This conference is a joint initiative of The GroundSwell Project and the Caring at End of Life research team at the University of Western Sydney. Through their in depth work exploring end of life caring and caring networks, this research team has helped define and explore the concept of death literacy. The researchers have published extensively and presented nationally and internationally, often as invited speakers at various conferences and symposia. This innovative research is also gaining a great deal of interest from the palliative care sector and is a constant source of inspiration here at The GroundSwell Project.

What to expect

We are calling it a conference, but this event brings together the head and the heart, intellect and creativity. The day will be divided into 5 themes each addressing a key question related to death literacy and the compassionate communities approach to end of life and death care. For each theme two presenters, one a researcher the other a practitioner, will creatively and intellectually explore a topic based on their expertise.

The day is designed to strengthen your practice and explore possibilities for the future.


Conference themes

Defining death literacy

Associate Prof Debbie Horsfall UWS and Kerrie Noonan The GroundSwell Project

Death Literacy in Practice 

Dr John Rosenberg QUT and Sarah Winch UQ

Practice example / participant reflection:

Victoria Spence, LifeRites

The role of social enterprise and the third sector in death literacy

Associate Prof. Rosemary Leonard CSIRO and Jenny Briscoe-Hough, Tender Funerals

Social action market place – who is this community? What are we doing together / apart? The future of Dying To Know Day.

Special Screening: Love In Our Own Time at 5.30pm following the conference.

Tickets here:

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**** Please note Dying To Know Day event hosts are able to attend the conference at a special rate. Register your event to get your discount code. 


Who is this conference for?

Anyone with an interest in social approaches to death, dying and bereavement.

Those with an interest in community development and capacity building approaches to end of life and death care.

Death workers and doulas, midwives for the dying.

Funeral celebrants and funeral directors.

Nurses and palliative care professionals / aged care workers.

End of life researchers and academics.

Pracademics.

Health promoting palliative care workers / community development workers.

All those working for social change.

Speakers

 

Debbie is a passionate leader in the field of inclusive, democratic, qualitative research in health, human services and community development. Her transformative agenda privileges people's voices during a myriad of challenging life events. As a result of her extensive scholarly work in the area of creative, community development and practice based research she has served on several editorial boards, co-edited and contributed to 4 scholarly research books,  and is continually approached as a reviewer across disciplinary fields. Working with informal carers and service providers in end of life care her current research explores how dying at home develops death literacy, health promoting palliative care, creative partnerships and compassionate communities.  


 
 

Dr Rosemary Leonard is a Senior Research Scientist in the Adaptive Social and Economic Sciences Program at the CSIRO and an Associate Professor in the School of Social Sciences and Psychology at the University of Western Sydney. She is Managing Editor of the refereed academic journal Third Sector Review. Her current research and publications related to three main fields:  Third-sector research, particularly volunteering and social capital,  Life-course and ageing and Social dimensions of environmental sustainability. For the past five years she has been working with Dr Debbie Horsfall on the Caring at End of Life Research Program a series of five projects funded by the ARC, University of Western Sydney, NSW Department of Aging and Disability, and The Cancer Council of NSW.


Kerrie Noonan is a cofounder and director of The GroundSwell Project, a social researcher and a clinical psychologist in palliative care. Kerrie has a long-standing interest in capacity building approaches to death, dying and bereavement, palliative care and how people can build their death literacy. With interests in health promotion, capacity building, social media, creativity and innovation Kerrie is passionate about the role that the arts can play in facilitating social and cultural change about death and dying.  Kerrie was a Co-researcher on the Bringing our Dying Home project and is a member of the Caring at end of life research team. Kerrie is currently completing her PhD in the School of Social Sciences and Psychology at UWS, exploring the stories of people using social approaches to death, dying and bereavement in Australia.  


 

Dr John Rosenberg is registered nurse with a clinical background in community-based palliative care. As a active researcher since 1999, he has focussed upon social models of health care, the application of health promotion principles to palliative and end of life care, and community development approaches to the support of dying people.As the foundation Director of the Calvary Centre for Palliative Care Research in Canberra, ACT (2011-2014), Dr Rosenberg established and led a program of research in palliative and end of life care. One stream of research responded to locally identified practice issues (such as emergency medication kits, volunteering, and delirium screening; the other stream continued his work in the areas of community development in end of life issues, including an ARC Linkage Grant led by the University of Western Sydney titled Caring at the end of life.

In addition to his current appointment in the Supportive and Palliative Care Team in the Institute of Health and Biomedical Innovation at QUT, Dr Rosenberg holds adjunct positions in the Palliative Care Unit, School of Public Health, La Trobe University as a Senior Lecturer, and in the School of Nursing, Midwifery and Indigenous Health at Charles Sturt University as Associate Professor.

 


 

Dr Sarah Winch is a health care ethicist employed at the School of Medicine, The University of Queensland, Consultant Ethicist at StaffandPatientSafety.Org and CEO of Health Ethics Australia, a not for profit company, that focuses on improving death literacy for every day Australians and compassion safety for clinicians. She teaches medical students ethics and law, conducts research on compassion and futility and provides consultation and advice to a wider variety of health professionals on issues of ethical concern.


Victoria Spence is a Life Rites practitioner creating literacy and capacity in individuals, families and communities as they approach the key events of their lives. She works with the full range of life events, from birth through to death.  Since 2002 years she has developed the practice of Integrating End of Life and After Death Care, working with her clients as they move through the transitions between the medical model and allied health professions, the funeral industry and  into ongoing Bereavement Care.

She holds a Masters in Death, Dying and Palliate Care from the University of Sydney (2005), a Bachelor of Arts in Philosophy, Performance and Community Development from the UNSW (1995) She is a qualified Funeral Celebrant and Bereavement Counsellor.

Her ‘Mortality Talking’ events and seminars offer participatory opportunities for people to know what is important to them at end of life. In 2010 she established the Living with Our Dead platform to create Public Site Specific Ceremony resulting in the annual ‘Picnic Among Friends’ and other community ceremonies that re-inscribe death and loss as a necessary and vital part of life. Seewww.livingewithourdead.com

More information on the full range of her practice can be found at www.liferites.com.au and www.victoriaspencecelebrant.com.


 

Jenny Briscoe-Hough is the manager at Port Kembla Community Centre and Tender Funerals.  Jenny has recently travelled to the US and the UK to undertake a funeral facilitator program and training as a funeral celebrant and funeral arranger. Prior to this training, Jenny worked with Ronald McDonald House and CANTEEN Australia which exposed her to the process of death and dying.When Jenny's mother died a few years ago she was shocked both by the cost and the lack of empowerment she felt during the funeral process. The more she spoke to others in her community, the more she sensed dissatisfaction around how we are caring for those who have passed away, especially for those in disadvantaged communities. This led to the development of Tender Funerals a community based not for profit funeral service. Tender Funerals will offer low cost, community based and green funerals. 


Kate Maguire - Conference MC

Kate Maguire's involvement and passion for supporting people living with progressive disability and facing end of life spans 25 years, through a variety of voluntary and career roles in the not-for-profit and social sectors.

Being raised in a family who talked freely about death as a part of life, has enabled Kate to gain rich personal insights into the enduring benefits of end of life being a natural and ongoing aspect of social discourse. Having been the Primary Carer for both her parents, Kate possesses intimate understandings of both the the tender joys and challenges faced by those caring for someone living with a terminal or life limiting condition. 

Kate's story of how she and her family supported her father's long expressed wish to die at home, featured as a chapter in "Intimacy of Death and Dying", published by Allen and Unwin in 2009.  For the past four years Kate has worked with the Motor Neurone Disease Association of NSW, providing educational and support programs for current and bereaved carers and those diagnosed with this debilitating terminal condition.

Venue

Information and Cultural Exchange 

Cnr Victoria and Villiers Rd Parramatta

Parking - on the street, or paid parking is available all day in the Novotel in Church Street

Closet train station Parramatta: approx 10minute walk

This event is catered.


This event is kindly supported by the Vasudhara Foundation.