On Friday 11 September 2020, the HASH Network co-hosted the online Autism in Academia seminar with the RMIT Social & Global Studies Centre to mark Social Sciences Week.

The seminar brought together Autistic activists, academics and the public to discuss how universities and research can be more accepting of Autistic people. We heard from three Autistic activists engaged in research and academia about their experiences.

Kathy Isaacs (she/her), Chair of the Autistic Self Advocacy Network – Australia & New Zealand (ASAN-AuNZ) and CRM Administrator at the Cooperative Research Centre for Living with Autism (Autism CRC), commenced our seminar with a presentation on the importance of researching with the Autistic community as partners throughout the research process.

Dr Jac den Houting (they/them), Postdoctoral Research Associate at Macquarie University and Secretary of the ASAN-AuNZ, followed with a presentation describing the findings from their recent publication on the extent and nature of community engagement in Australian research projects commissioned by the Autism CRC. The publication can be accessed here.

Beth Radulski (she/her), PhD candidate and Project Officer: Neurodiversity at La Trobe University, concluded with a presentation outlining how La Trobe University are working towards being more inclusive of Autistic and other Neurodivergent staff and students.

Over 120 people attended the seminar live, including people from across Australia and internationally. The online format allowed people from across the globe and in different time zones to join in. The HASH Network looks forward to presenting future events in an online format.

If you were unable to attend or would like to revisit the event, the recording is now available on the Social and Global Studies Centre website.

Please feel free to email Dr Anna Urbanowicz at anna.urbanowicz@rmit.edu.au with any questions.

The Creative Wellbeing Program is an initiative to introduce creative practices in care services. The program is run by Juan Sanin, Fellow in the Health Transformation Lab (HTL) and Lecturer in the School of Design in RMIT University. Using a ‘friendly hacking’ approach, Juan embeds himself in care organisations, where he works with staff and users to establish ‘lo-fi living labs’: spaces for social innovation based on improvisation, local knowledge, low-tech and DIY. The program started in 2019, when Juan worked with Bendigo Health creating a lo-fi living lab to introduce art-based activities in the psychiatric services of the hospital. 

This year, the HTL is bringing the Creative Wellbeing Program to Royal Freemasons Gregory Lodge, an aged care facility where Juan and a group of Industrial students plan to create a lo-fi living lab to design toolkits for delivering visual arts and storytelling activities for residents. In early March, Juan and his students visited Gregory Lodge a couple of times to meet and hang out with residents, but a couple of weeks later Covid-19 was declared a pandemia, spatial distancing measures came into place, and aged care facilities were locked down. 

Figure 1. Students and residents 

Although face-to-face collaborations had to be suspended this wasn’t the end of the project. The group of designers have started a remote collaboration with Gregory Lodge residents. Building on the method of cultural probes and assisted by Matiu Bush (Deputy Director of the HTL), Juan and his students are sending ‘care packages’ to 18 residents involved in the project. Each care package includes a letter, chocolates and a series of prompt cards that will facilitate a conversation between residents and students. Based on these conversations students will gain insights and inspiration to complete their projects.

Figure 2. Care package and its contents

Since spatial distancing measures came into place, work, education, research and social life have moved to online platforms. Online research collaborations are becoming very common, but a digital format wouldn’t have worked well in this specific project. Students have enjoyed hand-writing the letters (something completely ‘new’ for some of them) and the residents have expressed gratitude and happiness after receiving their care packages.

Figure 3. Resident receiving package

Gregory Lodge staff is helping the team of residents and designers to continue the collaboration. At the end of Semester 1, students will send functional prototypes of their projects, which include a self-published zine presenting stories and art works made by residents; a toolkit for recovering forgotten trades & hobbies; a ‘reminiscence box’ that will help Chinese residents to connect back with their motherland; and a ‘prompt capsule’ for engaging residents in visual arts, performative and literature activities. Each prototype will include instructions explaining staff how to test the prototypes with residents and recommend improvements. Next semester these prototypes will be refined to be implemented as part of the Creative Wellbeing Program for Aged Care. 

Figure 4. Resident reading the letter sent by one of the students

After almost ten years, Creative Director, and HASH-network member Dr Peta Murray, has stepped away from the not-for-profit arts-and-health organization The Groundswell Project she co-founded with clinical psychologist, Dr Kerrie Noonan, back in 2010. Murray’s departure was announced, as she was formally farewelled, at the recent PHPCI2019 Conference held in the Blue Mountains, in October 2019, and follows Dr Noonan’s exit earlier this year.

The Groundswell Project has been a game-changer in promoting death literacy in Australia and is responsible for initiatives like Dying to Know Day, as well as a research-partnership-based national Death Literacy Index, and for pilot programs, currently rolled out nationwide, around the concept of Compassionate Communities. In its early years, The Groundswell Project delivered three FilmLife Projects in partnership with The Organ and Tissue Authority, paired up with Year Eleven students from Penrith High School to deliver three iterations of a Drama Project around end-of-life, worked with Rookwood Cemetery to deliver Hidden, a sculpture prize and walk staged in a graveyard, and numerous other initiatives, workshops, festivals and events designed to capture and restore community confidence, capacity and knowhow around dying, while challenging institutional ‘ownership’ of death and the pathologizing of grief by medical and funeral professionals.

As part of her final pro bono contribution, Murray curated an arts program for and within the PHPCI2019 conference, and also, alongside colleague Niki Read, delivered a community fringe festival, From the Brink. She also presented one of her own works, the installation and performance diptych, vigil/wake. This work of live art has been developed over three years, beginning with two seasons at North Melbourne’s Arts House, before being further refined within On Loss: A Public Re/w/rite, for the Melbourne Writers Festival 2019. Collaborating artists are Rachel Burke, Jane Murphy, and more recently, Thembi Soddell.

Murray, now a VC’s postdoctoral research fellow in the School of Media and Communication at RMIT University, will continue her work on the development of co-created, arts-based secular ceremonies and collaborative methodologies expressive of an activist intent, while Dr Noonan is now with the National Association of Loss and Grief (NALAG).

The Groundswell Project will celebrate its tenth anniversary in 2020.

350 delegates from all over the world converged over 12-16 October on the 6^th Public Health Palliative Care International Conference, held in the Blue Mountains and co-hosted by Western Sydney University and the The Groundswell Project, a not-for profit co-founded by HASH network member, Peta Murray.

The theme of this conference, Compassionate Communities in Action: Re-claiming Ageing, Dying and Grieving brought together researchers, clinicians, artists and practitioners in a unique interdisciplinary gathering built upon the Ottawa Charter of Professor Allan Kellehear and the foundational work of Dr Suresh Kumar.

Two years in the making, this year’s conference endeavoured to walk its own talk, not just activating but also “artifying” most panel sessions, under Peta’s curatorial eye. It also made itself porous at the edges, admitting members of the Greater Blue Mountains communities through various events that were outward looking. These included a Fringe Festival: From the Brink, curated by Niki Read, and featuring a death-themed film festival, book launches, exhibitions, a panel discussion among artists who work on end-of-life issues through material and writing practices and, as a major drawcard for a hard to reach demographic, an evening session dedicated to Men and Mortality, featuring the Spooky Men’s Chorale.

By day, delegates pored over a packed program of workshops and presentations, book-ended morning and night by opportunities to collaborate in playful, exploratory and creative activities. Local dances from Dharug country were shared by members of all female indigenous group, The Wagana Dancers, at a moving opening ceremony.

Early morning poetry workshops took place in the scenic bushland setting, amidst whoops from lyre birds and shrieking cockatoos. A Dawn Chorus of delegates, under the musical direction of Rachel Hore, OAM, met at 7.15 each morning to practice a suite of selected songs that were later performed alongside community choristers in the closing ceremony.

A corner of the foyer was dedicated to the construction of a bower, and delegates were invited to adorn it with found objects, trinkets and messages in bower bird blue. A series of small films, Michele Aaron and Jed Jerwood’s Life:Moving were available on iPads for private viewing all day and many delegates also chose to attend vigil, Peta Murray’s contemplative installation for one, followed by its companion work, wake, a performance-cum-ceremony for groups of twelve, devoted to mourning the unmourned. A series of textile works by artists Anzara Clark, Sophie Conolly and Jessie Deane braided all of this together within the theme of the fabric of life and death.

The conference finale, hosted by incoming PHPCI President Dr John Rosenberg, included the announcement that Belgium will co-host the next conference, in 2021, alongside colleagues from the European Association for Palliative Care. For further information: http://www.phpci.info

Monday 21 October 2019 3:00 pm – 4:00 pm

Health Transformation Lab, Level 2, 155 Pelham St, Carlton, VIC 3053

Register for this event here

A partnership with the Health Transformation Lab and School of Art Creative Care:

Professor Carol Tishelman and PhD student Max Kleijberg, from Karolinska Institutet Division of Innovative Care, will discuss a program of end-of-life research within the Swedish context. Carol leads the DöBra (a pun meaning both ‘dying well’ and ‘awesome’ in Swedish) program, which is a cohesive national transdisciplinary research program. The DöBra research program aims to investigate how culture, the environment and conversation can promote constructive change and support better quality of life and death among the general population, in specific subgroups and in interventions directed to staff caring for dying individuals, their friends and families. DöBra uses ideas from new public health and the Ottawa Charter as umbrella theoretical frameworks and participatory action research as an overarching methodological approach, working with a range of projects in different settings to combine stringent research with sustainable change processes. In DöBra, we work in partnership with stakeholders and researchers with a wide variety of backgrounds in health care science, social sciences, humanities and creative practices. Carol will present the background to the program, its individual components, and discuss some of the challenges and possibilities encountered that may be relevant for the Australian context. Max will discuss his application of art and action research in the DöBra research program.

Professor Carol Tishelman is Professor of Innovative Care, at Karolinska Institutet in Stockholm, Sweden. This position is a joint position with employment at the Centre for Rural Medicine in the remote north part of the country, as well as with the Stockholm health care services.

Carol grew up in the Bronx, New York, has a background in women’s studies, and received a Bachelor of Science in Nursing from the University of Pennsylvania, USA. She has lived in Sweden most of her adult life and has worked at Karolinska Institutet, where she also received her PhD, since the mid-1980s. Carol instituted a research group in Innovative Care Research through an Endowed chair as Professor of Innovative Care funded by Investor AB (October 2014-Sept 2019) , and now co-leads the group, which has now grown to a Division. Carol has conducted research in palliative care for several decades, and leads the national competitively-funded DöBra research program in Sweden, aimed at integrating palliative care, public health and health promotion. She has been on the steering board of major international organizations in her field, i.e. International Society of Nurses in Cancer Care, the European Society for Psychosocial Oncology and the European Association for Palliative Care. She is recently become the 2nd registered nurse elected to Academia Europeaea ( equivalent of a European academy of arts and sciences).Carol has received competitive funding from a range of national agencies and has led major national and international projects in a variety of areas related to nursing, (e.g the Swedish component of the International Cancer Benchmarking Partnership on awareness, attitudes and beliefs about cancer in the population, and Swedish PI for the EU 7th framework financed RN4CAST project, on nurse workforce issues).

Max Kleijberg is a PhD student in Sweden at Karolinska Institutet, at the Division of Innovative Care Research in the DöBra research program. Max is originally from the Netherlands and has a design background with experience in working with innovation and social entrepreneurship projects in transdisciplinary groups. His PhD research is a participatory action research project aiming to support community engagement in end-of-life issues. Max collaborates with various community-organizations to develop Studio DöBra: places where children and elderly people can meet and work together on the theme of death and loss through art projects.

Healthtalk Australia mental health resources to be included on Head to Health website

Healthtalk Australia is an online resource dedicated to improving the health and wellbeing of Australians by harnessing the power of stories, rigorous research methods, and the internet to understand and share experiences of:

• what it’s really like to have a particular health condition or to care for someone with that condition, and
• what is and isn’t working in our health and social care system.

The only research-based digital repository of health experiences in Australia, Healthtalk Australia’s resources provide support and information to other patients and carers, and information to health professionals and health educators.

HASH network members Renata Kokanović, (Healthtalk Australia Director) and Kate Johnston-Ataata (Healthtalk Australia Co-ordinator) learned recently that four of their mental health digital resources on mental health and supported decision-making, mental health and carers’ experiences, depression, and emotional experiences of early parenthood have been approved for inclusion on Head to Health.

Head to Health is a national digital platform providing links to credible, high quality Australian digital and phone supports, resources and treatment options for mental health, and is working towards establishing a national certification framework for digital mental health services.

Currently Healthtalk Australia is one of only 33 organisations nation-wide listed on the Head to Health platform. Testament to the high quality of Healthtalk Australia’s digital repository of health experiences, Healthtalk Australia’s mental health resources received written support and endorsement from key stakeholder and project partner, the Victorian Department of Health and Human Services as part of the application process.

HASH Network researchers, Renata Kokanović and Kate Johnston-Ataata, are part of a new NHMRC Centre of Research Excellence on Women’s Health in Reproductive Life

Renata and Kate from the Social Research in Health Program (Social and Global Studies Centre, School of Global, Urban and Social Studies, RMIT University) are set to continue their research collaboration on women’s experiences of reproductive health with the Monash Centre for Health Research and Implementation (MCHRI), Monash University. Renata is an Associate Investigator and Kate a Research Fellow on the NHMRC Centre for Research Excellence on Women’s Health in Reproductive Life (WHIRL) announced on 29 August 2019.

A five-year, $2.499 million research program, CRE-WHIRL is aimed at improving health outcomes and quality of life in key areas of women’s reproductive health – Polycystic Ovarian Syndrome (PCOS), infertility and early menopause. The CRE-WHIRL will partner with patients, multidisciplinary practitioners and policy makers to address research and translation priorities under the national women’s health strategy. Renata and Kate’s involvement in CRE – WHIRL builds on their existing collaboration with MCHRI through the Early Menopause: Women’s Experiences and Health Practitioners’ Perspectives NHMRC Partnership Project.

Shifting paradigms: Conversations on developing a transformative agenda for future mental health research, policy and practice

To mark World Mental Health Day 2019, HASH network members Renata Kokanović and Chris Maylea from the Social Research in Health Program (Social and Global Studies Centre, School of Global, Urban and Social Studies, RMIT University) are hosting three distinguished speakers at RMIT University (City Campus) to engage with some of the most pressing questions surrounding the conduct of mental health research:

Vrinda Edan, Acting CEO of the Victorian Mental Illness Awareness Council (VMIAC)

Professor Katherine Boydell, Head of the AKT (Arts-based Knowledge Translation) Lab at the Black Dog Institute, University of New South Wales

Professor Isabela Granic, Chair of the Developmental Psychopathology Department and Director of the Games for Emotional and Mental Health (GEMH) Lab, Behavioural Science Institute, Radboud University, Netherlands

Join us for an afternoon of stimulating conversation on approaches to meaningful engagement with experts by experience, to transform the agenda for mental health research, policy and practice.

Date: 10th October 2019

Time: 4:00 – 5.30 pm

Venue: RMIT University (City Campus), Building 8, Level 4, Room 13, 360 Swanston Street, Melbourne

You can register for the event here.

For more information email hash_network@rmit.edu.au