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ACACIA works together with ACT consumers and carers to conduct research on the issues that are most important to the ACT consumer and carer community. Our core work is funded by a contract with ACT Health, and we also apply for competitive funding to extend its scope. View a paper describing our work in practice.
Read more about ACACIA’s current and past research projects below. If you are interested in further information of any of the projects, please email us at acacia@anu.edu.au.
Current research projects
Consumer and carer research priorities
Significant progress continues to be made against the research agenda developed by consumers and carers in 2013 and 2017. A total of 31 of the 92 topics have been addressed by ACACIA research, with a further 11 addressed in projects in which ACACIA researchers and students are involved. In total, these 42 topics are in 12 of the 15 broad areas. ACACIA is building a particularly strong reputation for lived experience-led research into peer work, and mental health services.
In 2022, ACACIA partnered with the ALIVE National Centre for Mental Health Research Translation in leading a national survey. Responses were received from 365 people from around Australia and the data will inform national mental health research from lived experience perspectives. Work from the survey and a massive online co-design project, which included the ACACIA Advisory Group in early co-design, is influencing Australian mental health research directions more broadly. This gives many years of ACACIA work a national presence and influence.
The ANU-ALIVE National Lived-experience priorities survey will be run again in 2024, with a focus on the views of young people aged 16-25, who have lived experience of mental ill-health either personally, or as a carer, family or kinship group member supporting someone with mental ill-health.
Like to take part in the 2024 Lived-Experience priorities survey?
Research priorities progress poster (PDF, 438KB)
Peer-reviewed journal article: Consumer and carer research priorities (PDF, 621KB)
Peer-reviewed journal article: Keeping the agenda current
Peer-reviewed journal article: Innovative methods to identify research priorities
What we call ourselves
What we call ourselves is embedded within the ACACIA Internship Program. The study addresses the two main language topics from the ACACIA priority agenda, investigating how language can be used to include and exclude, and the influence of labels. A total of 15 interviews have been conducted with consumers and carers from around Australia, and the data are currently being analysed by the ACACIA interns with mentoring from other ACACIA researchers. The whole ACACIA team will collaborate on a peer-reviewed paper from the study.
Evaluation of community-led safe spaces
As a result of the successful ongoing partnership for the Co-Creating Safe Spaces project, Roses in the Ocean approached Prof Banfield and Dr Fitzpatrick to lead an evaluation of the 15 community-led safe spaces being trialled under their auspices. The project will draw heavily on the co-creation already conducted for the Co-Creating Safe Spaces project, but will particularly focus on the implementation and sustainability issues unique to the volunteer-led model.
Co-Creating Safe Spaces
The Co-Creating Safe Spaces project was funded in 2021 by Suicide Prevention Australia, and includes five current and past ACACIA researchers. The project aims to evaluate the implementation and outcomes of six safe spaces in three Australian jurisdictions: ACT, NSW and SA. The project has a strong focus on meaningful outcomes for safe space guests (beyond reduction of distress), the implementation of suicide prevention peer worker roles, and the integration of non-clinical services into mental health and suicide prevention services. A secondary aim is to develop and publish research co-creation methods.
More information is available on the study’s website.
Peer-reviewed journal article: Study protocol
Peer-reviewed journal article: Co-ideation and co-design
New mental health 'Safe Haven' to bring relief to those suffering from emotional distress - ABC News
The Australian National COVID-19 Mental Health, Behaviour and Risk Communication Survey (published and in progress)
This study aims to improve understanding of the mental health and behavioural impacts of COVID-19 on the Australian community, and is run in collaboration with a team of researchers from both the Research School of Psychology and Research School of Population Health at the ANU. More information is available on the study's website.
ACACIA is conducting several research projects using data collected in the Australian National COVID-19 Mental Health, Behaviour and Risk Communication Survey:
Exploring personal experiences of the COVID-19 pandemic in Australia
The COVID-19 pandemic has impacted people across Australia in a variety of different ways. This study will explore people’s personal experiences of the pandemic, as described in their own words. We aim to gain a richer understanding of how the event has impacted people, in both positive and negative ways, and whether these impacts and experiences change over time.
Psychotherapy using practical techniques and their effects on depression and anxiety symptoms during the COVID-19 pandemic
Several studies have now shown an increase in symptoms of depression and anxiety in the community during the COVID-10 pandemic. However, little research has looked at what factors may be protective of people’s mental health during this time. The aim of this study is to examine whether practising specific psychological strategies for improving mental health (e.g.., mindfulness, exercise, challenging dysfunctional thoughts) can improve mental health during the COVID-19 pandemic in Australia.
Peer-reviewed journal article: Strategies for improving mental health
Pet ownership and mental health during the COVID-19 pandemic
The effects of pet ownership on people’s mental health has been the subject of tremendous interest during the COVID-19 pandemic, as people sought comfort and company from furry, feathered and finned friends. However, the body of research on the subject is quite small and few studies are able to track the effects over time. This study will look at whether owning a pet, and the things we do with our pets, affects mental health and loneliness over a 3-month period during the COVID-19 pandemic.
Project overview (PDF, 1.06MB)
Ableism and the COVID-19 pandemic
As the pandemic evolved, public messaging changed to encourage individuals to be responsible for their own safety and health. The focus on restarting the economy and the relaxing of restrictions had worrying consequences for people with significant mental and physical health problems, disability, or other risks. These people are forced to restrict their own activities to minimise risk. The 2022 follow-up survey included questions exploring people's attitudes towards risks and responsibility for public health, to investigate ableism.
Past research projects
Experiences surrounding the suicide of a family member in the ACT
For people who are at risk of suicide and those who support them, a fragmented and confusing system may limit access to appropriate services. This project investigated the experiences of family, carers, and community members impacted by a suicide death in the Australian Capital Territory, Australia. We identified barriers and facilitators to care, as a way of informing and improving strategies for the effective management and care of people experiencing suicidal distress, their families, and carers.
Peer-reviewed journal article: Suicide prevention barriers
Better Together: Implementation of a peer worker-led mental health recovery program
The integration of peer workers into the current Australian mental health system has significant capacity to address severe workforce shortages, improve recovery outcomes, and meet the growing demand for people with lived experience to support consumer recovery. This project involved detailed analyses of the mechanisms underpinning the establishment and sustainability of peer work roles. The use of an implementation science theoretical model, coupled with participatory research methods was an innovative and rigorous approach that developed strong, evidence-based recommendations for mental health system development in Australia.
Peer-reviewed journal article: Community awareness and perceptions of the peer workforce
Peer-reviewed journal article: Supported transition from hospital to home
Understanding Participation: Measuring the value and impact of consumer and carer voices in services and policy
Are consumer and carer voices being heard and integrated at the level of health policy and services? And how are they valued by the people who are listening? The thoughts, insights and experiences of consumers, carers, service providers and policy makers can help develop our understanding of how lived experience participation is valued in the health sector, and of what “value” means from different perspectives. Understanding Participation was a consumer-led research project conducted by ACACIA in partnership with representatives from Health Care Consumers’ Association, The ACT Mental Health Consumer Network, Carers ACT, the ACT Health Directorate and Canberra Health Services, and independent consumer and carer representatives. Our project aimed to understand the current nature of consumer and carer participation in the Australian Capital Territory and to explore the concept and meaning of value in the context of lived experience participation. Our long-term goal is to co-create a set of consumer- and carer-developed principles for participation, value and impact.
Evaluation of Mental Illness Education ACT (MIEACT) programs
Mental Illness Education ACT (MIEACT) is the Australian Capital Territory’s primary mental health and well-being education and training provider. They run various educational programs in schools, communities and workplaces across the Canberra region and surrounding area. These programs combine lived experience stories of mental illness with evidence-based content to promote early intervention, reduce stigma and emphasise recovery. ACACIA conducted an external process and impact evaluation of MIEACT programs, to validate and complement the internal evaluation activities conducted according to the MIEACT Evaluation Framework.
Cancer survivors
This small study was conducted by Dr Amelia Gulliver in 2021-22, with the aim to investigate the health and mental health care experiences and needs of cancer survivors in Australia, using an online survey with closed- and open-ended questions. The study showed that the main issues for cancer survivors were access to and management of services for both their physical and mental health, with some clear inequities.
Peer-reviewed journal article: Navigating the Australian health care system
Music Engagement Program evaluation
The Music Engagement Program (MEP) is a specialised, established program developed by leading researchers at the ANU School of Music, targeted at increasing engagement and participation in the act of making music. ACACIA worked with Dr Georgia Pike from the MEP to deliver and evaluate the program within a residential aged-care centre in the ACT.
Project overview (PDF, 2.26MB)
Peer-reviewed journal article: MEP trail outcomes for people with Alzheimer’s and dementia
Peer-led e-mental health
There is an increasing need for peer-workers (people with lived experience of mental health problems who are able to support others in their recovery) to work alongside consumers to improve outcomes and recovery. In addition, new forms of technology, particularly tablet and mobile applications, can be used to deliver services in an engaging and innovative way. Enabling and supporting peer-workers to assist in mental health care has important implications for enhancing mental health recovery. This exploratory proof-of-concept study aimed to determine if a peer worker led e-mental health recovery program is a feasible, acceptable and effective adjunct to usual care for people with moderate to severe mental illness. Consumers and health service staff were very positive about the peer worker and the role such a position could play in recovery, separate from clinical care.
Plain language protocol (PDF, 571KB)
Preliminary findings (PDF, 594KB)
Peer-reviewed journal article: pilot trial
Consumer and carer priorities for research (ACACIA core funding)
In a one-day forum held in 2013, ACT consumers and carers developed and prioritised ideas for ACACIA's research agenda and suggested methods for effective active involvement in the research process. Trauma-informed care, peer work and recovery were key areas of interest for research. Participants were also interested in face-to-face research and mentoring of non-academic researchers on quality participatory research. In 2017, a national consumer and carer survey was conducted to “check-in” with consumer and carer priorities for research. Participants were asked to rate the priority of the topics developed at the forum and suggest new ideas for research. A wide variety of research topics were considered “high-priority” by participants, and clear top priorities could not be identified.
Peer-reviewed journal article (PDF, 621MB)
Whose story is it?
National ethical guidelines governing the inclusion of consumers in mental health research exist, but barriers to research can arise when they are implemented at the local level. Specific national ethics guidelines for research involving carers or consumer-carer relationships are not available. This study was a social science investigation of mental health consumer and carer perspectives on mental health research ethics procedures.
Conducting research involving carers and consumer-carer relationships raises potential concerns related to story ownership, privacy and confidentiality. Potential risks to the privacy of non-participants and of social harm to participants’ relationships could be resolved through communication between researchers and participants, and within relationships. In these circumstances, researchers may need to facilitate the negotiation of information-sharing boundaries within relationships and the safe and confidential telling of shared stories.
Conducting research involving mental health consumers and carers raises ethical issues related to privacy, confidentiality, and respectful risk management. Current Australian ethics procedures, particularly group-based definitions of vulnerability to harm, are perceived as stigmatising by consumers and carers and may unjustly exclude certain populations from the benefits of mental health research. Future research should aim to support the development of more nuanced approaches to the ethical review of mental health research that do not automatically assume risk on the basis of diagnosis.
Peer-reviewed journal article: Consumer and carer views on carer research participation
Peer-reviewed journal article: Consumer and carer views on research ethics
Partners in Recovery evaluation
The Partners in Recovery (PIR) program aimed to help people with long-term mental illness to develop their own recovery plan. It also helped people to access services and supports. In 2014, ACACIA developed an evaluation framework for the PIR program in consultation with consumers, carers and other key stakeholders. The evaluation framework was implemented in 2015 and data collection was completed in 2016. The evaluation found that PIR significantly improved participants’ quality of life, social inclusion, perceptions of recovery, and confidence in the health system. Support Facilitators (care coordinators) were central to the impacts of the program experienced by clients and their carers.
Plain language summary (PDF, 1.5MB)
Evaluation framework (PDF, 619KB)
Peer-reviewed journal article: Participant outcomes
Peer-reviewed journal article: Care co-ordination findings
Finding the path: Service access and navigation for serious mental illness in a complex Australian policy landscape
The objective of the Finding the Path project was to inform health system change to ensure people with serious mental illness can access quality services. Improved access to quality mental health services has been a key target in Australian health policy for over 20 years. However, people with mental illness continue to report problems accessing and navigating the complex service system. Finding the Path studied consumers' mental health service experiences using policy, qualitative, quantitative and geographic analysis to identify systemic problems. Mental health consumers and service providers were actively involved in developing final recommendations for policy to ensure system change reflects their knowledge.
Recommendations from a thought leaders’ forum (PDF, 481KB)
Peer-reviewed journal article: Access to general practice findings
Peer-reviewed journal article: Mental health care planning in general practice
