March 2003
Occasional Paper – No. 2
Emancipation Songs: Individual Participation By Service Users
In Mental Health Care
By Jacob Read
'Individual participation' describes the processes involved in service users working
with mental health staff to achieve treatment goals. Service users assert that
participation is critical to their recovery and evidence from literature supports this
claim. Participating in making decisions regarding one's mental health is the
common thread amongst service users who live well in the presence or absence of
symptoms associated with mental illness (Copeland, 1994; Deegan, 1988; Fisher,
1992; Leete, 1989; Leibrich, 1999; Read,1996; Spaniol, Gagne & Koehler, 1999;
Williams, 1998).
Living well with mental illness involves service users finding their own definitions of
living well, and then making the decision to respond and work towards what is
important to them: psychological, spiritual, intellectual, emotional, physical, and
cultural well-being. Thus, living well can bring emancipation. Mental health
professionals and others must work with service users to facilitate this process.
Individual participation promotes holistic well-being by increasing one’s optimism or
as researchers call it - the positive responsiveness of an individual towards their
illness. The link between the positive responsiveness of a person towards their
illness and a good outcome has been documented by Peterson and Bossio (1991).
Individual service user participation in treatment raises hopes because it adjusts
the degree to which individuals believe they can control their own fate
(Prilleltensky, 2001). In other words, one cannot move forward without the
capacity to act in one’s own interest (Spaniol, Gagne & Koehler, 1999).
An analysis by the Mental Health Commission (2001) of training standards and
curricula for psychiatrists, comprehensive nurses, and social workers found that
there was little or no reference to recovery approach or service user participation.
Nonetheless, the National Mental Health Standard (Ministry of Health, 2001) aims
to foster individual service user participation by recommending that mental health
workers support:
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individual treatment plans
the views of each person who receives the service
giving the service user information about their rights
active participation in service delivery.
Such recommendations appear solid in theory, but to discover if they promote
participation in practice one must ask the following questions:
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What are the key aspects of individual participation?
How is individual service users capacity to participate facilitated?
In order to examine these questions I reviewed literature concerning service users
experiences and research about participation. As well, I analysed New Zealand
mental health policy and legislation. I also conducted semi- structured interviews
with consumer advocates and local users (all had been involved with the same
North Island in-patient service within the past 12 months). Five participating service
users had used the service voluntarily and the other two had been placed in the
service under compulsory treatment orders. The three participating consumer
advocates worked in various roleswith local consumers. I found that although the
number of participants was small, their experiences supported and illustrated key
points derived from literature.
The keys to individual participation
Service users’ power or capacity to participate is directly linked to the dominant
views held by the public and mental health staff about whether or not people with
mental illness are capable and worthy of participating. Participatory decisionmaking is only possible when both service users and mental health professionals
work in partnership. Equal partnerships between providers and service users are
difficult to establish because the balance of power is not equal. Service users
suggest mutual respect and sharing of knowledge, opinions and abilities are the
key contributing aspects to effective mental health partnerships. Service providers
must make a commitment to share power by consulting with the users of that
service. Consultation is an ongoing process, which enables service users to
advise on decision-making (Otto, 1990). The National Mental Health Sector
Standard (Ministry of Health, 2001) requires service providers throughout New
Zealand to consult with service users.
Individual participation can only take place when it is understood that it involves
four main factors:
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Positive public and mental health worker assumptions about service users’
abilities and knowledge
An atmosphere of trust and respect between users and providers
An individual service user’s desired level of input is reached
The service provides treatment choices.
Why individual service users want to participate
During in-patient admissions service users in this study suggested they would like
to participate with staff in making decisions about crisis plans, diagnoses,
medication, note taking, discharge and being able to choose from a range of
treatment options.
Service users in this study suggest their ability to participate during in-patient
admissions would promote recovery by facilitating:
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Hope
Self and mutual respect
Self- advocacy (an ability to assert one’s needs and wishes)
Concerns about non-participation
Recent studies reveal many service users nationwide have ongoing concerns
about limited service choices, and lack of respect from mental health staff. Service
users give the following as examples of this lack of respect: not being listened to,
not getting enough information about medication or mental illness labels, and
denials of their rights (Health Research Council, 2001; Lapsley, Nikora & Black,
2002; Mental Health Commission, 1999). Similarly, there was a common
perception amongst service users in this study that the local in-patient users were
unsatisfied with their level of individual participation. Service users suggested that
they were unable to assist in planning their treatment with staff, because staff did
not give them enough information about their illness, medications or alternative
treatments. As Mackenzie (2002) explains, often the only participatory aspect of
treatment in clinical situations involves psychiatrists asking questions to elicit
disclosure information from service users.
Mental health workers need to understand the rights that service users have.
These rights include: self-determination, autonomy, informed consent, and right to
refuse treatment (Mental Health Commission, 2001; the Human Rights Act, 1993).
However, there is an imbalance between those polices which act to protect service
users participatory rights and mental health legislation that gives in-patient services
the power to enforce treatment. I call this the 'legislative rights crush', because
service users’ rights are crushed when they are forced to accept treatment.
In theory, service users (both compulsory and voluntary) are protected by the
Health and Disability Code of Rights 1996.
The Disability Code of Rights states that:
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every consumer has the right to be free of coercion
every consumer has the right of independence as an individual.
However, under a compulsory treatment order under section 40 of the Mental
Health (Compulsory Assessment and Treatment) Act 1992, a duly authorised
officer may:
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Take all reasonable steps to take a patient against their will to hospital or any
other place that he/she is required to attend
Treat the patient against their will (Ministry of Health, 2001).
All in-patient services are expected to provide the least restrictive treatment
possible (even in compulsory situations designed to ensure that mental health staff
can deliver treatment). Conversely, examples from service users in this study
suggest that the provider prevented participation with the unnecessary use of
seclusion rooms and chemical restraint. These medical approaches restrict
participation.
As the only form of treatment, the medical approach does not promote
psychological, spiritual, intellectual, physical, and cultural well-being (Marinelli and
Dell Orto,1999). The medical approach impedes individual participation as it can
promote paternalism amongst mental health workers. Mental health workers with
biological or medical backgrounds are less likely to predict that outcomes for users
would improve as a result of individual participation (Kent & Read, 1998). The
medical approach encourages users to become patients. The term “patient” castes
the user as someone who is shackled and totally dependent upon mental health
experts for a 'cure'. Mental health workers who regard service users as patients
often view them as incapable of making decisions about their own treatments
(Lebrow, 1982). If "patients" are encouraged to believe only medication can
facilitate recovery, there is a danger that they could develop an external locus of
control because they may feel their participation is pointless. Paradoxically the
medical service attempts to help, but service users may be discharged feeling
more helpless.
In summary, individual participation is currently impeded by a combination of:
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Lack of information about holistic wellness
A service culture that does not promote participation in treatment planning
Few treatment options
An imbalance between the rhetoric of policy and the reality of legislative
restrictions
Restrictive treatment
Lack of resources.
Facilitating individual participation
Overall my analysis of literature and service users’ experiences indicates that there
is a need for more multi-level, multi-disciplinary approaches to foster individual
service user participation. Mental health workers from different schools of thought
need to constantly readdress their awareness and appreciation of the forces of
policies, attitudes and behaviours on mental illness. It is essential that the public
is educated about the fact that, statistically, the proportion of violent crimes carried
out by those who suffer from mental illness is very low, which is difficult for the
public to understand when they are drip-fed negative sensationalism from the
media. The public should be encouraged to view service users as a heterogeneous
group of deserving citizens, not to view all people with mental illness as dangerous
and undeserving of basic participatory rights.
In-patient mental health workers are expected to understand and accommodate
spiritual, moral, psychological, sociological and biological explanations of mental
illness (Mental Health Commission, 2001) thereby enabling service users to
choose from a range of treatment options. Additional clinical staff training in
recovery approaches and therapy options is required. In-patient services could
employ multi-disciplinary teams to ensure that at least one of the responsible
clinicians in the team has knowledge of all treatment options.
Service users suggest health professionals can facilitate recovery by stimulating
personal initiative, rather than dependence (Lapsley, Nikora, & Black, 2002).
Providers can facilitate initiative by setting aside more time to talk with service
users about their recovery needs and applying the use of up-to-date and supported
crisis/recovery plans. Service users can gain independence by increasing
knowledge of their own condition and educate themselves about legislation and
consumer rights. While knowledge is the doorway to power the right to apply that
knowledge is the handle that opens the door to participatory decision-making and
the exciting possibilities of a better future.
Summary of recommendations to facilitate individual participation
REVIEW:
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Discharge procedures
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Individual treatment planning processes
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The use of seclusion and chemical restraint practices
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Communication from staff to service users about mental condition and
medication.
INCREASE RESOURCES TO:
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Increase staff numbers
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Allow clinicians more time to consult with service users
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Provide more staff training in alternative therapies
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Educate service users about their rights and mental illness labels, treatments
and services.
OFFER HOLISTIC IN-PATIENT TREATMENT OPTIONS:
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Self-help (eg peer support)
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Psychological, (eg client centred therapy)
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Behavioural (eg cognitive behaviour therapy)
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Whare Tapa Wha
References
Copeland, M.E. (1994). Dealing with depression and manic depression for people with
mood disorders and those who support and love them. Innovation and Research 3 (4),
51-58.
Deegan, P.E. (1988). Recovery: the lived experience of rehabilitation. Psychosocial
Rehabilitation Journal 11, 11-19.
Everett, B. & Steven, L. (1989). Working together: A consumer participation research
project to develop a new model of high-support housing. Canada’s Mental Health, 1, 28-32.
Fisher, D.B. (1992). Humanising the recovery process. Resources (4), 5-6.
Health and Disability Commissioner (2000). Code of Health and Disability Services
Consumers’ Rights. Auckland: Health and Disability Commissioner.
Kent, H. & Read, J. (1998). Measuring consumer participation in mental health services.
International Journal of Social Psychology, vol 44, (4), pp. 293-310.
Lapsley, H; Nikora, L. & Black, R. (2002). "Kia Mauri Tau!" narratives of recovery from
disabling mental health problems. Wellington: Mental Health Commission.
Lebow, J. (1982). Consumer satisfaction with mental health treatment. Psychological
Bulletin, 91, (2), 86-224.
Leibrich, J. (1999). A gift of stories: discovering how to deal with mental illness (cit)
Dunedin: Otago University Press.
Lette, E. (1989). How I perceive and manage my illness. Schizophrenia Bulletin 15, 197200.
Mackenzie, H. (2002). Living with uncertainty: A grounded theory of psychiatric stigma
when seeking or maintaining employment. Unpublished PhD thesis, University of Waikato,
Hamilton, New Zealand.
Marinelli and Dell Orto (1999). The psychological and social impact of disability 4th ed.
pp.55-64. New York: Springer Publishing Company Inc.
Mental Health Commission. (1999). Mental health consumer participation in crown Health
Agencies: A review February-April 1999.
Mental Health Commission (2001). Recovery competencies for New Zealand mental
health workers. Wellington: Mental Health Commission.
Ministry of Health (2001). New Zealand Standard National Mental Health Sector Standard
(NZS 8143:2001). Wellington: MOH.
Ministry of Health (2001). Guidelines to the Mental Health (Compulsory Assessment and
Treatment) Act 1992. Wellington: Ministry of Health.
O’Connor, D. Clarke, D. & Presnell, I. (1999). How is psychiatry taught to Australian and
New Zealand medical students? Australian and New Zealand Journal of Psychiatry, 33,
47-52.
Otto, D. (1990). Unlocking the system: Consumer participation strategies in mental health
services. Thornbury, Victoria Australia: Victorian Mental Illness Awareness Council.
Peterson, C. & Bossio, L. (1991). Health and Optimism. New York: Free Press.
Prilleltensky, I. (2001). The role of power in wellness, oppression and political dynamics.
Unpublished paper. Available [online]: http://members.optusnome.com.au/power.htm
23/10/01.
Read, J (1996). Speaking our minds: An anthology. England:
MacMilian Williams, L. (1998).A “classic” case of border-line personality disorder.
Psychiatric Services 49, 173-174.
This article is a summary of a masters’ thesis submitted to the University of
Waikato by Jacob Read (email: icjread@xtra.co.nz). Thesis supervisors were
Beth Neill and Dr Mike Hills.
Disclaimer: The views in our Occasional papers are the views of the author(s).
The Commission endorses the overall direction of the papers in this series, without
necessarily agreeing with every detail expressed.