a. What we want: Community perspectives on end of life support in Southwest Sydney
(speaking) Dr Mark Hohenberg, Western Sydney University
Ms Rubab Firdous, , Western Sydney University
Ms Gamze Abramov, Western Sydney University
Dr Genevieve Steiner, Western Sydney University
Sydney’s Macarthur region has an expanding population that is overwhelming local health services. Dementia prevalence is projected to increase by 460% by 2050. Recognition of, diagnosis, and support of those living with dementia as a terminal illness is inadequate now, with little preparation for the tsunami of cases in the future. Understanding community needs helps create meaningful and sustainable healthcare services.
To understand community needs for aged care medical services, palliative care and end-of-life support.
Qualitative semi-structured interviews were conducted at four nursing homes and nine General Practitioner (GP) surgeries. Three semi-structured focus groups were held at Campbelltown, Camden and Wollondilly councils representing community members. Interview notes were taken with focus groups recorded and transcribed. Qualitative analysis was conducted using Quirkos with results categorised thematically. Themes pertinent of end-of-life care were identified using ‘palliative, end-of-life and death’ keywords.
Nursing homes themes (representing 1476 residents) highlighted the need for completing advanced care plans (ACPs) to facilitate effective palliative care; effective family collaboration with healthcare workers was highlighted as critically important. GP (manage 695 geriatric-age patients daily) themes highlighted there was “scope for ACPs to be done in the community”, but it was difficult for GPs to do for several reasons. “Patients often initiates [ACPs]”, but “CALD patients don’t want to discuss”. ACPs were most often completed in hospital with GPs referring to ED for patients nearing the end-of-life. Fifty-seven community residents highlighted fear of hospitals and death but recognised the need for ACPs; frequently not wanting to go to hospital. End-of-life health literacy was poor, particularly in dementia.
This study identified different end-of-life service needs in three key stakeholder groups. Results suggest setting up effective palliative care services leading to community cultural change requires sustainable integrated care.
b. Golden years
Dr Lisa Williams
Professor Merryn Gott
I’ll stick with you baby for a thousand years
Nothing’s gonna touch you in these golden years . . .
- David Bowie
At times fictional stories have been incorporated into the healthcare literature to promote the comprehension of abstract ideas and concepts. Furthermore, fiction has also been included in academic texts in order to inform public policy and enhance learning and teaching. Used in such a way fiction can be helpful for bridging the divide between academic findings and the public’s potentially less specialised grasp of healthcare concepts and outcomes. However, what has not been investigated is how the creative use of fiction might elucidate a programme of palliative care and end of life research, in this instance that of the Te Arai Palliative Care and End of Life Research Group.
In this presentation I will present my short story titled Golden Years and discuss how my involvement in research with Te Arai has led to including within the story findings relevant to our group’s recent projects. These findings include a focus on older people’s frailty, social isolation and loneliness and the particular concerns of LGBTi entering residential aged care.
My artistic practice – in this instance expressed through a short story – provides an example of how storytelling can be used to explore core palliative care and end of life themes and messages
c. Torn from home: Working with the Bosnian community to improve the experience of death and dying
(speaking) Mrs Sharon Hudson- Community Development and Partnerships Lead, Birmingham St Marys Hospice
Kara Fereday- Education Lead- Birmingham St Marys Hospice
Liz Bryan- Director of Education, St Christopher's Hospice
Anes Ceric- Manager, Bosnia and Herzegovina UK Network
Ferid Kevric- Manager, Derby Bosnian Community Centre
Over 10,000 Bosnian refugees came to the UK, mainly in 1995, fleeing from war zones or concentration camps at the height of the holocaust. The Bosnian and Herzegovina UK Network (BHUKN) was set up in 1996 to represent this community at national and international levels providing access to culturally appropriate psychological and social support.
It was recognised by the Community that there were increasing numbers of traumatic deaths, with people experiencing poor outcomes at the end of their lives.
The Community approached St Christophers Hospice to support them to design a programme of education to enable volunteers within the community to be able to support end of life care at home. St Christophers approached Birmingham St Marys Hospice to work in partnership.
The QELCA model of education, practice experience and facilitation was agreed as an appropriate method to support the aims of the programme.
The aim was to empower key members of the Bosnian community to provide emotional support and practical skills to those facing end of life and their families to enable them to have the best possible experience.
A successful funding bid was submitted to Dunhill Medical by the BHUKN. Two facilitators from Birmingham St Marys Hospice were trained as QELCA facilitators and supported in the delivery of the programme by the Director of Education from St Christophers Hospice.
Five Community Development workers from the BHUKN attended the five day QELCA programme which included; setting objectives, practice placement, taught sessions, reflective practice and action planning. The next stage of the programme is six action learning sets supported by the Community Development Lead from Birmingham St Marys.
As a group of people together we have learned so much. Practice placements threw up organisational challenge and the model of educational delivery at the outset may have not given us the time to truly hear and understand the experiences of the Bosnian Community. QELCA supports a facilitation approach but has previously been used to support clinicians in practice, so may need some adaption to be used in a Community Development context. The Hospice are looking forward to the opportunity to learn and understand with the Community in the next stage of Action Learning.