In this section the word 'consumer' is used to describe people with a mental illness who are consumers of mental health services. The use of this word reflects current language trends in Australia (e.g. 'consumer movement'). It has, in many instances, replaced the term 'patient' as a means of reflecting the active and co-operative nature of contemporary health treatments and services.
What is consumer empowerment?
Consumer empowerment is about shifting the balance of power from service providers, who have traditionally held power, to the consumers who have traditionally been powerless (Honey 1996). It involves the recognition that people with a mental illness are valued members of society who have influence over all things that affect their lives (Whitmore 1998; Deegan 1997). Different factors hold different significance for each individual, therefore the actions required to achieve consumer empowerment will vary (McLean 1995).
Generally speaking, consumer empowerment within the community involves:
- overcoming stigma and discrimination in daily life whilst accessing employment and health care services;
- allowing consumers to have choice regarding their employment or leisure opportunities and living arrangements;
- increasing self-esteem and sense of self-efficacy among consumers which will in turn increase access to relevant services;
- helping consumers access knowledge, education and training in areas that are of particular relevance to them, or that they hold as personally important; and
- assisting consumers in establishing support networks within their local community.
Consumer empowerment in treatment or service settings involves:
- providing consumers with full information on their treatment options and giving them the right to choose;
- providing consumers with full information on their rights, and identifying complaints mechanisms for reporting infringement upon these rights;
involving consumers in the process of developing, implementing and evaluating services;
- ensuring that all mental health services reflect dignity and respect for consumers;
- involving consumers in training of workers who deliver services to them and their peers;
- developing safeguards to ensure that consumers and carers are safe when involved in
- research, treatment or education activities;
- supporting consumer involvement, by providing mental health services with the resources and support needed to engage a collaborative approach;
- (Meagher 1996)
- a collaborative treatment approach between consumers and service providers in order to increase compliance with medication and therapeutic interventions;
- ensuring that all health service providers offer equal access for all consumers; and
- introducing community-based services decreasing the consumer's isolation from their chosen community and decreasing institutionalisation.
- (Corrigan 2002)
Consumer empowerment can be conceptualised as a continuum, with one extreme represented by the external events which empower the individual and the other extreme represented by internal events which are a result of and reinforce the empowerment process.
The external element of empowerment involves the points listed above. The personal element of empowerment involves the development of self-confidence, personal growth, and the ability to make changes or life decisions. All of these external and internal events combine to generate and reinforce empowerment. Indeed, research indicates that the implementation of empowerment strategies leads to increased self-determination, self-worth, human dignity, rehabilitation and recovery in mental health consumers (Honey 1996).
Essentially, empowered consumers are people who have the opportunity for control in their personal lives, have information and knowledge, are able to make choices about their own treatment, and are able (with support) to experiment with their treatment. Empowered consumers can also contribute to government policy development and the management of mental health services, non-government organisations, and peer organisations (Meagher, 1996).
Evidence for the benefits of consumer empowerment
The aim of treatment programs provided by mental health services is to decrease the presence of symptoms in consumers. The recent guidelines for treatment of psychiatric symptoms is for a collaborative approach between consumers and service providers, which will subsequently produce increased benefits for consumers from their treatments and be more successful in managing symptoms (Corrigan 2002).
The collaboration between consumers and their service providers needs to be one of respect, not dominance and should emphasis the optimistic outcome of recovery, rather than a poor prognosis.
Collaborative approaches ensure that a program is tailored towards the individual's needs and increase their involvement in treatment decisions. Empowerment also means that consumers feel they are not being coerced into taking medication, increasing the likelihood of compliance. Compliance is also becoming an issue of the relationship between the service provider and consumer, rather than stemming directly from the consumer's resistance.
Empowerment of consumers has been linked to improved use of medication and rehabilitation services. Consumers are also more likely to have increased feelings of self-efficacy which encourages them to access vocational skills training, work and independent living arrangements empowerment of consumers may also result in change within the community. If mental illness can be associated with recovery then stigma and discrimination can be reduced and society will be more willing to set up opportunities for access to work and independent living (Corrigan 2002).
Barriers to consumer empowerment
The dominance of a paternalistic treatment model
In a health care environment where a paternalistic treatment model in which consumers are seen solely as patients in need of treatment is dominant, consumers remain powerless. Staff roles can reinforce negative attitudes towards consumers and the powerlessness of consumers, rather than seeing consumers as whole people with strengths and abilities to participate in their own recovery.
Many consumers feel they are coerced into interventions and forced to comply with the treatment regimens set out by health professionals (Corrigan 2002).
The dominance of a narrow paternalistic treatment model has contributed to negative views of consumers and a power differential between staff and consumers and low staff expectations from consumers. Consumers can be placed in a passive role in relation to 'expert professionals'. Staff who do not acknowledge the expertise of consumers in mental health may have difficulty in adjusting to the changing power structures between consumers and service providers.
Also, studies have shown that health professionals also have similar stereotypes about mental illness to the general community (Mirabi, Weinman, Magnetti et al 1985).
Stigma and the negative attitudes of society towards people with mental illness can be a major barrier. The effects of stigma can mean that some consumers may be lacking in self-confidence which can restrict their ability to participate. Some consumers may need support, encouragement and training to express their views.
Stigma promotes the idea that people with a mental illness are not capable of living independently. This can produce feelings of fear and exclusion, authority over and benevolence towards people with a mental illness (Brockington, Hall, Levings et al 1993; Taylor, Dear 1980), rather than respecting and treating them as individuals. Communities promoting stigma will fail to provide the rights and opportunities that all humans are entitled to (Corrigan 2002) such as their choice of vocation, neighbourhood and friends.
Individuals with a mental illness are also affected by self-stigma, which is where the individual questions their own ability to live independently and participate in their chosen activities of daily living. This results in lowered self-esteem and consequently reduced interest in accessing work or independent living skills resources. Self-stigma is often a direct result of stigma produced by society (Corrigan 2002).
Barriers to making a complaint
Consumers may be reluctant to speak out for fear that it will jeopardise their access to health care. Complaint processes may not be clear or explicit. Further, consumers may not know their rights and therefore do not know if they have been infringed.
Lack of support
Lack of support or isolation may be experienced by individual consumers or as sole representatives on committees. Some consumers may not have the supports in place to assist them as active participants on committees due to social isolation, or lack of access to information about the consumer network.
Lack of experience in participation
Some consumers may not have had experience of committees or organisational structures and may need training in meeting procedures, committee structures, etc.
Lack of information
This includes: lack of information about rights, complaint and accountability mechanisms; treatment options and policy issues. Information may also be inaccessible due to the use of jargon or presented in an inappropriate language.
These include lack of transport for some consumers to attend meetings, costs of participating and meeting times being unsuitable (e.g. running late into the evening).
Barriers for service providers
Participation can be perceived as time-consuming, involving up-front expenditure and a change in the relationship between consumers and staff.
This involves the gesture of involving consumers without the infrastructure in place to facilitate their involvement. It can be illustrated by the number of consumers represented, the level of their responsibility, how payment for the service is handled and the role and function that is expected of them.
(Adapted from Central Sydney Area Health Service; Consumer Participation Policy 1996)
In addition to the general barriers which may be faced by all consumers, some people may face other or extra barriers because of gender, sexuality or culture. These barriers need to be identified and strategies developed to address them.
Policy support for consumer empowerment
Geller et al. (1998) conducted a comprehensive survey of all the states in the USA to determine policies on consumer involvement and employment of consumers in mental health services. Only 16% had consumer responsibility in a statute regulation or policy but 48% had paid positions for consumers in state offices. The data showed that consumer empowerment had gained momentum in the mid to late 1990s but that there was a need for a greater commitment nation-wide.
In Australia consumer participation is a key element of mental health policy at a national, state and area health service level. The Mental Health Statement of Rights was endorsed at the Australian Health Ministers' conference in March 1991, and a Charter for Mental Health Care in NSW has also been developed which consolidates these rights (NSW Health Department 1998a).
In the Second National Health Plan (1998), developing partnerships is one of three priority areas for reform. It states: The main challenge in service reform and delivery is to achieve an appropriate and co-ordinated system of care that meets the needs of individual consumers across the life span. To achieve this, consumers should have a key role in planning and evaluating the services they use and must be able to influence the way in which their service needs are met.' (p.16).
Strategies to increase consumer empowerment
Strategies for empowerment at an individual level
Involving consumers in their own treatment decisions and management plans has an empowering effect (Champ 1998). Empowerment at an individual level is promoted by:
- developing a working partnership based on mutual respect, trust and shared responsibility between the consumer, carers and mental health professional from the earliest phase of service;
- actively involving people with a mental illness and their carers in the development of the Individual Service Plan;
- seeking ways to involve consumers even when they are unresponsive;
- writing the Individual Service Plan in an accessible way which is easily understood by the consumer and their family or carers;
- providing comprehensive and appropriate education to consumers and carers including information about rights, treatments for mental illness and the range of services available; and
- explaining consumer rights and responsibilities at the earliest possible phase of service in a variety of ways over time until the consumer demonstrates understanding.
Empowerment through service and policy development
Consumers need to be formally and informally involved in the decision-making processes at area, state and commonwealth levels. The importance of consumer participation has been emphasised in the National Standards for Mental Health Services (1996), the Second National Mental Health Plan (1998) and Caring for Mental Health (1998). Strategies need to be in place to ensure the equal and successful participation of consumers (Meagher 1996; NSW Consumer Advisory Group 1996). These can include:
- organisational policy being developed to promote consumer participation;
mental health services practising empowerment philosophies across the whole spectrum of care;
- involving consumers formally in policy development, decision-making processes at all levels of government, service development, as well as evaluation and monitoring of service outcomes;
- addressing factors that have previously hindered full and effective consumer participation. This may include providing information and education about their role, function and rights as consumer representatives or service users and supporting them
- through the provision of resources, such as transport, when necessary;
- promoting consumer networks where consumers are supported by education, skills and remuneration; and
- training mental health professionals in strategies to promote consumer empowerment in both clinical and academic settings. Consumers are involved with training.
Other strategies to promote empowerment
- Participation in service evaluation - incorporating the consumer's perspective on standards for effective services is essential to ensure a relevant and responsive mental health service.
- Employment of consumers - consumers can be employed in services for specific roles (e.g. consumer advocates in hospital settings). Their unique experience allows the quality of services to be improved and increases the empowerment of the individual (for more information on consumer employment services and rehabilitation run by the Schizophrenia Fellowship of NSW, click here.
- Consumer-controlled activities - Peer support and self-help groups can facilitate support, empathy and a sense of collective power (for more information on support groups run by the Schizophrenia Fellowship of NSW, click here). Consumer-controlled activities also include clubhouses, housing projects, consumer-run businesses, public education and advocacy efforts, and development of resource materials and training programs (by consumers) for the community.
For a list of references for this quality of life section on empowerment, click here.
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