1PM – 2:30PM
Location: Hampton Room 1
Please note: This time-slot contains 4 x 20 minute oral presentations
UNDERSTAND THE SOCIO-CULTURAL CONTEXT IN LOW AND MIDDLE INCOMES COUNTRIES IN A GLOBAL HEALTH PERSPECTIVE OF DEATH, LOSS AND BEREAVEMENT FOR RETHINKING A NEW MODEL OF CARE:
CASE STUDY FROM RWANDA POST-GENOCIDE SOCIETY
Presented by: Christian Ntizimira
The aim of this workshop is to identify and understand the socio-cultural context between low and middle income countries and high income countries regard dying which will help to rethink a new concept of care in palliative care and bring a comprehensive platform of exchange experiences. One of the most challenging encounters in medicine for clinicians and families are the ones between healthcare providers whose reality is rooted in science and medical data and patients and family members whose primary reality is rooted in culture. In LMICs, where the socio-cultural context has ruled the environment of the patient and avoid the complexity of goals of care which is sometimes considered as a non-scientific methodology in HICs, could generate a source of conflict and lack of trust in the future development of partnership.
In most of African reality, conversations about death can become adversarial and cause stress to the healthcare team and perhaps undue suffering for the patient. There are different methodologies from African culture perspectives which involves the community to talk about death and support families during the loss and bereavement.
By engaging the community to be responsive to death of the patient and loss & bereavement from the families in a post-genocide society where 1million people died in 100 days there is a tremendous contribution to bring back the part of humanity lost during the tragedy.
A PUBLIC HEALTH PERSPECTIVE ON BEREAVEMENT CARE
Presented by: Bruce Rumbold, Samar Aoun
In recent decades most attention devoted to bereavement has focused on providing counselling for bereaved individuals. Only recently have there been attempts to consider bereavement experiences in general society.
Our survey of nearly seven hundred bereaved clients of four funeral providers in two Australian states confirms a public health model predicting that over half the group would demonstrate low risk of complicated grief, another third moderate risk, while a small minority would meet the criteria for prolonged grief disorder. The survey also shows differing patterns of need and sources of support for each of the groups. Our findings suggest not only that the bereavement care provided by health services should be carefully targeted, but that a primary public health interest should be in the care that supports the majority of bereaved people. This care is provided in community settings by a range of people. Some are healthcare practitioners contributing through their everyday activities, not bereavement programs per se. Most care comes from people already involved in the everyday lives of those recently bereaved. These people are assets already in place, contributing to each other’s resilience. The most effective way to provide bereavement care is to support these ‘everyday assets’, ensuring that their care is recognized, appreciated, and not disrupted by over-reach from professional services.
In this presentation we will outline the findings of surveys and interviews undertaken with recently-bereaved people, and focus upon the types of partnerships needed for sustainable bereavement care by local communities.
RAISING BEREAVEMENT AWARENESS IN COMMUNITIES USING THE 9 CELL TOOL
Presented by: Jennifer Hunt
A growing body of literature supports tapping into the wisdom that is inherent in societies to support individuals and families in crisis. People often seek bereavement counselling because their families and communities seem uncomfortable with the extreme emotions that grief brings and are unwilling to allow the natural course of grief to unfold over what appears to be too lengthy a time. The bereaved are often ‘prevented’ from grieving normally and complications can set in. Grief is a highly personal experience yet played out within one’s culture with all the accompanying rules. The 9 cell tool is a simple yet effective group-work technique designed in Zimbabwe to draw upon the knowledge of a community in order to normalise and support the bereaved within that community. The presentation will describe the tool that draws upon experiences of the participants and combines these with a didactic process to raise awareness of what grief feels like over time, how people express their grief depending on gender, context and culture and how one’s environment expects or accepts manifestation of grief over time. Anecdotal evidence suggests this is an effective approach in normalising bereavement, resulting in appropriate grief support within families and communities. Plans to formally evaluate the tool are currently in process.
Presented by: Rachelle Mcguire
In our current culture grief continues to be treated as pathology both by our larger social contexts and by health care professionals. This inhibits us from the ability to metabolize that which is a deeply normal, frequently occurring human experience. This workshop will address the ways in which we pathologize grief and explore some ideas as to how we might choose to do this differently in the future. The workshop will identify four things that are required to metabolize grief well as well as ideas for how we may engage our communities to assist in this very metabolization.
Location: Hampton Room 2
Please note: This time-slot contains 3 x 20 minute oral presentations
COMPASSIONATE OTTAWA: A CASE STUDY
Presented by: James Nininger and Jacqulin Holzman
The compassionate community palliative care movement is a recent development in Canada. A group of Ottawa leaders held a community meeting in November 2016 to determine interest in Ottawa becoming a compassionate city. The interest was strong and since then the leadership group has accomplished a great in the first phase of the initiative. The purpose of the presentation is to share the Ottawa experiences.
USING PHOTOVOICE TO CAPTURE THE IMPACT OF CREATING CARING COMMUNITIES IN ST. JAMES TOWN
Presented by: Krystyna Kongats
Background: Despite growing interest worldwide in health promoting approaches to palliative care, little has been written in the context of ethnically diverse urban settings. This is problematic as current evidence on health promoting approaches to palliative care may not adequately reflect the experiences of those living in such diverse urban communities.
Aim: In collaboration with Hospice Toronto, we seek to understand how community members living in an ethnically diverse, high density urban neighbourhood support each other through chronic life-limiting illness and palliative care. Second, we will map out the perceived impacts of such an approach on those involved and the wider community.
Methods: To achieve our aims, we used Hospice Toronto’s Creating Caring Communities model as a participatory case study in St. James Town, one of Canada’s most densely populated and ethnically diverse neighbourhoods. In total, 19 community helpers, clients, carers, and staff joined the project and participated in a 7-month photovoice project.
Results: Project members developed strong relationships with their neighbours and identified different ways they provided support to those who are isolated with a serious illness (e.g., interpretation, help at home, connecting with local social agencies). Participants emphasized that care was ‘organic’ and ‘reciprocal’. Different impacts were also identified including reduced isolation and an opportunity to gain ‘Canadian experience.’ Facilitators (e.g., speaking the same language) and challenges (e.g., balancing volunteer protocols with ‘just being a neighbour’) were also noted.
Conclusion: This study contributes to the evidence base on health promoting approaches to palliative care in diverse urban communities.
BUILDING COMPASSIONATE COMMUNITIES THROUGH SCHOOL, WORKPLACE AND FAITH COMMUNITY INITIATIVES
Presented by: Bonnie Tompkins, Pam Blackwood
Death, dying, loss, and bereavement are often taboo topics. Discussing them in schools and workplaces can thus present very hard nuts to crack.
In this presentation, participants will learn about successful initiatives to engage schools, workplaces, and faith communities in discussions about the sensitive topics of death, dying, loss, and bereavement. The presentation will highlight why the initiatives were created, the pros and cons of the strategies adopted, and final outcomes. Participants will be able to use the experiences from these compassionate community projects to help build their own initiatives within their community.
Location: Room 106 A
Please note: This time-slot contains 4 x 20 minute oral presentations
COMPASSIONATE COMMUNITY NETWORKS FROM WITHIN A GP PRACTICE –
REDUCING HOSPITAL EMERGENCY ADMISSIONS BY 30%
Presented by: Helen Kingston, Jenny Hartnoll
Frome Medical Practice provides care for the 29,000 residents of Frome and the surrounding area. Since 2014, the practice has combined a community development service with an internal hub in the GP practice which identifies those in need of support. The community development service fulfills 2 functions; enhancing the naturally occurring supportive networks that surround people and connecting people into community resource. If the resource needed creating, the community development service helped this process, creating new groups according to community requests.
The outcomes have had a significant impact in a wide variety of areas. Whereas Somerset county has seen a rise of 32% in emergency hospital admissions in the last 3 years, this remained stable in Frome. For those with 3 or more long term conditions, there has been a 30% drop in admissions. A compassionate communities programme focused on people at end of life is showing a marked increase in home death rates. Patient qualitative outcomes show improved quality of life in a number of areas. Working lives of the health professionals involved in the project also improved. The presentation will describe the model and give details of the outcomes, which are continuing to improve. We will also describe how components of the model can be adapted to local circumstances, with the use of Institute of Healthcare Improvement quality improvement methodology as the main tool of change management.
COMMUNITY RESPONSES TO HOME-BASED END-OF-LIFE CARE FOR CHRONICALLY-ILL CANCER PATIENTS IN LAGOS, NIGERIA
Presented by: Olanrewaju Onigbogi
Current global trends seem to encourage the gradual shift of end-of-life care for cancer patients from the hospital settings to homes. This has created increased complexity in resource-limited settings with many at risk of low quality or inadequate end-of-life care. This study was conducted to determine the perception of relatives of cancer patients in Lagos about home-based end-of-life care.
We conducted key informant interviews for relatives of cancer patients who were recruited from the a cancer clinic. Each interview was recorded and transcribed with the data analyzed using NVivo 8.0. Emerging concepts from the data were labeled, categorized and coded as appropriate.
We interviewed a total of twenty eight persons ( eighteen females and ten males) who had accompanied cancer patients to the clinic. We excluded those who did not currently reside in the same location with the patients. By the 24th interview, we had no new ideas or themes emerging through the later interviews. A key concept is that of the expenses involved in creating supportive environments for these patients. Another important concept was the percieved inability to manage pain appropriately at home.
There is a need to encourage the development of personal skills or care givers and strengthen community action as it relates to end-of-life care for cancer patients in resource-limited settings.
CARING THROUGH UNCERTAINTY: SHARING A PRACTICAL GUIDE BY PALLIATIVE CARERS AT HOME
Presented by: Merryn Gott
This presentation showcases a new book written by Ros Capper, who cared at home for her husband, Mike, while working part time prior to his death from cancer. Ros identified a significant gap in the current available support for palliative home carers. She decided to address this gap by writing a book drawing on her own experience and inviting four other families who had also provided palliative home care to contribute. The book addresses many issues which have been overlooked by the ‘professional’ palliative care literature. These include tips for how to build a ‘home care team’ and when to have honest conversations about care choices; Ros, for example, identifies periods of temporary respite from symptoms following palliative treatments such as chemotherapy as a good time to embark on these.
The need to share knowledge amongst palliative home carers was identified in a participatory project led by Lisa Williams. The Te Arai Palliative Care and End of Life Research Group provided support for the project, including some of the production costs of the book. As such, this project also provides an example of how researchers can work collaboratively with the people who hold the real knowledge and expertise regarding palliative home caring to create practical resources to support their vital work.
Ros is not able to attend the conference in person, but will appear via video to describe the project and her plans to use the book as a foundation for a larger community initiative.
DEVELOPING AN INTERVENTION FOR OPTIMIZING END OF LIFE CARE IN ANY SETTING
Presented by: Emily Dobson
It is a ‘wicked problem’ (1) that the gold standards of care created within the hospice setting are not always effectively influencing national, regional or local policy. This struggle is something which the public health sector has successfully contended with. In particular an approach known as Health in All Policies(1) (HiAP) has been developed to lay down the rules of engagement and guide the exchange between organisations from all sectors. This synergy allows for an exploration of the possibilities of utilising HiAP within end of life care. In particular this study will look at how the HiAP can be adapted to better integrate end of life care throughout the population.
To investigate HiAP as an intervention
To develop a framework for implementing a HiAP approach to end of life care
To evaluate the possible impacts of changing the manner in which end of life care integrates within England
Location: Room 106 B
Please note: This time-slot contains 4 x 20 minute oral presentations
‘LET’S DO THIS!’: ‘RELEASING’ COMMUNITY CAPACITY
Presented by: Rachel Zammit
An oral presentation detailing our experiences of developing and strengthening sustainable community partnerships in Cheshire, UK
Challenges, successes and key lessons learnt
COLLABORATIVE AND PARTICIPATORY APPROACHES TO BUILDING COMMUNITY CAPACITY
FOR PALLIATIVE AND END OF LIFE CARE
Presented by: Martin Labrie, Harold Pliszka, Emma Buzath
People living in rural and smaller urban areas near Calgary experience difficulty accessing palliative care services which are concentrated in metropolitan areas. The Cumming School of Medicine, Alberta Health Services and community hospice palliative care societies in two rural communities have been working to develop a partnership that incorporates local health system resources and community initiatives in supporting individuals and families living with progressive, life – limiting illnesses. This presentation will provide an understanding of how academic institutions and health services can collaborate with community members to enhance capacity for end of life care, and enrich communities in the process.
COMMUNITY CAPACITY DEVELOPMENT TO ENHANCE HOSPICE PALLIATIVE CARE IN ALBERTA, CANADA COMMUNITIES: EVIDENCE DEMONSTRATING THE VALUE OF A COMMUNITY ENGAGED MODEL
Presented by: Kyle Whitfield, Martin Labrie
Our study explored the value of a community engaged model for good hospice care in three rural communities in Alberta, Canada. When communities are highly engaged in planning and implementing hospice care in their communities, our study discovered that they have key characteristics: that volunteerism needs to be balanced to prevent burnout; that the local knowledge of community members is used in a number of ways to plan and provide good hospice care; that a variety of resources, infrastructure, policies and expertise are used by the community to nurture community-focused palliative care initiatives. The value to the community or social capital, that accrues from these initiatives is not easily appreciated by the community members, and community-based initiatives benefit when this value is identified for them. In all three communities a focus group was conducted separately with the Hospice Society board and with family members and volunteers connected with the Hospice Society. Participants attending this oral presentation will learn how community palliative care is perceived by non-professional community leaders, as well as strategies that may help address barriers that are encountered when communities become engaged in addressing their own hospice and end of life care needs.
COLLABORATIVE MODEL USED TO DEVELOP A RESOURCE GUIDE FOR COMMUNITIES TO ENHANCE THEIR PALLIATIVE AND END OF LIFE CARE: THE CASE OF ALBERTA, CANADA
Presented by: Kyle Whitfield, Eleanor Foster
Collaborative model used to develop a resource guide for communities to enhance their palliative and end of life care: The case of Alberta, Canada
In response to the desire of community organizations in Alberta for information and guidance as they seek to improve palliative and end of life care in their communities, a large number of organizations collaborated to develop a resource guide. In order to achieve this goal, it was first necessary to identify the common information needs of Alberta communities as they pursue their vision for improving local Palliative and End-of-Life Care. A committee comprised of representatives from Alberta Health Services, Alberta Health, Alberta Hospice Palliative Care Association, Hospice Societies, University researchers, Indigenous Health and Palliative Care physicians surveyed numerous community groups and stakeholders about their information needs, and as a result of their feedback several themes were identified which formed the basis of the Resource Guide for Community-based Palliative and End-of-Life Care. This oral presentation will leave participants with a good understanding of how multiple stakeholders can work together to strengthen community-led palliative and end-of-life care, at a provincial level, when there is a common goal.
Location: Room 106 H
Please note: This time-slot contains 4 x 20 minute oral presentations
LIGHTS, CAMERA, ACTION: THE CREATIVE DISSEMINATION OF PALLIATIVE CARE RESEARCH FINDINGS
Presented by: Lisa Williams
Digital media, including the Internet and social media, is a popular conduit for public health information, promotion and education. Statistics from the United States indicate adults regularly search online and use social media to access health information. In addition, social media can reach audiences, such as ethnic minorities and lower socio-economic groups that tend not to access health information by more traditional means. Given digital media’s facility for conveying health information, creating digital content in the form of films could be an effective way to distribute evidence-based palliative care research findings to audiences beyond those typically accessed through journal articles and academic conferences. However, little research exists to support the use of films in such a manner.
The purpose of this presentation is to help address this gap by exploring the opinions of health care professionals’ who evaluated our 28-minute film Farewell, Haere Atu Ra. Farewell dramatises selected research findings from Te Pākeketanga: Living and Dying in Advanced Age. Te Pākeketanga examined the end of life circumstances of Māori and non-Māori people aged 80+ and the experiences of their family caregivers. Amongst the findings we will report on are healthcare professionals’ views about its usefulness for promoting reflection on practice, presenting research findings in a non-traditional manner, prompting discussion about death and dying and implications for Māori. Clips from the film, which uses actors to present the actual, mostly word-for-word accounts of the family caregivers will be shown.
GETTING TO THE GRAPPA, USING FILMS AS ICEBREAKERS IN COMMUNITY ENGAGEMENT, LEARN HOW TO MAKE SIMPLE FILMS FOR USE IN YOUR COMMUNITIES
Presented by: Rebecca Lloyd
When we communicate with our communities we have an opportunity to invoke and create empathy, passion, aid learning and help them help each other. Communicating effectively through the medium of a short films provides;
An effective exchange of information
Forces the presenter to think of the easy explanation to sometimes complex problems
Saves time – a few minutes a film if done well can replace a long explanation
Is Popular: Short Films are increasingly being used as an aid to communicate avoiding ‘death by powerpoint’ long speeches and long explanations. Short films provide a simple clear message
Presenting something visually engaging and artful adds impact to the information, and aids for quicker understanding.
HEALING THROUGH STORYTELLING
Presented by: Vanessa Eldridge
Mythology, mysteries and spirituality lay deep within the Maori culture. Oration, singing and storytelling remain a source of both of delight and solace. ‘Healing Through Storytelling’ is a grief support programme created with Maori and delivered alongside Maori authors. The programme has been running for four years and reminds us that ‘good grieving’ is within cultural practices for Maori, indeed enhancing cultural norms, and valuing our cultures can be good for everyone.
Vanessa Eldridge, Maori Liaison at Mary Potter Hospice in Wellington, Aotearoa New Zealand will share learning gained as the programme evolved. Important to Maori is the concept of ‘nga taonga tuku iho’ (treasures handed down, or, intergenerational knowledge transfer). Cultural knowledge is important for all of us, and this is especially so for colonized indigenous peoples.
Recent years has seen research emerging regarding Māori people’s experience of palliative care – from both Maori and Western lenses. Preserving the concept of ‘mana’, retaining purpose, and promotion of identity is highlighted in the work of Professor Sir Mason Durie and Dr Simon Bennett of Massey University. Cultural support of the older person helps the whole family with bereavement according to Professor Merryn Gott and the Te Arai Team at Auckland University. Death projections to 2068 shows Māori are living longer. Data shared by Professor Heather McLeod reveals that elders will experience rates of frailty and dementia never seen before within this indigenous group.
Mary Potter Hospice is committed to our cultural relevance, and development of best practice for those we serve.
PUBLIC HEALTH BY STEALTH
Presented by: Jessie Williams
What does it take to light a fire to create cultural change about the way we do death, dying and bereavement in Australia? The GroundSwell Project set out to embark on a bold journey to create cultural change in the death and dying space in Australia. For 7 years we have delivered over 55 arts/health projects and have punched well above our weight. What have we learned about change and innovation?
We’ve learned that we had to set up a fiercely independent organisation, drawing on short term funding so that we were never locked into delivering results that perpetuated ‘systemic malaise’. We grew a network of activators across Health and Palliative care, community as well as other non-health related workplaces. We sought to find the right people, likening them to ‘positive outliers’ and engaged their head, heart and hands so they may influence others for a ripple effect. We work well with power or rank, a critical skill when leaning into complex social change. We’ve learned that we must engage leaders not just in health but ALL sectors, institutions, all walks of life….Why not make it possible for any change to be truly ‘social’?
In this presentation, you will glean highlights from a range of our innovations and our approach to leadership, social research and collaboration. You’ll have pause to reflect on how in your current role in the health system, you too can create change, by drawing on non-health specific discourse, using a stronger social lens.
Location: Room 209
Please note: This time-slot contains 3 x 20 minute oral presentations
VOLUNTEER NAVIGATION PARTNERSHIPS: BUILDING COMMUNITY CAPACITY FOR EARLY PALLIATIVE CARE
Presented by: Barbara Pesut
Hospice volunteers have a long and distinguished tradition of providing care for clients dying in the community. With developments in a public health approach to palliative care, many hospice societies are considering how they can engage their communities more meaningfully with the view to making palliative care more accessible. The purpose of this presentation is to present the findings of an innovative program called NCARE (navigating, connecting, accessing, resourcing, engaging) which was designed to increase hospice engagement toward a compassionate community approach to care. Volunteers who were trained in navigation provided supportive services in the home for clients living with advanced chronic illness. Interventions included assisting clients with making supportive connections, identifying and accessing relevant resources, engaging with meaningful activities, and assisting with decision-making. Volunteers were partnered with a nurse navigator who provided oversight and mentoring. An advisory committee made up of stakeholders from health care, social care, and local government provided direction for the project. NCARE was successfully piloted in 2015/2016 and is now being implemented in communities across Canada. Clients who have taken part in the program indicate that it improves their quality of life; volunteers have described the role as satisfying and meaningful. Overall, the intervention has the potential to contribute to the sense of belonging, safety, and support that characterizes the compassionate community.
BEYOND THE SPOTLIGHT: DEVELOPING A PUBLIC HEALTH FRAMEWORK FOR PALLIATIVE CARE VOLUNTEERS
Presented by: Alex Huntir, Linda Hansen
An oral presentation about the research and development behind a statewide framework for palliative care volunteers in NSW that takes a population health approach to proposing public policy for improving the support of people and carers at or near end of life.
INVOLVEMENT OF FORMAL, DIRECT PATIENT CARE VOLUNTEERS IN ORGANISATIONS PROVIDING PALLIATIVE CARE: RESULTS FROM A NATION-WIDE SURVEY
Presented by: Steven Vanderstichelen
Background: Governments expect communities to take up increasing shares of palliative care provision, e.g. through volunteerism. An overview of current volunteer involvement and how organisations view volunteer contributions is therefore crucial to prepare and optimise volunteer integration.
Aim: Describe how involved in the organisation of care formal, direct patient care volunteers are in organisations providing palliative care in Flanders (Belgium) and how these organisations evaluate this involvement.
Method: A postal survey was conducted among organisations providing care for patients with chronic, life-threatening conditions at the end of life in Flanders, Belgium. The sample included every palliative care unit, palliative day care center, multidisciplinary home care support team, medical oncology department, sitting service, volunteer community home care organisation, and a random sample of nursing homes.
Results: Response rate was 79% (N=258). 75% of organisations inform their volunteers about the organisation of care, 35% consult them, 47% take their opinion into account, 15% give them decision rights and 7.5% allow them to make autonomous decisions. Most organisations (74%) rate their volunteers’ involvement as sufficient. 17% indicate their volunteers should be more informed, 18% feel volunteers should be consulted more, however there was low support for more decision rights (6.7%) or autonomous decision making (2.6%).
Conclusion: Care organisations seem generally content with the overall low degree of involvement by direct patient care volunteers. Results suggest potential for more volunteer responsibilities in care organisations, but most organisations are reluctant. Increasing the volunteer contingent, however, might increase their demand for involvement in care organisation.
Location: Theatre Hall 110
Please note: This time-slot contains 4 x 20 minute oral presentations
“INGREDIENTS” OF A CARING COMMUNITY. FINDINGS FROM A PARTICIPATORY RESEARCH PROJECT IN AUSTRIA
Presented by: Patrick Schuchter, Klaus Wegleitner
Background & interest
The project ‘Caring community in living and dying’ in the Tyrolean community Landeck aimed to strengthen networks and solidarity in the community in order to support family caregivers. The whole project lasted three years (2012-2015). In our presentation we focus on findings from the first period (‘survey’) the objective of which was to understand the local care culture with its resources, deficits, and peculiarities. The research questions of the survey were:
– What are important characteristics of the local care culture in its strengths and weaknesses as perceived by our interview partners?
– Which general conclusions can be drawn from our research to understand the elements that build resilient communities and networks in end-of-life care?
Focus groups and individual interviews were carried out with: family carers, hospice volunteers in the region, coordination persons of self-help groups, the local undertaker, the local catholic pastor, the general practitioners of the community, and the ambulatory nursing care team.
Our data analysis and interpretation revealed general categories (dimensions or ‘ingredients’) of a web of care relationships. We interpret these elements as ‘ingredients’ because a) it cannot be determined from the outset who contributes a certain ‘ingredient’ to the care-web, and b) the required ‘dosage’ may differ from case to case. For this reason the ‘ingredients’ are described as abstract entities which come to life through persons (and organisations) in their different roles. These ingredients are: competency, wisdom, keeping each other in mind, access to house and soul, coordination, moderation, freedom from care.
In our contribution we will present findings, discuss the practical relevance and consequences for community development and reorientation of health care services and will briefly point at some conceptual implications for public health approaches in end-of-life care and for care ethics.
MEASURING APPROPRIATENESS AND INAPPROPRIATENESS OF END OF LIFE CARE IN CANCER PATIENTS ON A POPULATION LEVEL USING ROUTINELY COLLECTED DATABASES
Presented by: Robrecht De Schreye
Proportions of patients will receive aggressive curative treatment close to the end of life. To evaluate to what extent end-of-life cancer care is appropriate or inappropriate within a health care system, population-level quality indicators can be used. We previously validated a set of indicators to measure appropriateness of end-of-life care for people with cancer using routinely collected population-level administrative data. The results can be used to support public health policy.
Aim: To measure appropriateness and inappropriateness of end-of-life care in people dying from cancer on a population level.
We link together 7 major Belgian routinely collected administrative databases with full-population information on health care use, cancer diagnostics and social, demographic and socio-economic variables. Indicators of appropriate and inappropriate end-of-life cancer care are calculated for the full population of persons dying of cancer based on an indicator set that has previously been validated using a RAND/UCLA appropriateness method.
Multivariable linear regression analysis is used to examine how the different dimensions of inappropriate or appropriate end-of-life cancer care are associated with diagnostic, social, demographic and socio-economic characteristics of the patient.
Results: In 2012 in Belgium, 26,464 (24.54% of all deaths) people died of cancer.
The extent of inappropriate end-of-life care within the Belgian health care system is measured by 14 indicators. Appropriateness of end-of-life cancer care is measured by 10 indicators.
EVALUATION OF A PALLIATIVE CARE CAPACITY BUILDING PROJECT FOR RURAL MAURITANIA IN WEST AFRICA
Presented by: Alhousseynou Sall
Palliative care capacity in rural communities across Mauritania was reinforced in 2016 and 2017, through the training of community health workers and visits to several of these communities. Over 70 community health workers, selected from across Mauritania were trained in the foundations of palliative care. The three 5-day trainings were interactive, employing a variety of teaching approaches, these included lectures, small group learning and role play. Eight communities were visited, incorporating mentoring of participants, jointly visiting palliative patients, and running community conversation workshops, during which the principles of PC were discussed.
The project was evaluated through the use of participant evaluations, confidence rating scales, pre- and post-training knowledge tests, semi-structured interviews, and focus groups. Over 20 semi-structured interviews were carried out with participants, and nine focus groups with either participants, bereaved relatives or local community leaders. These were audio-recorded and transcribed into French. Thematic analysis was carried out on these transcripts by an international team experienced in social science and anthropology research.
The training was well received by participants, with many hearing about palliative care and holistic care for the first time. It is vital to involve the local community in the implementation of palliative care in the community. A Mauritanian interpretation of palliative care should be established for further incorporation into the health care system.
DEATH LITERACY – DEVELOPING A TOOL TO MEASURE THE SOCIAL IMPACT OF PUBLIC HEALTH INITIATIVES
Presented by: Kerrie Noonan
This presentation provides an overview of the development of the death literacy concept and of our recent research work to develop a death literacy benchmarking tool. This tool will provide a national benchmark of death literacy in the general population, providing a way to measure the social impact of existing and new public health initiatives.