a. Kia korero: Let’s talk is the first public facing advance care planning campaign in Aotearoa New Zealand
b. Living well right up to the end: Journeying towards Compassionate Communities
All authors: Mrs Susan High, Strathcarron Hospice,
Dr Sally Boa, Strathcarron Hospice,
Mrs Marjory Mackay, Strathcarron Hospice
Presenting authors: Marjory Mackay
As a Hospice, we want to grow capacity in our communities to enable people to care for each other in the face of illness and death.
To explore, grow and test community supports and community driven interventions which help people to live and die well.
We started out five years ago by developing a volunteer befriending service to address isolation and loneliness right up to the end of life. We then engaged with people living with long term conditions and their carers in two of our local communities about what mattered to them when their health declined? Listening to their issues led into further work to co-produce a set of resources about thinking ahead, planning for the end of life and how to talk about this with others. We have worked with volunteers to map local community assets, developed befriending from a ‘service’ into a support anchored in communities and co-developed a range of additional community led interventions.
People with deteriorating health, their carers and their communities want to maintain control and choice and help each other plan for the end of life whilst getting on with living. They have clear views and are motivated to try out their own initiatives to support themselves and their wider communities. Examples include community led ‘pop up stands’ about planning ahead; wellbeing cafes; ‘community connector’ ambassadors; communication aids (Talking Mats) for Planning Ahead.
Conclusion and Application to PHPC
People want to support each other and plan for their future in their own way, in their own social context and in their own time.
Providing meaningful and valued support through community empowerment needs to be nurtured to help people to live and die well.
c. The perception of people with cancer on starting conversations about palliative care on themselves: A qualitative interview study
All authors: Kim Beernaert, Anne-Lore Scherrens, Joachim Cohen, Annick Mahieu, Luc Deliens, Benedicte Deforche
Presenting author: Kim Beernaert
Background: Despite the benefits of timely initiation of palliative care for persons with cancer, it is often initiated late or not at all. Communicative behaviours and patient-centered care are both important determinants for timely initiation of palliative care. However, research is barely focused on patients’ communicative behaviours and patients’ perspective.
Aim: 1) To understand and explain the behaviour ‘starting a conversation about palliative care with a health professional’ from the perspective of persons with non-curative cancer by using behavioral theories (eg Theory of Planned behaviour) 2) To formulate a behavioural model for the defined behaviour.
Methods: A qualitative study using semi-structured face to face interviews with 25 persons with non-curative cancer: 13 not (yet) receiving palliative care and 12 already receiving palliative care. Identified determinants related to ‘starting a conversation about palliative care with a health professional’ were fitted in concepts of behavioural theories (eg ‘attitude’ of the Theory of Planned Behaviour).
Results: Some participants were positive and others negative towards starting a conversation about palliative care with a health professional. The oncologists and the family physician were the preferred health professionals. Determinants facilitating and hindering the behaviour were identified: awareness (eg perceived health threat); knowledge (eg about palliative care possibilities); attitude (eg association of palliative care with quality of life or death); social norm and influence (eg the relationship with the health professional); and perceived behavioural control (eg self-confidence).
Conclusion: The identified modifiable determinants of our behavioural model can be used to develop more promising interventions promoting palliative care communication initiated by the patient and timely palliative care initiation.
d. Developing a model of community engagement in a UK hospice: Taking a leap of faith
All authors: Nikki Archer, Supportive Care Director, St Giles Hospice, Lichfield, UK.
Ian Leach, Community Engagement and Supportive Care Manager, St Giles Hospice, Lichfield, UK.
Presenting author: Nikki Archer
Following the launch of Dying Matters in 2009 and growing interest in a Public Health approach to palliative care we took a leap of faith and invested in a Community Engagement Officer. There was little known about a model for Community Engagement in hospices within the UK. After six years of work in this emergent role we have developed a model that provides a framework to demonstrate how our community engagement approach adds value to the work of our hospice and the wider community.
Using the model as a framework, we aim to demonstrate how a community engagement approach within the hospice contributes
• to care
• to education
• to income generation
• to the benefit of the wider community
There has been a four-stage approach to developing our community engagement model.
1. Following appointment, key objectives alongside an emergent strategy were agreed.
2. Four core questions were identified as the foundations for any community engagement project
3. A mix of narrative approaches ran parallel with a mind mapping exercise to track projects and outcomes
4. The model is a result of knowledge gained and reflections on our experience
We now use this model to articulate the benefits of community engagement for our hospice. Examples of this include
• the development of Bereavement Help Points
• a monthly book club for local people, patients and carers
• the delivery of Understanding Bereavement workshops to businesses and voluntary sector organisations
• Using Income Generation events to engage people in Dying Matters conversations
Having developed our model we would now like to share it with others and have an opportunity to have conversations with other looking to build compassionate communities through a public health approach.