PHPCI Newsletter | Issue 8 | January 2024

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FROM THE PRESIDENT

On behalf of the PHPCI Council, I send you my best wishes for 2024 and look forward to meeting many of you in the new year. In the previous months a smooth transition took place within PHPCI from the previous leadership (Dr John Rosenberg) and council to the new president and council. I want to thank all outgoing members of the council for the hard work and achievements they have been delivering over the last years and I am warmly welcoming all new incoming members of the council.

The new council has the intention to reach out to all of you more in the years to come. Many challenges are on the horizon and PHPCI need to be ready to manage these challenges well. Public health palliative care ideas and initiatives are spreading rapidly around the world and as an international organisation we want to showcase and support these ideas and initiatives. All these initiatives can be very inspiring for others, and we need to capitalise on this. We have to improve to get our messages across and for that purpose we could collaborate better than ever. We have to improve our collaboration internally and externally. We can reach out more to other palliative care associations and with that purpose we have invited the International Association of Hospice and Palliative Care (IAHPC), the World Hospice and Palliative Care Alliance (WHPCA) and the Public Health Reference Group of the European Association for Palliative Care (EAPC) to our council meetings. It is only when we join together with others, that we can increase our impact on communities, services and policies, including on the policies of national governments, regional and global organisations (e.g. the WHO).

Of course this year will be building up towards our major event, our next PHPCI8 world congress “Building bridges between science and people” that will be taking place from October 22nd to October 25th in Bern, the capital of Switzerland. The organising committee and the scientific committee are working hard to prepare for an exciting scientific programme, a city programme and the Public Health Palliative Care Academy. The latter is taking place before the official conference.

The scientific conference integrates three thematic threads. The main focus of the conference is on projects in research & education from all around the world. Further, a program for the exchange of experiences from compassionate cities in German-speaking countries (Germany, Austria, Switzerland) is planned. A third thread focuses on the development of compassionate cities within Switzerland inspired by international projects (these sessions will be translated French/German). During the conference week 22 – 25 October 2024, several activities and events will be held in the City of Bern, in collaboration with the Compassionate City «Bärn treit».

The PHPCI Academy (previously summer school) will take place 18-20 October 2024 in Münchenwiler, close to Bern. Given the success of and lessons learned from the Summer School held prior to the PHPCI conference in Brugge in 2022, a 3-day PHPCI Academy will take place prior to the conference in Bern. The purpose of the Academy is to bring together international experts and junior researchers (potential or present doctoral students, post-docs) of different disciplines active in the field of public health palliative care to share their varied experience in a constructive and innovative atmosphere of knowledge exchange. The goal is to improve present and future research, as well as derive emerging topics and methods to benefit research and education in the field.

Be aware that the extended deadline for abstract submission is fast approaching, for both events it is February 11th 2024.

Let me finish by acknowledging the many people – members and allies of PHPCI alike – who contribute their time and energy to advancing the ideas and goals of PHPCI. I look forward to the continued growth of this important work and the increasing influence of the Association in global and local settings.

Best wishes,

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Upcoming Events & Opportunities

8th Public Health Palliative Care International Conference Bern, Switzerland. Abstract submission deadline 11th February 2024!

The 8th Public Health Palliative Care International Conference in the beautiful city of Bern, Switzerland is shaping up to be an amazing event. The conference and accompanying City Festival will run between 22nd and 25th October 2024, with the PHPCI Academy scheduled for 18th to 20th October 2024. Registrations are now open via the Conference Website Registration Portal.

The conference is set to host a diverse lineup of experts from around the globe, representing each continent. Here's a sneak peek into some of the engaging sessions:

• Compassion in Clinical Care: Jason Mills (Australia) and Phil Larkin (Switzerland)

• Death Literacy Discussion: Joachim Cohen (Belgium), Carol Tishelman (UK) and Ekkapop Sittwantana (Thailand)

• End of Life in Marginalized Populations: Farzana Khan (Bangladesh) and Kelli Stajduhar (Canada)

• Bereavement Companionship Programs: Saif Muhammad (India) and Libby Sallnow (UK)

• Global Compassion Policy Summit: Christian Ntizimira (Rwanda) and Klaus Wegleitner (Austria)

• Compassionate Cities International: Vilma Tipodoro (Argentina), Allan Kellehear (UK), and Steffen Eychmueller (Switzerland)

Please note that the abstract deadline for the conference is nearing, with the extended due date being 11th February 2024. You can find out more about the abstract submission process and submit your abstract by clicking here.

You can find out more about the fabulous conference events and program by visiting the PHPCI 2024 Conference Webpage (click here).

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Public Health Palliative Care Academy

The EAPC Reference Group on Public Health & Palliative Care will host the 2nd Public Health Palliative Care Academy between 18th – 20th of October 2024 in Münchenwiler, near Bern, Switzerland. The event will be hosted by University Center for Palliative Care, Bern, Switzerland.

• explore groundbreaking theoretical frameworks and concepts shaping public health palliative care with Luc Deliens (Belgium) and Libby Sallnow (UK)

• uncover the transformative potential of community-based participatory action research with Carol Tishelman (UK)

• navigate the intricacies of evaluating complex programs within public health palliative care with Valentina González-Jaramillo- (Switzerland) and Guy Peryer (UK)

• examine the art and science of questionnaire and survey design with Joachim Cohen (Belgium)

Junior or early career postdoc researchers are invited to submit a summary abstract about a research challenge experienced in their ongoing projects or projects in planning. Abstracts can be submitted by clicking here.

You can find out more information about the 2024 PHPCI Academy by clicking here.

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Celebrating the work of early career PHPCI researchers

Public Health Palliative Care International are seeking to nurture interest, support and connections among early career public health palliative care researchers throughout the world. One of the ways in which we hope to achieve this is by using our newsletter and social media platforms to showcase and celebrate research among early career researchers to assist them in gaining support with and exposure for their work. We would love to showcase the ideas, experiences and progress of early career researchers' studies across the research journey, from planning and conception to completion. This initiative is being led by Dr Guy Peryer and Dr Max Kleijberg (pictured below ) who hold the Research and Early Career Research representative positions on the PHPCI Council. We would be keen to hear from early career researchers who are interested in being involved in this initiative.

Showcasing Public Health Palliative Care:

Cultivating awareness for serious illness, death, and bereavement through a ‘Compassionate Week’ at Vrije Universiteit Brussel (VUB)

Hanne Bakelants

We all face grief, loss, or serious illness at some point in our lives. That's why, in 2019, the Vrije Universiteit Brussel (VUB) signed a declaration of intent to become a 'Compassionate University.' This official commitment underscores the university’s dedication to make everyone within the university community aware of the importance of support and compassion during times of serious illness, death, dying and loss. To put this commitment into action, the university organized the first ‘Compassionate Week’ in November, aiming to foster openness about serious illness, death, and bereavement through various activities.

From November 13 to 16, 2023, the Vrije Universiteit Brussel (VUB), organized the first Compassionate Week at its main campus in Brussels, Belgium. This week was entirely dedicated to solace, connection, and compassion. Various activities took place, including seminars, a Compassionate Walk, a Compassionate Café, a literature night, a poetry club, a grief studio, and more. The complete program is available here.

It was a heartwarming week that brough the university community closer. To provide a glimpse, we can highlight three noteworthy activities. The first, the Compassionate Café, organized on Tuesday evening in collaboration with a local organization ‘Missing You’, hosted at bar PILAR, a popular student spot. The café opened with a poignant narrative shared by a student about her personal journey through loss. Following this, students explored diverse perspectives on these significant themes, utilizing conversation cards categorized into three themes i) Before I Die, ii) Compassion and Care, iii) Loss, Grief, and Death.

On Wednesday evening, “Voices of Compassion: An Evening of Mourning and Healing” unfolded, organized by a dedicated group of students and staff from the Languages & Linguistics department. The poetry evening showcased students courageously taking the stage, presenting their work or that of others, delving into the themes of dying, death, and grief. Initially, hesitant, but strengthened by the supportive presence of a full room, they shared their stories. The evening fostered a sense of solidarity, serving as a comforting reminder that “one is not alone in their grief”.

The Compassionate Week ended with the yearly remembrance moment, the ‘Moment of Comfort’. Notably, this year the remembrance moment was marked by the opening of the permanent Before I Die Wall on the campus. The very first Before I Die Wall was created on an abandoned building in New Orleans by artist Candy Chang after the death of someone she loved. Since then, it has been replicated in many cities, from New York to Budapest and Bangkok. Now, it has also found a place in Brussels, at the VUB.

PHPC Tools and Resources

A collection of resources can be found on the PHPCI website, including toolkits, reports events, useful websites to name a few.

Website: https://www.phpci.org/tools

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Recently Released Resources!

Evaluation Resource: Compassionate Communities Evaluation Guide

The Evaluation Guide supports Compassionate Communities in measuring the impact of their initiatives, sharing learning outcomes and results, and facilitating discussions that translate knowledge into action.

The Evaluation Guide was developed by the Pan-Canadian Compassionate Community Evaluation Project, a collaborative effort between BC Centre for Palliative Care, Hospice Palliative Care Ontario, and Pallium Canada.

The Compassionate Communities Evaluation Guide empowers Compassionate Communities in their mission to improve experiences related to serious illness, caregiving, dying, and grieving.

The Guide helps users evaluate an individual activity, a project or a program with their Compassionate Community initiative. Specifically, this guide will support users as they design their evaluation plan and data collection, providing a solid foundation for impactful, compassionate initiatives across Canada.

A request to access the Compassionate Communities Evaluation Guide can be submitted by clicking here.

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Webinar Recording: Compassionate Communities Evaluation Guide – Let’s Work through Examples

This session was led by the Pan-Canadian Compassionate Communities Evaluation Project Team, who demonstrated how the newly released Compassionate Communities Evaluation Guide can be utilized.

During the session, participants saw examples of how the guide will help to create an evaluation plan and support its implementation. Participants gained a better understanding of this free resource and how to use it to support the data collection and understand the impact of their Compassionate Community work.

VCSE organisations can face considerable funding pressures and resource limitations. Many struggle to collect and present data that demonstrate the impact of their services. CAVEAT was developed to address this need. The toolkit can be used by charities, community, voluntary and social enterprise organisations, and faith groups to demonstrate their impact. Funding bodies or service commissioners can also use the toolkit to assist them in identifying outcomes to support on-going quality monitoring.

CAVEAT is funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration, Kent, Surrey and Sussex (ARC KSS).

You can find out more about the CAVEAT resource by visiting the CAVEAT webpage or watch a video introducing the toolkit and explaining its use here.

To register for access to the toolkit click here.

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Recent Publications

Bakelants, H., Van Droogenbroeck, F., Chambaere, K., Vanderstichelen, S., De Donder, L., Deliens, L., De Gieter, S., De Moortel, D., Cohen, J., & Dury, S. (2023). A compassionate university for serious illness, death, and bereavement: Qualitative study of student and staff experiences and support needs. Death Studies, ahead-of-print(ahead-of-print), 1–12. https://doi.org/10.1080/07481187.2023.2233495

D’Eer, L., Chambaere, K., Van den Block, L., Dury, S., Sallnow, L., Deliens, L., Smets, T., & Cohen, J. (2023). How compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss. Death Studies, 1–10. https://doi.org/10.1080/07481187.2023.2283449

Dóci, E., Spruyt, B., De Moortel, D., Vanroelen, C., & Hofmans, J. (2023). In Search of the Social in Psychological Capital: Integrating Psychological Capital into a Broader Capital Framework. Review of General Psychology, 27(3), 336–350. https://doi.org/10.1177/10892680231158791

Quintiens, B., Smets, T., Chambaere, K., Van den Block, L., Deliens, L., Sallnow, L., & Cohen, J. (2023). Discomfort With Suffering and Dying, a Cross-Sectional Survey of the General Public. Journal of Pain and Symptom Management, 66(5), 529-540.e6. https://doi.org/10.1016/j.jpainsymman.2023.07.003

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Journal | Palliative Care and Social Practice

PHPCI has its own academic journal Palliative Care and Social Practice

The primary purpose of this peer-reviewed, open access journal is to raise the research and policy profile of a social model of palliative care. It encourages scholarly articles that challenge current discourse about the process of death, its current care models and practices, and of grief and bereavement. The journal welcomes articles from symptom science, clinical practice, and health services research. However, its aim is also to publish cutting-edge research from the realm of social practice - from public health theory and practice, social medicine, and social work, to social sciences related to dying and its care, as well as policy analysis, criticism, and cultural studies. The journal welcomes reports from work with under-represented groups, community development, and studies of civic engagement in end-of-life issues. The journal accepts a broad range of methodological designs – from trials to ethnography to analysis of existing sources.

The journal is supported by an international editorial board and is a member of Committee on Publication Ethics (COPE). All articles are listed on PubMed, PMC and Scopus, and are freely available to read and download.

Any general inquiries about the journal or about prospective submissions for our journal can be directed in the first instance to The Managing Editor, Georgia Patey – SAGE Publications Ltd, London, UK georgia.patey@sagepub.co.uk

View the submission guidelines for details on the submission process, article processing charge and formatting your manuscript.

From PHPCI Council

On behalf of the PHPCI council, we extend good wishes for the coming months, and we look forward to seeing many of you at upcoming PHPCI events!

Full members

• President - Prof Luc Deliens (Belgium).

• Vice President - Dr Kerrie Noonan (Australia)

• General Secretary - Wendy Gain (Australia).

• Treasurer - Dr Emma Hodges (UK).

• Membership Secretary - Bonnie Tompkins (Canada).

• General Member - Dr Daniel Lowrie (Australia).

• General Member - Dr Guy Peryer (UK).

• General Member - Dr Max Kleijberg (Sweden).

• General Member - Dr Esther Nafula (Kenya).

• General Member - Elizabeth Johnson (USA).

Ex officio members

• Journal Representative - Prof Allan Kellehear

• EAPC PHPC Representative - Dr Steven Vanderstichelen

• IAHPC Representative - Dr Natalie Greaves

• WHPCA Representative - Dr Stephen Connor

• Conference Representative - Prof Steffen Eychmüller

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Social media

For questions and inquiries please visit our PHPCI website, by clicking here.

For Facebook - click here

For X - click here

For Linkedin - click here

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Would you like to contribute to the PHPCI Newsletter?

We would love to hear about your Public Health Palliative Care Project! Please send your experiences, stories, events or resources to be included in forthcoming Newsletters to Daniel Lowrie at daniel.lowrie@jcu.edu.au.

We are also looking for regional partners to act as co-editors in assisting us in identifying and sourcing stories of public health palliative care initiatives that can be shared and celebrated in this newsletter. If you would like to take on this role, please get in touch with Daniel Lowrie, using the email address above.

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Editorial Team

Daniel Lowrie thanks the PHPCI Council for assistance with the development of this newsletter. Thank you also to all article contributors for sharing your resources, ideas and practice examples.

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