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Commentary on consumer and carer participation in a national mental health promotion initiative
Abstract
Current Australian Government policy acknowledges that consumers and carers are an integral component of improving all aspects of mental health, from individual service provision to policy development. However, although the ability of consumers and carers to influence mental health programs and services in Australia has increased over the past decade, the theory of partnership for consumer and carer participation has many challenges when put into practice. The Children of Parents with a Mental Illness (COPMI) national initiative has endeavoured to overcome these challenges and integrate consumer and carer participation across the initiative through a range of strategies. This paper explores and describes how consumers and carers have engaged with the initiative and overcome barriers or worked through ways to negotiate them. Examples and consumer and carer reflections are provided specifically in relation to the development of both public information and workforce development resources. The COPMI national initiative's experience adds to the body of knowledge that is increasing as consumer and carer participation becomes more integrated across the mental health sector.
... This initial and critical stance ensures that consumers' concerns, experiences and aspirations are heard, valued and arguably most importantly, acted on. While intuitively most would agree with this premise, unfortunately, with few exceptions (Alliston, Kluge & Fudge, 2009), the consumer's voice is little heard and rarely acted upon. Rather than passive recipients of care, we need to establish systems and procedures that facilitate opportunities for consumers to actively participate in their health care. ...
... As the founding editor, his vision was to create a journal that would be academically rigorous and at the same time appealing to practitioners. Under Professor Martin's stewardship, the journal went from being the Australian e-Journal for the Advancement of Mental Health (2002-2009 to the internationally positioned, Advances in Mental Health: Promotion, Prevention and Early Intervention (2010-current). The large readership of the journal is testimony to the realization of this vision which has resulted in a dynamic, international journal, relevant to both researchers and practitioners, and for that I commend and thank him. ...
... Further challenges associated with consumer and carer collaborative research include having sufficient time (and money) to enable mutual respect and trust to develop, and ensure the viability of the project (Alliston et al. 2009;Horsfall et al. 2007;Lloyd & King 2003;Wells & Jones 2009), clarity of planning and processes, and having a supportive organizational culture (Alliston et al. 2009;Horsfall et al. 2007). In the C&C Experience Project, there was no guarantee of funding beyond the first year, which was a cause for uncertainty for the two project teams; however, funding was extended to enable the completion of the project. ...
... Further challenges associated with consumer and carer collaborative research include having sufficient time (and money) to enable mutual respect and trust to develop, and ensure the viability of the project (Alliston et al. 2009;Horsfall et al. 2007;Lloyd & King 2003;Wells & Jones 2009), clarity of planning and processes, and having a supportive organizational culture (Alliston et al. 2009;Horsfall et al. 2007). In the C&C Experience Project, there was no guarantee of funding beyond the first year, which was a cause for uncertainty for the two project teams; however, funding was extended to enable the completion of the project. ...
A successful working partnership in research between a consumer project team from the Victorian Mental Illness Awareness Council and a carer project team from the Victorian Mental Health Carers Network was forged during their collaborative involvement in an innovative 2-year pilot project funded by the Victorian Government of Australia. This project trialled new ways of capturing consumer and carer experiences of mental health services, and that feedback was integrated into service quality improvement. Towards the end of the project, an external facilitator was used to enable the two teams to reflect on their experience of working together so that their joint story could be shared with others and used to promote further use of this approach in the mental health field. Main findings included the importance of having strong support and belief at leadership levels, opportunities to build the relationship and develop mutual trust and respect, a common vision and a clearly articulated set of values, targeted training appropriate to the needs of the team members, independent work bases, and mutual support to overcome challenges encountered during the project. The experience forged a close working relationship between the two teams and has set the scene for further participation of consumers and carers in research and innovative quality-improvement processes in the mental health field.
... [Children of Parents with a Mental Illness;Alliston, Kluge, & Fudge, 2009]are not represented in this study; only one such participant took part). Different family member attitudes can also increase friction and stress; " we separated[husband], because all his Dad wanted to do was belt it[depression]out of him[consumer child]. ...
In 2010–2011, a qualitative focus group study was commissioned by Australia’s beyondblue to explore the needs and experiences of consumers and carers of mental illness. Overall, it was found that their ‘stories’ are substantially different from one another, leading to high stigma within families. The aim of this article is to discuss these phenomena more deeply. In summary, the pervasive stigma associated with mental illness in society affects: people from gaining in-depth knowledge about it and therefore capacity to recognize symptoms early and provide the necessary empathy required; the capacity of health professionals to provide holistic treatment and not simply rely on a ‘medical model’; and the provision of adequate funding to ensure the formal mental health system has appropriate infrastructure to meet consumers’ needs. Stigma essentially hides mental illness from the community, placing pressure on families to provide support instead who may lack the expert knowledge that clinical consumers require. The ongoing and stressful nature of caring can cause carers to develop stigmatic attitudes and behaviors. These are intensified with misperceptions about consumers’ control over their mental illness, unequal distributions of attention within the household, and low consumer insight into the carer experience. It can also lead to the development of their own trauma that requires formal help. To address these complex issues, stigma is the foremost issue in need of redress. It can help reduce barriers to help-seeking in both consumers and carers, and ensure the provision of an informed and well-resourced ‘mental health response’ for families.
... In fact, the current Australian Government policy states that consumers and carers must be involved in the mental health reforms. Their active involvement includes planning, implementation and evaluation of mental health services reforms (Alliston, Kluge, & Fudge, 2009). ...
Mental health is a critical issue in Indonesia, since its population ranks among the top five in the world and the prevalence of common mental disorders is 11.6% of the adult population. However, the need to build an effective mental health-care system that is accessible to the whole population has only been recently addressed. The Aceh tsunami in 2004 brought to the forefront an unexpected window of opportunity to build a mental health-care system. Integration of mental health care into primary health care is a key strategy to close the treatment gap for people with mental disorders. Existing integration of psychologists into primary health care is a big step to meet the shortage of mental health-care specialists. As primary mental health care is an emerging field, the perspectives of Indonesian experts on Indonesian mental health care are needed to develop a curriculum for training psychologists to work in primary health care. In this study, data have been collected through semi-structured interviews with 24 Indonesian mental health experts, and three focus group discussions with 26 psychologists. Overall, experts agreed that to be able to work in primary health-care psychologists should have roles and training ranging from clinical to advocacy skills. Participants also agreed that psychologists should work in the community and contribute to primary health care as service providers and that strong collaborations between psychologists and other primary health-care providers are the key; these can be developed partly through referral and by respecting each other's unique strengths.
In Indonesia there is a pressing need to scale up mental health services due to a substantial
unmet need for mental health care. Integrating psychologists into primary health care can
potentially deliver affordable mental health services to communities and help to close the
treatment gap. Australia is one of the pioneers in integrating mental health into primary
health care, and the mental health reforms in Australia may have some implications for
Indonesia. The aim of this paper is to examine the Australian experience and to reflect in
particular on lessons that may be learnt to inform the development of curriculum for
psychologists working in primary health care in Indonesia. Data were collected through
semi-structured interviews with 12 Australian experts in primary mental health care. The
focus of the interview was on the roles and skills of psychologists working in primary
health care with a particular focus on the appropriate curriculum for psychologists. Overall,
the Australian experts agreed that psychologists’ roles and training should include both
clinical skills and public mental health skills. The experts also agreed that psychologists
should be able to educate the community about mental health issues and be capable of
undertaking research and evaluation of programs. A central theme was the need for strong
collaborations with general practitioners and existing agencies in the community so that
psychologists are able to make appropriate referrals and also accept referrals. The lessons
learnt from the Australian experience, which are most applicable to the Indonesian setting
are: (1) the importance of adequate government funding of psychologists; (2) the value of
evidence-based treatments such as Cognitive Behavioural Therapy; (3) the need to
specifically train psychologists for primary care; (4) the need for flexibility in the
psychologist workforce (e.g. location); and (5) the value of continuing supervision for
psychologists to support them in their role.
Objective: Over the last decade Australia has established and endorsed sound policy and strategy documents under the National Mental Health Strategy. However, the enactment of proposed levels of consumer involvement in effective and respectful ways is yet to be fully witnessed in reality. This issue requires sustained attention where barriers need to be named and understood in order to move forward and build on past successes. This paper addresses this issue and offers some responses to the following question: What does a commitment to enacting consumer involvement mean for mental health promotion practice? Conclusions: Despite progress, consumer involvement in mental health promotion work, like the mental health field in general, is yet to reflect national visions. Barriers include: structural issues and insufficient education and training to support workers putting policy into practice; lack of clarity about who is a consumer; the many difficulties consumers face in progressing mental health consumer agendas; and disagreement on how consumers understand what constitutes 'mental health.' In order to embody proposed commitments attention must be paid to: the process of engagement, dialogue and liaison with consumers; advocating and facilitating active involvement; an understanding of partnership accountability; and active engagement with rigorous evaluative processes.
Given the needs of families where a parent has a mental illness, it is essential that workers are provided with effective training in order better to support such families, particularly children. Previous research has suggested that workforce training might focus on worker attitude, skill and knowledge, as well as inter-agency collaboration. A review of current training packages revealed common themes, with family-centred practice considered important. Barriers and issues for workers implementing family-sensitive practice were also identified. This study sought to develop a sound theory and evidence base for workforce training components. A web-based Delphi study was used to obtain consensus on the content of a training resource for mental health practitioners supporting families experiencing parental mental illness. Fourteen experts, including consumers and carers, responded to questions about curriculum content. Suggested topics were translated into seven themes which were then refined to create the final broad content for the training resource modules. A clear structure for the development of future workforce training packages is suggested. The results are discussed in light of previous literature and existing training packages.
This Australian study provides insight into the meaning that former consumers involved in the education and training of mental health staff attributed to their role.
Interviews were conducted with 11 consumer educators and were analysed using a qualitative phenomenological approach.
Five themes emerged from the interviews including: giving of self; tokenism; learned versus lived experience; voyeurism; and lack of clear expectations.
The findings highlight the need for ongoing critical review of the way in which consumer educators are engaged in the education and training of mental health professionals.
The field of men’s health has grown markedly over the past few decades. Increased activity specifically relating to men’s
health promotion in both Australia and the UK has been noted during this period. There has, however, been a reticence to critically
examine men’s health promotion work within a broader discourse relating to gender and gender relations. Indeed, the vast majority
of health-related gender discussion to date has been focused on women’s health experiences and their health practices. In
this paper, we argue that grounding men’s health within this broad gender discourse is important for building an evidence
base in, and advancing, men’s health promotion work at a range of levels. We specifically explore the research, practice and
policy contexts relating to men’s health in Australia and the UK, and describe the facilitators for, and barriers to, promoting
men’s health. We conclude by suggesting that a critical gender lens ought to be applied to current men’s health promotion
work and provide strategies for researchers, practitioners and policy makers to move towards this new frontier.
To describe the methods used for involving consumers in a needs-led health research programme, and to discuss facilitators, barriers and goals.
In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self-help and patients' representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one-to-one support and discussion. A reflective approach included interviews with consumers, co-ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors.
When seeking research topics, face-to-face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme.
Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co-ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.
Increasingly, Australian government policy advances an expectation that consumer and carer participation will be present in all aspects of mental health service delivery. A review of the literature suggests that consumers and carers actively seek the opportunity to participate but are frequently hampered by barriers. However, government policy documents tend to discuss consumers and carers with regards to participation as though their needs and desires are essentially similar. This paper presents the findings of a qualitative research project involving in-depth interviews with carers and mental health nurses. The issue of conflict between the issues for consumers and carers emerged as a major theme. This issue is explored and discussed in light of the goals of current mental health policy. It is concluded that conflicting agendas are apparent and must be addressed if genuine participation in service delivery is possible for both consumers and carers.
Young people with mental illness face many barriers in accessing care and often have different needs to those of adult consumers. Young people's participation in mental health services is one way of addressing quality and access issues, through receiving feedback and implementing youth-driven and youth-friendly strategies. headspace, the National Youth Mental Health Foundation, established in July 2006, highlights the mental health care sector's commitment to young people. Existing youth participation programs provide examples of what can be achieved at national and local levels and with varying levels of financial and other support. These include: Ybblue, the youth program of beyondblue; Reach Out!, a web-based service; Headroom, providing health promotion and a website; and Platform Team (ORYGEN Youth Health), comprising current and past clients who advise the service and provide peer support. Current practice in youth participation in mental health services involves a variety of methods, such as ensuring information and education is appropriate for a youth audience, and participating in peer-support programs and staff selection panels. Challenges in the future development of youth participation in mental health services include avoiding tokenism, acknowledging that young people are not a uniform group, translating national strategies into local improvements in services, and gaining the support and cooperation of health care workers in genuine participation.
Without evidence, clinicians may inadvertently be providing treatment that is not necessarily best for some consumers. If consumers, carers, and staff have different views about what type of services are best and which treatments are most effective, it is in all our interests to know more about these differences and find common ground. This article provides an overview of factors that require consideration and action for collaborative research to be successful. Actively involving consumers and carers in mental health research may improve the quality of research and has the potential to enhance clinical outcomes. However, a range of challenges must be overcome, which include insufficient training, extra time requirements, stress and non-representativeness, and the impact on research projects, consumers, and researchers. These factors apply equally to carers and, arguably, staff. With sufficient motivation, commitment, and funds for the requisite time, all of these disadvantages could be overcome or at least minimized.
The purpose of this study was to assess mental health clinicians' attitudes about mental health consumer participation in inpatient psychiatric units. A cross-sectional survey design was used with a non-probability sample of 47 clinicians in the psychiatric units of a large Australian hospital. The results showed that gender, length of time as a clinician, and how long the staff worked in the units influenced their attitudes about consumer involvement. Females were more likely than males to support consumer participation in management and consumer consultants. Less experienced staff showed greater support than more experienced staff for mental health consumer involvement in treatment-related matters and consumer consultants in units. New staff members were more likely to register agreement-to-uncertainty regarding consumer involvement in treatment-related issues, whereas established staff members were more likely to record uncertainty about this issue. The findings showed that although reports and policies promoted participation, some clinicians were reluctant to accept consumer and consultant involvement.
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