaborating with consumers during negotiations with
health professionals, or engaging with health professionals on the behalf of
consumers without the consumersimmediate involvement in the interac-
tion. However, on some occasions the advocates suggested that the consu-
mersinitial directions might be contrary to their best interests and proposed
alternative approaches to addressing the issues. The consumers in most cases
followed the advocatesadvice, but when the consumers wanted to proceed
10 N. STOMSKI ET AL.
against advice the advocates in at least one instance adhered to the consu-
mersdirections.
The manner in which advocates in certain instances suggested that alter-
native approaches, which differed from original instructions, might result in
the promotion of the consumers best interests was similar to the approach
described in a previous study of advocacy (Rosenman, Korten & Newman
2000). In that study, when the consumers directions diverged from their best
interest, the advocate developed an understanding of the consumersvalues
and reached a decision about what the consumers would choose if they had
insight into their own best interest. Such an understanding was then used to
attempt to arrange treatment that the consumer considered to be acceptable.
This model of advocacy resulted in increased satisfaction with care and
reductions in subsequent cases of involuntary detention (Rosenman et al.
2000). Nonetheless, in using this approach, there is the potential that advo-
cates could shift from a collaborative partnership to a paternalistic stance,
whereby they believe they know whats best and not adequately take con-
sumersviews into account. Hence, advocates should carefully reflect on
beliefs or attitudes that may influence their own judgment when suggesting
approaches that differ from the instructions put forward by consumers.
In many of the case records it was evident that the advocacy service
promoted consumer involvement in decision making. At times, the mere
presence of advocates appeared to strengthen a consumers position in
negotiations with health professionals, as health professionals were more
inclined to accommodate the health care preferences of consumers even
when advocates attended meetings without contributing to the discussion.
More typically, however, the advocates actively engaged with health profes-
sionals, especially through reinforcing the rights of consumers, which then
led the health professionals to incorporate consumer preferences in health
care decisions. This active advocacy role has been conceptualized as a lever,
bridge,or hammerin a previous U.K. study of advocacy services
(Newbigging et al. 2015a). The other main approach the advocates used to
enhance the agency of consumers in decision making was through providing
information that enabled them to reach informed decisions. Such informa-
tion typically concerned their rights as voluntary or involuntary consumers,
generally in relation to medication, detainment, or access to care.
Another frame through the provision of advocacy can be understood
involves considering how it influences negative and positive rights.
Negative rights have been conceptualized as the protection of individual
freedom against excesses of the state, whereas positive rights are based on
the promotion of dignity, equality, and antidiscrimination (Spandler &
Calton 2009). In terms of mental health care, negative rights often revolve
around coercive treatment issues, and positive rights commonly concern
access to health care, housing, and welfare (Newbigging et al. 2015b). The
QUALITATIVE RESEARCH IN PSYCHOLOGY 11
findings of this study demonstrated that the advocacy service tended to be
oriented toward the protection of negative rights, with many of the case
records involving coercive treatment. However, numerous case records
detailed issues about access to care, and one case record involved the service
finding accommodation for a consumer, which showed that the advocacy
service also supported positive rights.
Itwasunsurprisingtofindthatmanyofthecasesinthisstudycon-
cerned consumers seeking to challenge coercive treatment involving either
community treatment orders or involuntary detainment. Several studies
have reported that consumersexperience of coercive treatment is inten-
sely distressing (Gibbs et al. 2005;Lightetal.2014;Morrisonetal.2015,
2016;OReilly et al. 2006; Wyder et al. 2015). However, the distress arising
from coercive treatment can be mitigated by the approach health profes-
sionals use to implement the treatment (Light et al. 2014; Wyder et al.
2015). In particular, strategies that alleviate distress include explicit expla-
nation of the order, engaging consumers in decisions about their care,
demonstrating an empathic understanding of mental illness, and improv-
ing access to mental health services and other support services (Light et al.
2014; Wyder et al. 2015). Importantly, delivering health care in such a
manner should not be viewed as an aspiration but rather as a reciprocal
obligation given the constraint on civil liberties imposed through coercive
treatment (Brophy 2013;Dawson2008;McDougall2004;Morrison&
Stomski 2015).
It was concerning to find that the cases commonly detailed instances in
which voluntary consumers were informed that coercive treatment would be
enacted if they did not comply with recommended treatment. These types of
directives may reflect a deliberative orientation, involving a transition from
persuasion to coercion in light of perceived best interests (Feiring & Ugstad
2014). However, several studies found that the predisposition toward impos-
ing coercive mental health treatment stems mainly from paternalistic atti-
tudes, which hold that consumers lack insight and are incapable to make
informed decisions (Diseth, Bogwald & Hoglend 2011; Emanuel & Emanuel
1992; Feiring & Ugstad 2014; Pelto-Piri, Engstom & Engstrom 2013). Such
attitudes should be reconsidered since they are likely to impair mental health
consumersrecovery and quality of life (Hungerford et al. 2016).
All records may have elements of bias since they are shaped by the record
takers subjective views and extent to which consumers disclose relevant
information. Therefore, several procedures were used to mitigate bias
through enhancing the rigor of this study. First, purposive sampling was
used to reduce selection bias, particularly through seeking deviant cases
(Harding & Gantley 1998). Second, two researchers developed the thematic
framework through multiple coding involving two researchers (Barry et al.
1999). Finally, respondent validation was undertaken by distributing the
12 N. STOMSKI ET AL.
results to advocates at the service at which this study was conducted and
requested that they confirm that the material reflected the manner in which
cases were addressed (Torrance 2012).
Conclusion
This analysis of advocacy case records furthers an understanding of the
experience of consumers in navigating the mental health care system and
the manner in which advocacy services can assist consumers. Our findings
indicate that advocates typically resolved the concerns for which consumers
sought support, thereby maintaining the rights of individuals who may be
vulnerable and marginalized. The resolution of most concerns demonstrates
that they were usually valid and unrelated to illness symptoms or lack of
insight. Further research would be especially beneficial to identify particular
advocacy processes that most effectively address the concerns of mental
health consumers. Also, the findings of this study reflected the perspectives
of advocates, and it would be worthwhile to undertake studies with mental
health consumers to understand their views about the manner in which
advocacy can protect and promote their rights.
Notes on contributors
Norman Stomski holds a PhD in the health sciences and works as a postdoctoral researcher at
Murdoch University. Norman has undertaken research across a broad range of areas,
including mental health, chronic pain, and Indigenous health. He has a particular interest
in understanding how the interactions between health professionals and consumers influence
health outcomes.
Paul Morrison is the Dean of Health Professions at Murdoch University. He has experience in
health care and university settings in Ireland, the United Kingdom, and Australia. He worked
as a mental health nurse and general nurse before completing tertiary studies in psychology
(BA, PhD), education (PGCE), and counseling (GradDip). Paul is an experienced teacher,
researcher, and writer. He is also a registered psychologist, a member of the Australian
Psychological Society (MAPS), a Chartered Psychologist (CPsychol), and an Associate
Fellow of the British Psychological Society (AFBPsS).
Dr. Martin Whitely is a mental health advocate, researcher, author and former politician.
While a Member of the Western Australia Legislative Assembly (20012013) he influenced
Attention Deficit/Hyperactivity Disorder prescribing practices within Western Australia,
contributing to a 50% fall in child prescribing rates between 2002 and 2010. A focus of
Martins advocacy has been exposing and reducing what he asserts is regulatory capture,
primarily by the pharmaceutical industry, of research, treatment guidelines, and prescription
drug licensing and safety monitoring processes. He has also been prominent in highlighting
concerns about diagnostic creep”—the loosening of the diagnostic criteria of psychiatric
disorders, potentially leading to inappropriate labelling and harmful over-medication. His
book Speed Up and Sit StillThe Controversies of ADHD Diagnosis and Treatment was
published in 2010 (UWA Publishing). He has also written numerous shorter items on
QUALITATIVE RESEARCH IN PSYCHOLOGY 13
ADHD and mental health. He completed his PhD thesis ADHD Policy, Practice and
Regulatory Capture in Australia 19922012 at Curtin University in 2014.
Pip Brennan has worked in the community sector for the last 15 years. Inspired by her own
experiences of the confusing maternity care system, Pip initially volunteered as a maternity
consumer representative in a range of roles. She began her paid health career as an Advocate
working at the Health ConsumersCouncil (HCC) from 2006. She then moved to the Office
of Health Review (now the Health and Disability Services Complaints Office) in 2007 and
took up a position as a Conciliator of Health Complaints. In 2009 she began working at
Community Midwifery WA (Now The Bump WA), while also working on a pilot project in
the victim support services sector, Reclaiming Voices. In 2010 she took on the role of
Manager of CWMA until 2013. She spent 2014 working at WACOSS on outcomes based
contracting in the health not for profit sector project before returning to HCC to take on the
role of Executive Director. Pip sits on the Executive Board of the WA Health Translation
Network and works closely with the Consumer and Community Engagement Network. This
has evolved from the Involving People in Research Project, for which Pip is an Ambassador.
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... Although advocacy is commonly raised in social work literature, there is little research available that considers social work advocacy in involuntary mental health settings in the Australian context. Research on individual advocacy in involuntary mental health more generally is limited but developing, both in Australia and overseas (Maylea et al., 2019;Newbigging et al., 2012;Stomski, Morrison, Whitely, & Brennan, 2017). The power asymmetries in involuntary mental health settings are stark, and advocacy is as often directed at the mental health system itself (Newbigging & Ridley, 2018). ...
... This is an environment where advocacy is clearly necessary; people in Australian mental health services are often not provided with information about their rights, inappropriately restrained and secluded, and not involved in decisions about their treatment (Griffiths, Mendoza, & Carron-Arthur, 2015). Advocacy can result in improvements in consumer self-efficacy, empowerment and wellbeing, and fewer involuntary interventions (Stomski et al., 2017). Schneider and Lester (2001) have identified 90 different definitions of social work advocacy, illustrating the difficulty in defining this nebulous concept. ...
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Advocacy has received less attention in social work research than other aspects of social work practice. This paper draws attention to two tensions in social work advocacy; between worker-led advocacy and person-led advocacy, and between individual advocacy and system level advocacy. We argue that human-rights-based social workers must choose a person-led approach over a worker-led approach while advocating with both systems and individuals. This argument is made by drawing on findings of an evaluation of Independent Mental Health Advocacy (IMHA) in Victoria, Australia. It is shown that social work training had not prepared social workers for rights-based, person-led advocacy and that social workers in public mental health services were struggling to maintain the rights of people in their services even with assistance from IMHA. IMPLICATIONS • Independent Mental Health Advocacy (IMHA) is a model of advocacy influenced by social work theory and delivered in part by social-work-trained advocates. • Social work training is not preparing social workers for person-led, human-rights-based advocacy. • Public mental health social workers are struggling to maintain the rights of people in mental health services even with the support of external advocacy services.
... There is only a limited empirical understanding of the mechanisms and processes by which inpatient treatment aids recovery of hospitalised mental health patients in distress (Smith & Spitzmueller, 2016;Thomas, Shattell, & Martin, 2002). Existing studies of established principles of inpatient care, such as genuine respect, collaboration, and promoting patient autonomy, tend to be implemented to only a limited extent (Oeye, Bjelland, Skorpen, & Anderssen, 2009;Oute, 2018;Stomski, Morrison, Whitely, & Brennan, 2017;Waldemar, Arnfred, Petersen, & Korsbek, 2016). ...
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... As with previous research, there was an emphasis upon the importance of information provision and the timing of such information provision (Katsakou et al, 2012;Akther et al, 2019). There was also an emphasis on access to independent advocates, which chimes with prior research on the importance of advocacy (Stomski et al, 2017). Where service users had such knowledge, they felt empowered in employing it. ...
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... It should also describe the strategies and resources to achieve these outcomes and should give clear criteria for assessing the satisfaction and outcomes of care for the consumer (Bee et al. 2015a;McHugh & Byrne 2012). However, the research indicates that mental health service staff often fail to develop meaningful well thought out care plans with consumers (Bee et al. 2015a;Bee et al. 2015b;Doody et al. 2017;Stomski et al. 2017). Consumers and their carers have expressed dissatisfaction with a lack of therapeutic engagement in mental health services (McAllister et al. 2019;Rydon 2005;Tee et al. 2007;Theodoridou et al. 2012;Walsh & Boyle 2009), and that they want strengthbased approaches based on concepts of recovery (Dobie, Bulla & Swanke 2010;Henderson et al. 2010;Rose 2003). ...
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... In addition, cultural change requires time, and more immediate solutions are therefore required to foster service user participation in decisionmaking. As such, the importance of individual advocacy needs to be highlighted, as research has shown that health professionals are more accommodating of service user preferences when advocates attend consultations [41,42]. ...
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In some Australian states clinicians and mental health tribunal members are already required to assess a person's decision-making capacity before involuntary treatment can be applied. Professionals in other jurisdictions will likely soon be required to do the same as mental health law reform in most Australian jurisdictions makes the assessment of decision-making capacity a central component of the process of providing unconsented psychiatric treatment. We provide a guide to the legal issues around the capacity to refuse psychiatric treatment to assist with this task. We review the legislation in the four Australian states most advanced in the mental health law reform process and use examples from clinical practice and the common law to describe how decision-making capacity should be assessed by these statutory standards. Clinicians and tribunal members will primarily be required to judge whether a person with mental illness can understand the information relevant to the treatment decision and whether he or she can use or weigh that information to come to a decision. A person with a mental illness is presumed to have capacity, but that presumption can be rebutted. Capacity is specific to the decision at hand and cannot be determined by the nature of the decision made. The information provided should assist clinicians and tribunal members to make determinations of decision-making capacity around treatment refusal in the context of mental illness. © The Royal Australian and New Zealand College of Psychiatrists 2015.
Article
Objectives: Community treatment orders (CTOs) are a controversial practice as they extend the practice of involuntary treatment into the community. This study aimed to determine whether there was a difference in the rate of CTOs and revocation (readmission) orders following the implementation of a recovery-orientated model across four adult mental health services. Methods: A retrospective cohort study was conducted prior to and after the reconfiguration of services. Population data for those aged 15 to 65 were obtained from a census and rate rates were calculated. Results: Prior to the reconfiguration, there were 893 individuals subject to a CTO and 136 of these individuals had a revocation of their CTO (i.e. were involuntarily readmitted). This represented a rate of 100.8 individuals on CTOs per 100,000 population and a rate of 15.4 revocations per 100,000 population. Following the reconfiguration, the rate of CTOs increased by 10% and there was a trend for the rate of revocation orders to have decreased by 17%. Conclusions: Rates of CTOs and readmissions varied across services and further research is warranted to identify factors associated with these increased rates. Additionally, the very high rate of CTOs in the catchment areas warrants further examination.
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DURING the last two decades or so, there has been a struggle over the patient's role in medical decision making that is often characterized as a conflict between autonomy and health, between the values of the patient and the values of the physician. Seeking to curtail physician dominance, many have advocated an ideal of greater patient control.1,2 Others question this ideal because it fails to acknowledge the potentially imbalanced nature of this interaction when one party is sick and searching for security, and when judgments entail the interpretation of technical information.3,4 Still others are trying to delineate a more mutual relationship.5,6 This struggle shapes the expectations of physicians and patients as well as the ethical and legal standards for the physician's duties, informed consent, and medical malpractice. This struggle forces us to ask, What should be the ideal physician-patient relationship? We shall outline four models of the
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There is increasing evidence that an involuntary hospital admission and treatment can undermine the therapeutic relationship. While good relationships with staff are important factors influencing long-term recovery, there is little information on how people experience their relationships with staff while under an involuntary treatment order (ITO). Twenty-five involuntary inpatients were interviewed about their experiences of an ITO. The interviews were analysed by a general inductive approach. Participants described the following themes: (i) the ITO admission was a daunting and frightening experience; (ii) staff behaviours and attitudes shaped their experiences in hospital; (iii) importance of staff listening to their concerns; (iv) importance of having a space to make sense of their experiences; (v) importance of staff ability to look beyond their illness and diagnosis; and (vi) importance of staff working in partnership. These findings highlight that when using recovery principles, such as an empathic engagement with the patients' lived experience, forging partnerships with patients in treatment decision-making to enhance agency, an involuntary treatment order does not have to limit the ability to establish positive relationships.