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A Z I N E F O R M E N T A L H E A L T H R E S E A R C H T R A N S L A T I O NWinter - SpringQ2Lost in TRANSLATIONThis edition’s front cover is an original digital artwork that has been drawn by MuruworiGumbaynggirr Aboriginal Co-Design Lead Phillip Orcher.
Lost in Translation ZINE Q2 Winter to Spring 2024Cover Image by Muruwori Gumbaynggirr Co-Design Lead Phillip Orcher.Title: VernalisationDescription: Blue represents the cold frozen structures ofsystems and the gold is reflecting the un-freezing of goodpractice with hints of pinks and green symbolic of theemergence of life and change. Editor:Kate Fowler editor-alivezine@unimelb.edu.auFeature Contributors:Billy Sung, Joanna Lin, Pip Brennan, Carli Sheers The CURTIN CREST TeamInformation Sharing:info-alivezine@unimelb.edu.auSubmissions:Contact the editor to discuss editor-alivezine@unimelb.edu.auVisual Assets:Philip OrcherDennis GoldingCaroline TjungPublished quarterly by The ALIVE National Centre for Mental Health Research TranslationThe University of MelbourneParkville VIC 30522The ALIVE National Centre for Mental Health ResearchTranslation is funded by the National Health and MedicalResearch Council (NHMRC) Special Initiative in MentalHealth GNT2002047 Flagship research projects receivefunding from the Medical Research Futures Fund andMedibank Better Health Foundation.
Original digital Centre artwork by Kamilaroi/Gamilaraay artistDennis Golding “Healing from the Ground” WINTER - SPRING 2024We acknowledge the Traditional Custodians of Countrythroughout Australia and recognise their continuingconnection to land, waters and sky. We pay ourrespects to Elders past and present. 3
CONTENTS4An introduction from ourCentre Co-Directors.Welcome06Meet the people behind thisissue's feature articles.FeatureContributors07Experts agree, for research tobe truly effective consumersand community membersshould always be activelyincluded. Find out about thenew Curtin CREST Programand why it is so successful.THE CURTIN CRESTPROGRAM08Everyone is entitled to carebut inequalities do impacton access and opportunityfor this. Read about thenew MRFF funded flagshipto address this inequality.NEW FLAGSHIP FUNDED12
5IN EVERY ISSUENetwork Update 24Roadmap Update22ResearchOpportunities26Want to make adifference to mentalhealth policy andcontribute to importantresearch in the mentalhealth space? Find outabout the latestresearch opportunitieshere.Engagement Update20Read about our recentliterature review thatoutlined how youngcarers needs and theimpacts of caring can beoverlooked ingovernment policiesand support programsand see our new lookQuick Guides. HIDDEN BURDEN OFYOUNG CARERS16Calendar27An award winning film israising awareness of thetrauma experienced byForgotten Australiansduring their childhoodand how this impacts ondecisions to enter agedcare and points to gapsin design of services. “I’D RATHER DIETHAN BE IN AGEDCARE”18 A brief review of thepanel conversation withMark Cross, Alicia Kingand Angela Martinfacilitated by Josh ReidJones on how mentalhealth needs to beprioritised in theworkplaceWORLD MENTALHEALTH DAY15
Dear Readers, Welcome to the retrospective Winter to Spring Issue of Lost inTranslation. We are glad of the golden sun arriving to thawsome of those frozen systems portrayed in Phillip Orcher’s frontcover piece. In this issue, we take a look at the Curtin Crest Program, whichprovides training and education on matters related to healthand medical research for consumers and communitymembers. This important program provides people with theopportunity to be directly involved in the development,implementation and review of policies, procedures andsystems that impact them. We encourage you to take a look.We celebrate the announcement of the “Whose care is leftbehind”, a new five-year flagship in the National Centre fundedby the Million Minds Mental Health Research Mission. Workingacross 25+ sites, this is a project that will grow action nodes thatdevelop multilevel collective strategies to address inequalitiesdisproportionately impacting on priority populations . As we near the end of World Mental Health Month we brieflyrecap on our panel discussion held on October 10th and followthe week that was focused on celebrating carers, we alsooverview a review that has identified more absences inavailable supportive programs for young carers.As always, we remain committed to promoting open dialogue,reducing stigma and empowering our readers with theknowledge about what’s happening in mental health researchand translation. Read with purpose.6WELCOME Victoria J Palmer, Michelle Banfield& Sandra Eades (AO)
Led by Professor Billy Sung andProfessor Bronwyn Myers-Franchi,Curtin CREST is a project teamconsisting of internationallyrecognised and award-winningresearchers and educators fromCurtin enAble Institute and theConsumer Research Lab at CurtinUniversity. The team is comprisedof subject matter experts inhealth, pharmacy, psychology, andbusiness who specialise inconsumer involvement, innovativehealth and medical research,research methodologies as well asresearch processes andgovernance. Curtin CREST is alsosupported by a dedicatedConsumer Advisory Group madeup of eight consumers with lived-experience.BEC MORANResearch Fellow at UNSW BigAnxiety Research Centre. PhDcandidate at UNSW.FEATURE CONTRIBUTORS7CURTIN CREST TEAMAs part of her research, Bec hasdeveloped a map for ‘dignifyingpractice’, which she believes is thenext step on from trauma-informed practice. She has spentmuch of the past two decades asan educator, teaching abouttrauma-informed practice andcomplex trauma. Bec was part of the early days ofthe social movement thatcampaigned to bring lived-experience engagement to thepublic and professional eye, andhas fought for many years forlived-experience expertise to beusefully and respectfully engagedwith.
8“Nothing about us without us” was the catch cry of thedisability activists in the 1990s and speaks to an enduring,core human rights principle. People need the opportunityto be involved in the development, implementation andreview of policies, procedures, regulations, research,services and systems that impact them on a day-to-daybasis. In health and medical research, people and familiesimpacted by diseases and other health conditions haveboth a keen willingness and motivation to be involved. THE CURTIN CREST PROGRAMBILLY SUNG, JOANNA LIN, PIP BRENNAN, CARLI SHEERSand the CURTIN CREST TeamAn introduction to the Curtin Consumer-ledResearch Education and Support Training Program
The quality of their lives, or theirloved ones’ lives, are at stake. Noother stakeholder has a highermotivation to be involved andcommitment to see projectsthrough to the end. Theinvolvement of consumers andcommunity members in researchprojects should involve activeinclusion at all stages and at alllevels. This includes informing thedecision on what to research andcan continue all the way throughto how the research and its findings are communicated, andhopefully implemented. Involving consumers in research,particularly through consumer-ledmodels, significantly enhances theprocess and outcomes of healthand medical research. Thisapproach shifts the balance ofpower, empowering consumers touse their lived experiences to shaperesearch questions andmethodologies.By aligning research with theactual needs and priorities ofconsumers, such collaborationmakes research more relevant,ethical, and transparent, buildingcommunity trust and leading toimpactful outcomes. 21Have lived-experience of whatit’s like to have a disease, illnessor health condition.Have knowledge andexperience of living in aparticular community.Provide researchers with analternative ‘real life’ view.Have an interest in turningresearch findings into improvedpolicy and practice and canhelp fast-track the process.Have a right to be involved inthe research process.Help ensure research is relevantto the needs of consumers andcommunity. Consumers and communitymembers:9
Funded by the State Government’sFuture Health Research andInnovation Fund at theDepartment of Health, anddeveloped with significantconsumer involvement and input,Curtin CREST provides training andeducation on matters related tohealth and medical research forconsumers and communitymembers. The training programconsists of 13 weeks of onlinetraining modules and 16 weeks ofpractical research with a Curtinresearch supervisor. It’s a “learn-by-doing” program,starting with modules onconsumer involvement and thebasics of health research. Studentsare then introduced to researchprocesses, design, and operations.After these modules, students takepart in an actual research project,working with a supervisor and delivering a report at the end ofthe course.Following this vision, the WAHealth and Medical ResearchStrategy 2023-2033 aims to“Partner with consumers in allelements of research andtranslation.” The CurtinConsumer-led ResearchEducation and Support TrainingProgram (Curtin CREST) is a keyimplementation piece in this strategy. This has been articulated by theNational Health and MedicalResearch Council and theConsumers Health Forum ofAustralia, who developed andendorsed the Statement onConsumer and CommunityInvolvement in Health andMedical Research (2016) (currentlyunder review) To quote: “Consumers and the communityoffer unique and valuableinsights as research is framed,conducted and translated,helping to ensure researchquality and relevance.”10THE CURTIN CRESTPROGRAMExploreonlinemodules
Curtin CREST is designed anddelivered by a team ofinternationally recognised andaward-winning researchers andeducators from Curtin enAbleInstitute and the ConsumerResearch Lab at Curtin University,with assistance from members fromthe Department of Health, Office ofMedical Research and Innovation. Upon successful completion,program graduates have theopportunity to join a Curtin CRESTalumni community and to have theirlearning recognised as a coursecredit if they pursue selectedgraduate certificates at CurtinUniversity.A Consumer Advisory Group (CurtinCREST CAG) guides the coursedevelopment and various aspects ofthe program. The CAG meetsmonthly, consisting of ten memberswith diverse lived-experience asconsumers and carers. The CAGsupports the development process,offering valuable feedback that hasbeen instrumental in getting thistraining program up and running.The inaugural Curtin CRESTprogram was launched in January2024 with 20 participants making upthe inaugural cohort. Within a fewmonths of commencement,participants were expressing highsatisfaction with feedback ratings of4.34 out of 5. 11PARTICIPANT FEEDBACK“I really appreciated learningfrom a diverse group oflecturers and found thiscontent very helpful.”“I really liked the videos andhave finished this modulefeeling inspired andempowered”.“The videos were veryengaging and helpful”.“The inclusion of a researchproject is an incredibleopportunity for me tocontinue to develop as aconsumer advocate. It’s beenan amazing start on myjourney into post-graduatestudies, to find new ways tokeep on amplifying theconsumer voice in our healthand medical research fields.”
12Whose care is left behind? is an urgently needed newmental health research initiative that seeks to address theinequalities affecting Aboriginal and Torres Strait Islandercommunities, rural, regional and remote communities,people from culturally diverse backgrounds, and peopleliving with mental ill-health and carer, family and kinshipgroups. By creating 25 community action nodes, we aimto grow participatory ecosystems that foster more flexible,placed-based, culturally-led prevention, intervention andresponsive care models. Led by the ALIVE National Centre for Mental HealthResearch Translation, the five-year project is acollaboration between nine universities and seven mentalhealth organisations across 25+ locations. “People from culturally diverse communities or rural andremote locations often experience challenges inaccessibility when seeking and receiving mental health The ALIVE National team and partners were awarded$4 million in a Targeted Research Call to turn the tideon structural inequalities with priority populations.NEW FLAGSHIP FUNDED!
13care,” said Professor VictoriaPalmer, Co-Director of the ALIVENational Centre for Mental HealthResearch Translation (ALIVENational).“Most modern-day mental healthservice models are founded inWestern culture and beliefs. Theyare not always culturallyresponsive or appropriate and canimpact negatively on social andemotional wellbeing. It can also behard for people from prioritypopulations to access the carethey need due to the rigidoperating hours, eligibility criteriaand limited localities.” saidProfessor Sandra Eades, Co-Director of ALIVE National andDeputy Dean, Indigenous, TheUniversity of Melbourne.Recent data has shown thatpriority populations do access newmodels of care such as thoseknown as Medicare MentalHealth Centres (which started asHead to Health) and programssuch as Roses in the Ocean’sCommunity-led Safe Spaces orEdith Cowan University’s TheLiving Room. These are all flexible,walk-in models that provideimmediate support for crises. A key feature that is valued acrossall of these models is having anavailable and trained lived-experience workforce, said Lived-Experience Research Professor andCo-Director, Michelle Banfield. This project’s innovation is inbringing together community-ledmodels nationally, which includesan established First Nations ledapproach to social and emotionalwellbeing with Children’s Ground inthe Northern Territory as a partner. ‘Whose care is left behind?’ is aunique opportunity to meet one ofALIVE National’s actions to growways of understanding servicemodels through relational datasetsand experiential frameworks. Theresearch team will map servicelandscapes and documentinequalities across communities toform collective strategies thatensure culturally-responsive, lived-experience drive and accessibleoptions are embedded.
Once the service model audits arecomplete, the research team willuse the findings to determinewhich support nodes to prioritiseand which structural inequalitiesto target. The action nodes willthen co-create the most effectivestrategies to be implemented. “Our experience in empoweringcommunities to establish and leadtheir own services stronglyreinforces their consistent call forservices that are communitydesigned, non-clinical, peer-led,relevant, flexible, address barriersto access and are sustainable.”said Bronwen Edwards, ChiefExecutive Officer and Founder ofRoses in the Ocean. “This project offers an opportunityto explore the essential elementsof culturally responsive servicemodels and how they can becontribute to a more collectiveapproach to supporting people,”she said.According to Professor Palmer,this is the first time that a projectof this scale, with a focus oncommunity ecosystems, has beenundertaken in Australia.14“We are moving beyond thetraditional approach of providingmental health services that focuson behavioural or psychologicalinterventions directed toindividuals, towards a moreinterconnected ecosystem that ispreventive in orientation withenhanced access points that couldbe something as simple asconnecting together over tea orcoffee.” said Palmer.“It’s a truly exciting project thatcould really change the waypriority populations access andreceive mental health care. Wecan’t wait to get started.” addedProfessor Eades.Project Partners
WORLD MENTAL HEALTH DAY - OCT 1015In recognition of World Mental Health Day, a thought-provoking panel discussion on prioritising mental health inthe workplace was held by the ALIVE National Centre. Theevent brought together experts and advocates toemphasise the importance of mental wellbeing inprofessional settings.Moderated by Josh Reid Jones, the panel featured insightsfrom Alicia King, Angela Martin and Dr Mark Cross, eachoffering valuable perspectives on how workplaces canbetter support mental health and the importance of anopen dialogue. Contributions by Victoria J Palmer, PhillipOrcher, Michelle Banfield, Lisa Brophy and Priscilla Ennalsalso added depth to the conversation. The closing session, delivered by Bircan Eras, provided anopportunity for reflection with Phillip Orcher inviting thosepresent to experience deep listening with Dadirii. We aregrateful to the Miriam Rose Foundation for granting uspermission to play the video. “To listen deeply is to connect” Miriam Rose Ungerrnmerr It’s time to prioritise mental health in theworkplace
THE HIDDEN BURDEN OFYOUNG CARERSWhen most people think of carers, the imagethat comes to mind is that of adults lookingafter those who are unable to care forthemselves due to age, illness, disability orcircumstance. However, there is another, often-overlooked group also shouldering care givingresponsibilities: children and young people,some as young as eight years old. In Australia alone, an estimated 235,000individuals under the age of 25 provide unpaidcare for family members with disabilities,mental ill health, chronic conditions or age-related frailty.Unlike adults, these young carers shoulder thesecaregiving duties during their formative years,from childhood through key transitional periodssuch as progressing through school andentering the workforce. The impact on theirlives is significant - decreased sleep, less timefor studies, exhaustion, social withdrawal, andsignificantly elevated risks of mental healthissues like depression and anxiety. Young carers face poorer physical and mentalhealth, increased isolation, higher mortality risk,educational disengagement, lowerqualifications, reduced employment prospects, 16UNDERSTANDING AND SUPPORTING YOUNGCARERS IN AUSTRALIA
and entrenched financialinsecurity. This can create a viciouscycle where the psychosocialsocioeconomic disadvantagescompound and lead to furthermarginalisation.Despite the profound effects oftheir caregiving roles, many youngcarers struggle to access thesupport they desperately need. Arecent narrative review byresearchers at The University ofMelbourne examined the availableprograms for young carers'mental wellbeing across multiplecountries, including Australia, theUK, Denmark, France andGermany. A number of programs wereavailable including buddymentoring, social activities, servicenavigation, peer support groups,family interventions, respitecamps and specialised websites.Evaluated outcomes showbenefits like improved emotionalwellness, new coping skills, respitefrom duties, better familydynamics, social connections andgreater trust in personalrelationships. 17However, the researchers alsofound an urgent unmet need forexpanded access to community-based programming specificallyrelevant to young carers. They alsoemphasise the importance ofinvolving young people in the co-design of any future initiatives toensure they are effective andrelevant.Young carers are missing out ontheir childhoods and oftensacrificing their futures to care forothers. More must be done tosupport their wellbeing, break thecycle of marginalisation andempower them to thrive.
‘Forgotten Australians’ are people who were placed ininstitutional care as children, where they were often subjectto abuse and neglect. Experiences of powerlessness anddehumanising treatment in institutions as childrencontinues to haunt them in older age as they areconfronted by the possibility of needing to access aged carein institutions. Recently awarded the Lived-Experience Led StorytellingAward at the 2024 theMHS “Finding Common Ground”conference in Canberra, this short film follows ForgottenAustralians as they investigate the reality of ageing, theiroptions for residential care and the fears that are igniting inthis period of their lives. Participants in the film frequently told the research teamthey would rather die than face powerlessness, loss of 18Award winning lived-experience led film about theForgotten AustraliansBEC MORAN, STEPH VADJA, GAIL KENNING, JILL BENNETTAND VOLKER KUCHELMEISTERI’D RATHER DIE THAN BE INAGED CARE
freedom and the potential forfurther abuse as they age.This is an urgent social issue, asthe thousands of children placedin out-of-home ‘care’ in the1930s-1960s, including formerChild Migrants, are now an ageingcohort. Aged care providers arerarely familiar with traumainformed practice, let alone theexperiences of ForgottenAustralians. The film hopes to raise awarenessof this critical issue, which manyAustralians know little or nothingabout. The creators also hope thatthe film can be used as a freetraining resource for aged carestaff, policy makers and otherswho work with ForgottenAustralians.This project was an initiative ofThe Big Anxiety Research Centreand Article One. Funding for theproject was provided by theUNSW Ageing Futures Instituteand research and filming wascarried out on Whadjuk NyoongarBoodjar land.19Bec Moran with the award at the 2024theMHS conference in CanberraFurther InformationResearchprojects &initiativesFilm, sound,graphics &motionConferences,forums, seriesResearch,projects, eventsWatch the awardwinning film
In July, Wiradjuri Researcher Wendy Hermeston,Gumbaynggirr Muruwori Researcher Phillip Orcher andVictoria Palmer, visited our partners in a new researchproject in Mparntwe (Alice Springs) to discuss the FirstNations led Children's Ground approach working acrossCentral Australia.WINTER - SPRING ALIVE NATIONAL ACTIVITIESPEOPLE, RESEARCH, PRESENTATIONS AND ACTIONS.ENGAGEMENTThe ALIVE National Centre Database of Mental HealthResearch Priorities is growing. The database has thepriorities shared by people with lived-experience and carer,family and kinship groups from 2022-2024 included.20UPDATEViewtheMHSePostersAugust was a busy month with the TheMHS “FindingCommon Ground” conference in Canberra. Here MatthewLewis provided an update about the Neami NationalImplementation Co-Evaluation project that looks at how fiveadult health services are employing an integrated clinicaland peer workforce, and Prof. Victoria Palmer shared somedetails from the new loneliness project “A-Part of theCrowd”. This project looks at young people’s experiences ofloneliness during life transitions. Prof. Lisa Brophy also gavetwo presentations in psychosocial rehabilitation andVictorian prevention and recovery care services.ViewALIVEdatabaseofresearchpriorities
VIEW NEAMI NATIONAL SNAPSHOT 1VIEW NEAMI NATIONAL SNAPSHOT 221
ROADMAPACTIONS TO THE CALL22UPDATETo affect meaningful change, there must be action. Butaction without direction is ineffective. Here are the fivefoundations for our actions to the call Casing the Net forWhat Matters and for Whom where everyone can directchange in mental health care and communities.Be an agent of change1.2.3.4.5.Deep listeningMaintainthe wholeHope &connectednessHolisticwellbeing
25Service designers, systemplanners, researchers and policydevelopers can be leaders ofchange by ensuring that:Lived-experience is central todesign, planning,implementation andtranslationServices adapt to people’sneeds not people adapting tothe service.CONNECTEDNESS & HOPEHOLISTIC WELLBEING5.BE AN AGENT OF CHANGEParticipate and drive policy,practice and social change by:Addressing the priorities ofpeople most impacted inresearch, policy and practiceUn-learning research methodsthat are no longer fit-for-purpose to respond to needs.To implement change in ourmental health and wellbeingecosystem, everyone needs to:Implement experientialknowledge processes, practices,systems and valuesFoster everyday possibilities forconnection and hand powerover to communities to lead.1.4.Expand how holistic wellbeing isunderstood, practiced andimplemented by:Encompassing physical, social,cultural, economic, spiritual,mental and environmentalaspects of lifeRecognising that new ways ofdoing are needed to embedholistic approaches for everyone.Government, care providers andresearchers can:Embed processes for deeplistening in all care, policy andresearch developmentFund, support and resourceappropriate First NationsGroups to lead change.DEEP LISTENINGMAINTAIN THE WHOLE2.3.Want to do more to affectchange? Click HERE todiscover specific actions.23
24NETWORK Demonstration Project update:The MOVEMENT study is animplementation trial of anexercise physiology service forpeople with severe mentalillnesses with the aim ofevaluating changes to quality oflife and recovery. This projecthas been recently submitted forethical review. Implementationis planned for 2025.Link-Me+ is mid-way through itsfirst year of optimisation forgeneral practice. Following acareful co-design process themodel of care will soon besupported by a framework ofimplementation guards andmeasures. Our biggestchallenge is the lack of softwareuniformity within and betweenpractices. A few key GP practiceshave agreed to trial the patientjourney using Link-Me+ whilewe work through the inter-operability problem. The projectis still on track to roll out to thefirst practices in early 2025.A lay summary of the Co-Design Living Labs philosophyof practice paper has beendeveloped, highlighting keymessages and the importanceof having a philosophy ofpractice to help ensure theactions of the network matchour intentions. Some of our co-leads attendedan online meeting hosted bythe Mental Health Commissionin WA, who launched theAboriginal and Torres StraitIslander Lived-Experience-ledPeer Workforce Guide – ALearning Tool for All PeerWorkforces and Organisations.This is a great resource thatprovides guidance fororganisations to establish,sustain and continuouslyimprove lived-experience workwithin their service as well ashelping the workforcesthemselves better understandtheir role and responsibilitywithin their organisation.
The i-LEARN one day shortCourse was recently held in July.Topics covered included:interviewing complexity, peer.lived-experience researchmethods, Aboriginal researchapproaches and looking afteryourself in complex research.25UPDATECongratulations to lived-experience collective member,Helena R, on presenting her PhDcompletion seminar on 15 Aug,2024. Helena’s research focuseson the lived-experiences ofpeople in mental health crisiswho have accessed crisis care.Helena recommends thatsociety undergoes a conceptualshift to re-frame mental healthcrises as a time and place ofpossibility and a potential pointof transformation. Click here to find out more.The 2024 Funding Galaxy Q&Apanel: “Aligning Story, Valuesand Funding Support: Findingthe Self in Research FundingSystems was held online on 8thAugust. If you missed it, youcan check out the insightfulconversations here.The co-created guide forresearchers navigating themental health funding galaxy,based on this event, is updatedannually and will be updatedshortly here.Applications for Early CareerResearcher Seed Fundingoutcomes and Mid-careerResearcher PACE awards willwill be announced on October10th.The seed funding showcasewas held on 5th September.Presentations were given byAmelia Gulliver, Alyssa Milton,Caitlin Fehily, Alyssa Morse,Renee Fiolet, Alana Fisher,Lakshmi Neelakantan andKatherine Reid.
RESEARCH OPPORTUNITYAre you 18-25 years old? Help us better understandloneliness in young adulthood. We want to to helppeople feel more connected. Share your experience of loneliness during times ofchange. You can also share videos, artwork, poetry orwriting.Email us to express your interestPrefer to attend a workshop? Ready to share?Visit the website 26
CALENDAR272024 QUARTERLY FORUMFEB 13 Theme: Live4Life Co-EvaluationLocation: OnlineTime: 1:00pm - 3:00pm2025ANNUAL SYMPOSIUMMARCH 26-28Theme: Holistic TransitionsLocation: 26 March In-person and onlineTime: 9:30am (AEST)27-28 March In-person onlyTime: 1:30pm (AEST)PROGRAM IS LAUNCHING OCT-NOV 2025 - STAY TUNED FORDETAILS.READY, SET TRANSLATENOVEMBER 13Theme: Lived-Experience ResearchPresenter: A/Prof Nev JonesLocation: onlineTime: 1:00 - 2:00pm (AEST)QUARTERLY FORUMDEC 4Theme: A focus on the RoadmapLocation: OnlineTime: 1:00pm - 3:00pm