Development of public information and education tools on end-of-life and palliative care
Julien Carretier1,2, Anna Altea1, Thomas Gonçalves1, Sarah Dauchy1,3, Giovanna Marsico1
1Centre National des Soins Palliatifs et de la Fin de Vie, Paris, France; 2Laboratoire Parcours Santé Systémique (P2S), UR4129, Université de Lyon; 3Hôpital Hôtel-Dieu, Paris, France
Background
The Centre National des Soins Palliatifs et de la Fin de Vie helps to analyze the multiplicity of end-of-life situations and produces expert reports. Its mission is to promote access to rights and improve end-of-life care in France by encouraging public dialogue, societal and ethical debate and shared decision-making processes between citizens, patients, families and professionals.
Objectives
Develop educational tools to help users better understand and exercise their rights at the end of life, and provide them with all the information they need. These tools should make it easier to answer their questions throughout their life course, while ensuring that they are adapted to the specific needs of each audience.
Design
Design based on a participatory methodology involving members of expert commission, mirror group (users), scientific and institutional partners specializing from epidemiology, legal data, medical, public health, human and social sciences, and patient representatives. This process of co-constructing evidence-based tools applies to both the content and form.
Methods
For each project, multidisciplinary working groups are led by the National Center, with stakeholders including users to review all the information and ensure that content meets quality criteria. The Centre's team has a wide range of skills in health communication and graphic design to produce appropriate tools (computer graphics, websites, brochures, videos, podcasts, articles, etc.).
Results
We have developed an information portal for all audiences (professionals, patients, relatives) : www.parlons-fin-de-vie.fr, including an interactive map of palliative care services available at the end of life to locate the nearest palliative care facility, a ‘Frequently Asked Questions’ section based on questions from citizens, and various leaflets, infographics, podcasts and reports such as a national atlas of data on palliative care and an overview of active aid in dying around the world.
Conclusion
With its mission of information and education of the public, the National Center contributes to strengthening the knowledge of all citizens on the end of life and palliative care and encouraging the involvement of stakeholders in improving healthcare and socialcare pathways.
Conflicts of interest: none
PalliLEARN: An international collaboration to bring palliative care education to everyone
Mary-Ann Shantz1, Shyla Mills2, Jason Mills3, Patricia Biondo1, Sheila Killoran1, Maril Murray1, Louise Kashuba1
1Covenant Health Palliative Institute, Edmonton, Canada; 2Palliative Care South Australia, Adelaide, Australia; 3Flinders University, Adelaide, Australia
Background: A premise of the Compassionate Communities movement is that everyone has a role to play in supporting the people around them who are seriously ill, dying, caregiving and grieving. Yet many lack the confidence and knowledge to do so. Equipping community members to play an active role during sickness, dying and grief can better support those going through these experiences and reduce the burden on primary caregivers.
Objective: Build community capacity to partner in providing palliative care by developing, adapting and spreading an innovative public education program through local and international collaborations.
Design: Program development and delivery.
Methods: To address a health promotion gap within existing palliative care public education, a series of eight introductory one-hour courses was developed in Australia and delivered by organizational staff to public audiences. A partnership was subsequently formed with an Alberta-based organization that adapted four courses for use in Alberta, Canada. The Alberta adaptation of PalliLEARN relied on advice from a working group of palliative care clinicians and members of community organizations. A train-the-trainer model has subsequently been used to scale and spread the PalliLEARN program in both Australia and Alberta. Facilitators are required to be health professionals with palliative care experience, and to deliver the courses at low or no cost in their communities.
Results: The PalliLEARN public education program has expanded from being offered in one location to being delivered by teams of trained facilitators across Australia and in one Canadian province. Online and onsite courses are being hosted for the public by a range of community organizations, including hospice and palliative care societies, carer organizations, libraries and seniors-serving organizations. Participant evaluations indicate high satisfaction with the course content and facilitation.
Conclusion: Equipping and empowering the public to better understand and partner in providing palliative care is a key component of a public health educational approach and is being accomplished by building bridges at local and international levels. This collaboration provides a promising template for other organizations with similar aims.
Funding: Funding provided by the Australian palliative care peak jurisdictional organisations, Palliative Care Australia and the Government of Alberta.
Harnessing the potential of Massive Open Online Courses (MOOC) for global palliative care education - a scoping review
Danni Collingridge Moore, Natalie Cotterell, Yakubu Salifu, Nancy Preston
International Observatory on End of Life Care, Division of Health Research, Lancaster University, Lancaster, UK
Background: Massive Open Online Courses, or ‘MOOCs’, have gained growing popularity over the last ten years. Capable of an almost universal reach and freely accessible across the world, MOOCs have a huge potential to promote public awareness and engagement in palliative care and facilitate continuing professional development among health professionals. The aim of this scoping review is to identify MOOCs focused on improving knowledge of palliative care, and associated published literature, to further understand the potential of MOOCs in palliative care education.
Methodology: A scoping review approach. Two review questions were identified; firstly, what are the characteristics of MOOCs focused on palliative care, and what literature is available on the development, delivery, and utility of such MOOCs. Eight online databases were searched to identify peer reviewed literature on the topic, which were analysed using narrative synthesis.
Results: Fifteen MOOCs were identified online, of which four were referred to in the twelve peer reviewed papers identified in this review. Seven papers focused on research embedded within the MOOC, two papers focused on MOOC development, two on motivation for participation and knowledge development, and one on using MOOCs for research dissemination and the development of recommendations for practice in palliative care.
Conclusion: MOOCs have immense value to palliative care education in terms of accessibility, flexibility, and cost, with a clear potential to reach a global audience of both the public and health care professionals. Further empirical research is needed to explore embedding research into MOOCs, developing content specific to the needs of health professionals and how to further utilize the opportunities for palliative care education that MOOCs present.
Co-developing community end of life choices education: Assessing and responding to death literacy and assisted dying learning needs.
Michael Chapman1,2, Kain Ping Tan1,2, Nathan Emmerich2, Jennifer Philip3, Jennifer Tieman4, Brett Scholz2, Aileen Collier4, Linda Powell1, Imogen Mitchell1, Kerrie Noonan5
1Canberra Health Services, Australia; 2Australian National University, Australia; 3Melbourne University, Australia; 4Flinders University, Australia; 5La Trobe University, Australia
Background: The Australian Capital Territory (ACT) has legislated to enable access to voluntary assisted dying (VAD) in 2025. In preparation, this multiphase project to explore community attitudes and learning needs relating to death literacy and VAD and develop resources to meet them began in late 2023. VAD attitudes are influenced by community members beliefs and emotions which may impact learning needs. Thus, to be effective education will need to address a variety of needs beyond knowledge alone. VAD is also only one type of end-of-life choice, and public education programs need to account for broader understandings of what is needed and valued at the end of life including death literacy. To ensure equity, appropriateness and access education will need to take account of the needs of underserved populations and be developed in partnership with the community.
Objectives: Phase one of this multi-phase project seeks to explore and document death literacy including VAD knowledge and attitudes, within the ACT community, including underserved populations e.g. those with socioeconomic deprivation, disabilities, first nations peoples or from culturally and linguistically diverse backgrounds, and those with advanced illness and/ or those caring for them.
Design: Triangulated mixed methods design using concurrent quantitative and qualitative methods.
Methods: After initial co-development, data was accrued from three populations of general residents, underserved populations and people with an advanced illness and their carers. Quantitative analysis of: the death literacy index (DLI) completed online by a representative sample of ACT residents and supplemented with purposive sampling of the other two target populations utilising descriptive statistics; a survey analysing a tripartite model of attitudes relating to VAD completed by the same populations utilising the generalised linear mixed model. Qualitative thematic analysis of verbal data from a purposive sample of participants from these three populations responding to discussion of death literacy and exploration of attitudes and needs relating to VAD and end of life care.
Results: Quantitative and qualitative results as described will be presented.
Conclusion: Introducing VAD provides an opportunity for communities to reevaluate their approach to end of life choices and to develop and renew the knowledge and resources they have available at the end of life.
LAUT: Last Aid at the workplace as a sensitive approach to death and grief
Georg Bollig1,2, Karin Ohler1, Alina Kasdorf1, Golrokh Esmaili1, Helena Kukla1, Raymond Voltz1, Julia Strupp1
1University of Cologne, Faculty of Medicine and University Hospital, Department of Palliative Medicine, Germany; 2Department of Anesthesiology, Intensive Care, Palliative Medicine and Pain Therapy, Helios Klinikum Schleswig, Germany
Background
The number of deaths in Germany in 2023 was 1.02 million, of which around 50% are of working age. Statistically, everyone is likely to be confronted with the effects of death, bereavement and mourning at some point in their career. Dealing with death and bereavement can impact workplace well-being and productivity. However, individuals affected by the effects of death, bereavement and grief often lack necessary workplace accommodation, such as reduced working hours, and emotional support and compassion from employers and colleagues. Last-aid providers in the workplace serve as direct contacts and integrate conversations about death, dying and grief as a normal part of everyday working life. The aim of the LAUT project is to develop a framework of implementing last-aid provider workers at the workplace.
Methods
(1) In a representative online panel survey (Germany-wide), managers and employees (n=1000) will be asked about their experiences with dying, death and grief in the workplace. Needs for changes in dealing with dying, death and grief are recorded. (2) After the training of last-aid the content of the training will be evaluated with regard to its application in the workplace using questionnaires. (3) Focus group interviews with trained end-of-life caregivers will be used to gather ideas for the reorganisation of content and possible implementation of last-aid providers.
Results The project will run from 01/10/2023 to 31/12/2025. Results are pending.
Discussion
Last-aid providers could relieve people in the workplace in dealing with dying, death and grief and thus make a contribution to social capital. They provide emotional and practical support, access to open dialogue about burden and grief and create spaces for mourning.
The results of this project can be used to develop important recommendations for action for companies and organisations. The implementation of last aid providers in the workplace can be a promising approach to sensitively support people in burdensome situations at work. The more employees and managers know about the theoretical background, the better they can provide appropriate support.
Practical implementation:
It is important to investigate the long-term benefits of last-aid providers at the workplace. The implementation of last-aid providers can serve as a resource for increased well-being, an open communication culture and as motivation for developing guidelines for dealing with dying, death and grief in the workplace.
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