Chair: Wendy Pearse
a. Equipping tomorrow’s professional leaders in palliative care to recognise and work with assets beyond the healthcare system
All authors: Louise Hickman
Presenting Author: Michelle DiGiacomo
Future generations of interdisciplinary palliative care providers need a new kind of training that emphasises the participatory role of communities, as well as the need to work with patients/families and other health professionals. With a majority of Australians preferring to be cared for and/or die at home rather than in hospital, access to community-based clinicians who understand how to facilitate this is imperative.
To design and implement subjects in a new, online Master/Graduate Diploma/Certificate course to prepare future leaders in palliative care who will drive reforms to improve end-of-life care quality and outcomes, including an emphasis on community-based palliative care.
Communications and public health subjects were designed at the University of Technology Sydney (UTS) in collaboration with leading clinicians, researchers and consumers. Curricula and assessments were enquiry-based and underpinned by frameworks of person-centred care, access and equity, and principles of compassionate communities. Student feedback was sought via a web-based questionnaire following the first semester in Autumn 2019.
Student feedback and the experiences of subject coordinators following delivery of the first two communication and public health subjects will be presented, including student satisfaction, perceptions of acceptability, utility, and engagement. Lessons learnt and suggestions for refinement will be discussed.
Conclusions and application to Public Health Palliative Care
These online subjects are part of the new online Masters of Palliative care that has been designed to prepare students for an advanced level of health care delivery across a range of settings, regardless of geographic location. Graduates of this program will be equipped to drive reforms to improve end-of-life care experiences, with particular emphasis on meeting needs of patients and families and enabling community networks.
b. The impact of online death literacy education for postgraduate psychology students
All authors: Dr Kitty Vivekananda, Carolyn Parratt and Mignon Tucker
Presenting author: Dr Kitty Vivekananda
The impact of online death literacy education for postgraduate psychology students
Promoting better end of life conversations is part of becoming a more death literate society.
This research investigated the impact of an online Death Literacy education module with postgraduate psychology students. Having end of life conversations with both adults and children was examined.
A mixed methods design was used with pre- and post- evaluations of death literacy.
Various dimensions of self reported death literacy increased significantly as a result of undertaking the online module.
Conclusions and applications to PHPC
Psychologist can play a re-imagined role in compassionate communities through their work in school settings and also facilitate more difficult end of life conversations.
c. Grief literacy: Operationalising compassionate communities in the context of bereavement care
All authors: Dr. Lauren Breen - School of Psychology, Curtin University, Australia
Dr. Susan Cadell - Renison School of Social Work, University of Waterloo, Canada
Dr. Amy Chow - Department of Social Work and Social Administration, University of Hong Kong
Ms. Karima Joy - Dalla Lana School of Public Health, University of Toronto, Canada
Mr. Daisuke Kawashima - Department of Psychology, Chukyo University, Japan
Dr. Mary Ellen Macdonald - Faculty of Dentistry, McGill University, Canada
Mr. David Roth - Pütz-Roth Burials and bereavement support, Bergish Gladbach, Germany
Presenting author: Dr Mary Ellen Macdonald
Death and dying are highly medicalized and professionalized in many contexts, generally occurring in hospitals, hospices, and residential aged care facilities. The compassionate care movement challenges the notion that death and dying should be housed within clinical and institutional contexts; further, it works to normalize conversations about death and dying by opening dialogue in public spaces. Community-based practices and conversations about loss and grief still tend to be framed within medical and professional paradigms, however, and remain marginal in this new agenda.
Purpose and Approach
Within the context of an international meeting on death, dying and bereavement, a group of scholars worked to theorize how grief could be better conceptualized and operationalized within the public health framework of the compassionate communities movement.
Together we develop the concept of Grief Literacy. We define grief literacy as an individual’s capacity to access, process, and use knowledge regarding the experience of loss. To illustrate a grief literate society, we developed vignettes to capture variability in the types of loss (death and non-death losses), as well as who is experiencing the loss (e.g., gender, age), who died (e.g., gender, age, relationship) and/or what was lost (e.g., pets, possessions, identity, role), when the death or loss occurred (e.g., time since the death, caregiving period), where the loss occurred (e.g., place of living, surroundings, relationships to other people), and how the person died (e.g., types of death) or the loss occurred (e.g., war). This capacity is multidimensional: it comprises knowledge to facilitate understanding and reflection, skills to enable action, and values to inspire compassion and care. These dimensions connect and integrate via the interdependence of individuals within socio-cultural contexts.
Conclusions and application to PHPC
In order to operationalize grief literacy, social groups need to work to understand the challenges and drivers so that it can be best implemented in our communities. We believe grief literacy augments the concept of death literacy, thereby further enhancing the compassionate communities approach.
d. Life’s questions: Getting our younger generation talking
Presenting Author: Lisa Patterson
Background: Mental Health Foundation reports; "We believe that many mental health problems are preventable, but for prevention to work for children, changes need to take place in our schools, from primary level upwards.
Life’s Questions (LQ) was developed following sessions in schools on Hospice care, volunteering and career pathways where students appeared keen to talk about the impact of death and loss. The Church of England initiative ‘Gravetalk’ which encourages conversations around life, death, funerals and grief became the foundation of LQ, which was successfully piloted with eight students.
Aims: Provide a proactive approach to creating a death literate younger generation with the resilience to support themselves and their peers through conversation and listening. This could in turn lead to a positive impact on their mental health.
Methods: Question cards used with a small group or assembly. A facilitator encourages conversation, debate and listening.
Results: Although in its infancy, attendance to date is 121 adults/school staff, 247 students and 7 awareness sessions to 76 people. Attendees have valued LQ as an open, non-judgemental forum to express thoughts, ideas and experiences, recognising that it is not a counselling therapeutic session. Feedback has included; ‘don’t be afraid of talking’, ‘being able to view things in another way will help me support friends going through grief’, ’I took away it is important to start talking’.
Conclusion: LQ empowers students to have conversations around taboo topics, which supports death literacy in our next generation. It enables them to know it’s ok to talk, it’s ok to be not ok and where they can go for further help. There has been a ripple effect in the community with conversations continuing long after the sessions. This initiative fits in with St Nicholas Hospice Care of creating compassionate communities.