The #EAPC2022 12th World Research Congress is nearly here!

There are just 9 days to go to #EAPC2022. The EAPC 12th World Research Congress Online has live sessions on 18 to 20 May 2022, and lots of on-demand content – as well as a series of webinars open to everyone (two before the Congress even starts)!  There’s still time to register – and here’s a sneak peek about what you can look forward to…

Open access, free to attend webinars.

We’re pleased to be hosting five webinars before and during the EAPC World Research Congress. You are invited to attend these webinars even if you have not registered for the congress.  On Tuesday 17th May, Joan Marston and Christoph Ostgathe host a webinar on Palliative Care in a Humanitarian Crisis which looks at what we can learn from past and current crises about providing palliative care in challenging circumstances. Also on the 17th May, Sheila Payne and Richard Harding chair a meeting about palliative care EU funded projects including details of five projects that were funded through the recent Horizon Europe call.

On Wednesday 18th May, a session aimed at novice and early researchers entitled ‘Everything you wanted to know about research but were afraid to ask’ has been organised by the EAPC Research Network Junior Forum and aims to inform and inspire the next generation of palliative care researchers. On Thursday 19th May, Augusto Caraceni, Katie Jones and Brenda Dyal present on Critical issues in Opioid Analgesia and on Friday 20th May, Jeroen Hasselaar and Lukas Radbruch present the findings of a recent European Delphi study about ‘Palliative Sedation: How much consensus is there in Europe?’.

An exciting #EAPC2022 programme!

We have such a great line up to announce!  On Wednesday 18th May to Friday 20th May 2022, we are delighted to be joined by speakers from twenty-two countries globally including Europe, Australia, Japan, Canada, US, India, Malawi. Singapore and Uganda, showcasing palliative care from around the world.  Registering for the congress provides full access to the congress platform which includes:

  • Four plenary lectures – Holly Prigerson, Joachim Cohen, Julia Downing and Eve Namisango
  • Two Award lectures – David Currow and Catherine Walshe
  • Four themed sessions focusing on key issues in palliative care research
  • Thirteen Oral Abstract sessions
  • Four EAPC Research Awards
  • Palliative Medicine and Journal of Palliative Medicine Paper of the Year awards
  • Online Networking opportunities
  • Pre-recorded content
  • 226 ePosters.

And to ensure you can enjoy as much of the content as possible, the pre-recorded presentations and the e-posters are now available for registered delegates to view and will remain available until 30th September 2023. The FAQ’s page contains more info, together with details of the congress accreditation.  If you have already registered, keep an eye on your in-box for details of how to access the platform.

We are proud to say that #EAPC2022 features some of the leading researchers and practitioners in the world of palliative and end-of-life care. The Congress programme is now available online.

We look forward to welcoming you to the EAPC 12th World Research Congress Online! 

WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

  • REGISTER
  • FOLLOW @EAPCvzw #EAPC2022.
  • Sign up to the EAPC blog to hear more about the Congress.
  • Read all the congress presentations and posters in the Book of Abstracts for the EAPC 12th World Research Congress Online, to be published by Palliative Medicine.
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Let the children and young people speak! Part 1.

There are just 14 days to go to #EAPC2022! The 12th World Research Congress Online of the European Association for Palliative Care (EAPC) has live sessions on 18 to 20 May 2022, and lots of on-demand content.  Today, we are pleased to welcome Eve Namisango from the African Palliative Care Association to give us a sneak peek into her plenary lecture and to tell us more about why children and young people must be at the centre of palliative care research.  This is the first of two blogs from Eve and the theme for this blog is informed consent and the engagement of healthcare workers.


Dr Eve Namisango.

Over 21 million children and young people worldwide could benefit from palliative care each year, yet many may not receive it. The care that these children receive must be person-centered and underpinned by robust evidence, which makes it important to involve the child and reduce reliance on proxy reporting (asking parents and carers for the views of children and young people) whenever possible. That said, involving children and young people in palliative care research can be challenging. In these blogs and in my plenary lecture, I will discuss some of the common challenges and propose solutions based on my own experiences in conducting pediatric palliative care research with children in Uganda, Kenya, Namibia, South Africa and those shared by researchers from Belgium, the United Kingdom (U.K.) and the Middle East.

One of the most common challenges is gatekeeping by health workers at clinical sites. For example, health workers may be concerned that the children and young people are too ill to participate in research, so they may not be referred to research teams to receive information about the study and make an informed decision if they would like to participate or not.  This leads to exclusion of certain categories of children and young people, and some conditions, in research, especially the children and young people who are most ill. We have found that the way around this is to provide information about the study to the health workers and to explain that children and young people and caregivers can be empowered to make an informed decision regarding whether to participate or not.  It can help to build up the trust of healthcare workers by reassuring them that there are terms and conditions for children and young people’s participation by the ethics regulators or administrators at the clinical sites. Gentle engagement such as sharing updates regarding planned and on-going studies can help to create more awareness about the study and encourage recruitment.

There are ways to ensure children and young people have all they need to make an informed decision about participation.  One of these ways is to provide age-appropriate informed consent forms. This makes it easy for children and young people to read and understand the content and hence make decisions. It is also helpful to give children forty-eight hours to internalise the information and decide if they want to take part, as sometimes the information is too much to digest in one go. Having these two meetings – introducing the research and then meeting 48 hours later – enables areas of concern and questions to emerge, enabling children and young people and teams to have open discussions and then agree on the way forward. Besides engaging with the health workers, we should also cooperate with the caregivers as their role in guiding the children through the consent process is key. Sometimes, I have engaged a mental health worker to conduct mini-cognitive tests before enrolling children, and I found it helpful as some were excluded because they did not have the ability to comprehend the information provided in the consent form and use it to make an informed decision regarding participation. In my experience working with a disability support person is also useful. She easily identified children with hearing impairments through play and short stories and she advised me to speak much louder during our interview sessions.

All children and young people receiving palliative care deserve the best care, treatment and experience possible, and research is essential to this.  In my next blog I will look at developmental age, how to engage with children and young people and cultural sensitivity.

My thanks to the following people who shared useful experiences from their work: Marie Friedel, Lucy Coombes, Sema Yurduşen, Waleed Alrjoob, Debbie Braybrook, Stephen Marshall, Ghadeer Al-arja, Anna Roach, Sabah Boufkhed and Richard Harding.

photo credit: Kawempe Home Care.

Join Dr. Eve Namisango at #EAPC2022. On Friday 20th May 2022, Eve will give the Paediatric Palliative Care Plenary ‘Best Practices for Involving Children and Young People in Palliative Care Research’. Find out more about the Congress here.

Links and resources

About the author

Eve Namisango is Programmes, Research and Development Manager at the African Palliative Care Association. She holds masters and PhD degrees in palliative care from Cicely Saunders Institute, King’s College London.She also practices child life support, grief and bereavement support in communities. This blog is largely based on her research experience on interviewing children with HIV in Uganda and South Africa about their psychosocial needs and her PhD project research on outcome measurement in children with life limiting and life-threatening conditions which involved engaging children in research, using person-centred outcome measures and in result dissemination. Twitter: @EveNamisango; ORCID: 0000-0001-5032-4714.


WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

Posted in CHILDREN'S PALLIATIVE CARE, EAPC 12th World Research Congresss, RESEARCH | Tagged , | Leave a comment

Hearing the voice of children and young people – strengthening children’s palliative care research.

There are just 17 days to go to #EAPC2022! The 12th World Research Congress Online of the European Association for Palliative Care (EAPC) has live sessions on 18 to 20 May 2022, and lots of on-demand content.  Today, we are pleased to welcome Professor Julia Downing to give us a sneak peek into her plenary lecture and to tell us more about children’s palliative care research and how it can make a real difference to those who need these services.  Julia is Chief Executive of the International Children’s Palliative Care Network (ICPCN).


Professor Julia Downing

I have often been asked whether I think it is ethical to do research in the field of children’s and young people’s palliative care. How would you respond to that? For me, the response is whether it is ethical not to do research (1). If we are to reduce suffering and improve quality of life, then we must continually seek the best way of doing this.

It has been encouraging to see how the evidence in the field of children and young people’s palliative care is growing, yet how do we make sure we continue to see developments in the field? How can we hear from children and their families about what matters to them? I don’t have all the answers, but for the #EAPC2022 lecture, I will discuss some of the goals, challenges and lessons learnt from my experience in a range of countries and in working with colleagues from around the world, learning from them, gaining their insights, and most importantly learning from the children and young people who we care for.

I had a teacher early in my career. SY was a 13-year-old Turkish girl with cancer who I cared for over thirty years ago. At that time children such as SY were not involved in shared decision making, she was just told what treatment she would be getting. She was receiving care in the UK, and was separated from her friends, brothers and sisters. SY knew she had cancer and whilst at first, we spoke through a translator, SY was quick to pick up English and soon we were able to have long conversations about life in Turkey, her family, her hopes and fears for the future. Her tumour was aggressive and when it was clear that no more treatment was going to help, she went back to Turkey, where she died at home surrounded by her family. I was keen to learn more how I could care for children such as SY – how could I make sure that they were more informed about their treatment and prognosis, and could they be more involved in decision making? I remember being struck by how little research there was, how little evidence there was for us to follow, and how keen SY was to tell us what was important to her. She taught me so much, and even now, I often think about what was important to her and her family.

The future of children’s palliative care research is exciting – multi-country, multi-disciplinary collaborative research studies are being developed and undertaken, with children and young people at the centre of the research. Recent experiencing of working with young adults with palliative care needs as co-researchers during the covid pandemic has been enriching, not only to the study, but to all of us as researchers, and it is an important development as we move forward in the field.  This was such a change from thirty years ago when I cared for SY. She had no say in what was happening to her and her voice was not heard. The culture change since then has been exciting to see, with children and young people, and their parents/carers being involved not only in shared decision making but also in designing and implementing research. However, this is not always the case. We need to continue to influence the culture, to ensure ethics committees and researchers understand the importance of involving children and young people in research, and make sure that this becomes standard practice. The generation and utilisation of evidence is an integral part of all that we do within children’s and young people’s palliative care so that we can improve access, reduce suffering, improve patient and family experience and increase quality of life.  

Join Professor Julia Downing at #EAPC2022. On Friday 20th May 2022, Julia will give the Paediatric Palliative Care Plenary ‘Children’s Palliative Care Research – Goals, Challenges, Lessons Learnt and the Future’ at the EAPC 12th World Research Congress Online. Find out more about the Congress here.

Reference

  1. Downing J. (2016) Editorial: ‘To research or not to research – An important question in paediatric palliative care’. Palliative Medicine 30(10) 902-903.

Links and resources

About the author

Professor Downing is an experienced palliative care nurse, educationalist and researcher. She is the Chief Executive of the International Children’s Palliative Care Network (ICPCN) and Professor at universities in Uganda, Serbia and the United Kingdom. She has worked within palliative care for over thirty years, with more than twenty of those working internationally in Uganda, Africa, Eastern Europe and globally. Professor Downing serves on the Boards of several non-governmental organisations and she is an Advisor to the International Association of Hospice and Palliative Care. She is also part of the steering group for the EAPC Children’s Palliative Care task force. Twitter: @julia_downing


WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

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It takes two to tango: Sexual health and closeness in couples coping with advanced cancer.

WE’RE DELIGHTED TO PRESENT THIS MONTH’S EDITOR’S CHOICE FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC.

Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in Palliative Medicine – EAPC members can access a FREE copy from the EAPC website.

Janneke van Roij introduces the background to the longer article selected as ‘Editor’s Choice’ in the April 2022 issue of Palliative Medicine. Janneke is a Psychologist and researcher with the Netherlands Comprehensive Cancer Organisation (IKNL).


Photo of Janneke van Roij
Janneke van Roij

For me, feeling connected to my partner is most important to me. Especially when times are rough, my partner and I tend to look out for each other by providing emotional support. I can only imagine how patients with advanced cancer may find comfort and support in their connection with their partner. The advanced cancer diagnosis often comes with feelings of uncertainty and even anxiety as the perspective on life changes as death comes into play. Feeling connected to my partner provides me with comfort as it gives the feeling of not being alone but being in it together. It provides strength by the knowledge of being able to carry the burden together.

We are all born with an innate need to feel connected to one another. Sexual health can play an important role in feeling connected to one’s partner. Physical contact gives us a good feeling, for instance because it enhances the release of ‘happy hormones’ and lowers our blood pressure. The act of sex will stimulate processes that makes us feel connected to the other person. However, with advanced cancer, sexual health may become affected as the cancer and its treatment may create sexual dysfunction or sexual problems (for example, feeling less attractive, feeling distressed etc.).

While the partner of patients with advanced cancer obviously plays an important role in the emotional connection and sexual health, they are not always included in research. Studies on sexual health that include couples coping with advanced cancer are even more scarce. In our recent article published in Palliative Medicine, we report on findings from the eQuiPe study, an observational multicenter study about the sexual health and connectedness in 566 couples coping with advanced cancer in the Netherlands.

We were happy to find that most patients with advanced cancer and their partners felt connected to each other in our study. We also found that around half of all patients (male and female) are interested in sex. Of these, male partners experience more interest in sex (73%) compared to females (50%). We found that 25% of the patients and one third of all partners were not satisfied with their sex life but it is not known whether this was the case before the cancer diagnosis. Moreover, about one third of all patients and partners reported sexual problems or problems in their relationship but only a few (<10%) sought professional advice for these problems.

As expected, we found that satisfaction with sex life was related to feelings of connectedness in couples, especially for partners. Satisfaction of the other person in the relationship was also related to own feelings of connectedness. These results suggest that the opinion of the other person in the relationship matters for one’s own feelings of connectedness in the relationship. It really does takes two to tango.

Our study suggests that sexual health is an important topic to discuss with couples coping with advanced cancer. Healthcare professionals caring for people with advanced cancer should be aware that sexual health is for many people an integral part of quality of life, including for people in poor health. Sexual health should be a routine part of clinicians’ assessments of their patients.  It is important to explore both the patient and partner perspectives on sexual health because their experiences regarding sexual health impact each other and they are both the focus of palliative care. When discussing sexual health, it is crucial that health care professionals are aware that sexual activity may change due to advanced cancer and alternative ways to adjust to these changes may be beneficial for couples to feel close to each other while dealing with advanced cancer. Besides the sexual act, it is also important for healthcare professionals to discuss alternative ways to regain and foster connectedness in the relationship. Especially male partners deserve attention from health care professionals as they experience most sexual problems but often do not seek support.

Our study has shown that connection is important between those with an advanced cancer diagnosis and their partners, and sexual health is an element which can support this connection.

READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’

This post relates to the longer article “Sexual health and closeness in couples coping with advanced cancer: results of a multicenter observational study (eQuiPe),” by Janneke van Roij, Natasja Raijmakers, Anna Thit Johnsen, Maiken Bang Hansen, Martine Thijs-Visser and Lonneke van de Poll-Franse. Issue published: Volume 36; issue 4; April 2022 https://doi.org/10.1177/02692163221074541 

Links and resources

  • Netherlands Cancer Registry: “Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)” is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. Find out more here
  • Read more about the eQuiPe study on Palliaweb and here.

About the author

Janneke van Roij is a psychologist and works as a researcher at the Netherlands Comprehensive Cancer Organisation (IKNL). She recently finished her PhD study on quality of care and life in patients with advanced cancer and their relatives (the eQuiPe study). She will defend her PhD thesis “In it together: a dyadic approach to care experiences and quality of life of patients with advanced cancer and their loved ones” in May 2022 at Tilburg University, the Netherlands.

EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE

If you are currently an Individual or Associate EAPC Member, you have full access to the Members Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s Choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2022.

Join, or renew your membership here. Members of our national associations can join the EAPC for free.


WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

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How to make a Delphi expert consultation fly!

Jenny van der Steen and Ida Korfage, chairs of the EAPC Task Force on Advance Care Planning in Dementia, which is a joint venture of two previous EAPC task forces, explain more.


Pictures of Ida Korfage, Brenda Schakenbos and Jenny van der Steen.
Ida Korfage, Brenda Schakenbos and Jenny van der Steen.

Advance care planning can be seen as a complex activity. So is involving persons with dementia in this process … but anyone can see that it may be wise to do this-or attempt it-before capacity limits an individual’s active role. Our Task Force has set ourselves the challenge to provide good guidance on this topic, in the hope that people with dementia, their relatives and their healthcare providers will benefit.

Our first task was to design and develop a Delphi study. A Delphi study involves a process of arriving at a group decision by asking specific questions to a group of experts, over a series of rounds. We have spent many weekend days working on this.  The work included analysing input from the panel of experts in practice and research on advance care planning and dementia, developing revised content and feedback for the next round, testing the survey, sending reminders and more. We decided not to do the usual two rounds, but instead plan for four to five rounds, concluding before summer 2022. This provides room to really dive into the matter exposing the ambiguities before we move on to a consensus, or to a conclusion there is no consensus. The personal comments which we receive (some included in the box below) suggest that the considerable time commitment we are asking from the panelists in participating and completing these surveys, will pay off.

“Thank you for the opportunity. It was an enriching experience.”   “Wow, I really enjoyed participating in the Delphi survey. Thank you for the invitation. I am excited to see this progress on developing specific definitions, recommendations, and graphic representations of the ACP progress.”   “I have just completed the survey and appreciate the learning opportunity.”   “I have completed round 2. I think there were some pretty tough questions.”   “It is very interesting and informative work. I look forward to seeing round 3.”  
Comments from Delphi participants

The data are rich, with numerous well-considered comments from the panel about advance care planning in dementia, which is helpful to us to improve it for subsequent rounds. Its richness may relate also to that fact that panelists from over 30 countries are participating. We purposefully sought for diversity among the panelists’ background, to ensure a breadth of views about how people might think and communicate about dementia, about planning to exert some control over the future, and wishes for family involvement, to name a few. We also sought for input from both those familiar with palliative care but not so much with dementia care, and vice versa.

In collaboration with the panel, we are developing models as part of this process. The panel is providing good overarching, thought-provoking and detailed suggestions to help us improve these. Which is what we need, because achieving a consensus on such a modelis so difficult! Some people do not like models. It is true that models never capture all complexities in daily life. Providing a clear abstraction is a puzzle that needs diverse input and takes many iterations. We knew this from developing the dementia EAPC White Paper care goals model a decade ago. Although this model achieved only moderate agreement, it is being reproduced over and over again and it has been appreciated.

We plan for a publication with guidance on advance care planning in dementia next year, but we are eager to present results for a palliative care and a dementia care audience earlier than this. A big thank you to the Delphi expert panel, to the EAPC for providing such a supportive platform and to Brenda Schakenbos, our assistant, for the joy and effort she puts in developing a great looking survey.

Notes:

EAPC Task Forces are formed by interested EAPC members from a range of disciplines and different countries, who work collaboratively on a specific time-limited project. Find out more here

Links and resources

About the authors

Jenny T. van der Steen, an epidemiologist from the Netherlands, previously led the EAPC dementia palliative care Task Force which, in 2014, resulted in a White Paper defining palliative care in dementia based on a Delphi study. In 2009, she was the first to receive the EAPC Young Investigator Award (now called Early Researcher Award). The main funding for her research on end of life in dementia is currently provided by the European Research Council.

Ida J. Korfage is also an epidemiologist from the Netherlands. Her research and teaching focus on shared decision-making, advance care planning, e-health and quality of life. From 2016-19 she was elected member of the Board of Directors of the International Society of Quality of Life Research (ISOQOL). She previously co-chaired the EAPC Task Force on advance care planning with Judith Rietjens. This resulted in a White Paper defining advance care planning based on an international Delphi study.


WELCOME TO EAPC 12TH WORLD RESEARCH CONGRESS ONLINE –18 – 20 MAY 2022. REGISTER NOW!

Posted in Dementia, EAPC Task Forces/Reference Groups | Tagged | Leave a comment