In October, the European Association of Palliative Care (EAPC) held its 11th World Research Congress and for the first time the event was presented virtually and not in Palermo during May as planned. Another first in the history of the Research Congress was the organiser’s decision to dedicate a sizeable portion of day one to Paediatric Palliative Care, marking a significant milestone in the development of palliative care research. The three-day event was attended by 1,112 delegates from 69 countries.
It was with a sense of great anticipation and excitement that I logged on for my first EAPC Congress from the Valley of 1000 Hills in Durban, South Africa.
Catherine Walsh, a distinguished nurse researcher, opened the Congress by reflecting on the contribution nurses have made to research. She shared a personalised selection of contemporary PC research in relation to the nurse’s relationship with the patient with advanced cancer, the nurse and practice, the nurse’s approach to professional practice and the nurse as a central team member. She not only set the tone for the Congress but, in this the year of the International Year of the Nurse and Midwife, raised the profile of nurses as unique voices and future leaders in palliative research.
The Congress organisers had received > 1000 abstracts and the overwhelming breadth of oral and poster presentations reflected the multidirectional nature of PC research. In addition, the COVID-19 Pandemic presented researchers with new opportunities to explore the PC response to the pandemic and prompted rapid dialogue /review with PC colleagues across Europe and beyond. It was interesting to hear Prof Irene Higginson from the Cicely Saunders Institute in the UK, share preliminary findings and lessons learnt from the COVPall study conducted in the UK. She emphasised the need for new ways of working and, most importantly, the need for better integration across public and non-governmental, clinical and research sectors going forward. Dr Luca Riva reflected on his experience triaging patients and shared lessons from integrating PC at a hospital in Northern Italy at the start of the Pandemic.
Developments in paediatric palliative research were addressed in relation to communication, development of services and interventions in paediatric palliative care (PPC), advance care planning and the wellbeing of children, parents and professionals. In an excellent presentation on advancing communication in PPC, Prof Myra Bluebond-Langer shared findings from extended observation and audio recordings that led to common patterns in discussions with clinicians and parents around the child’s prognosis. She encouraged an interactional perspective and promoted conversations as “treasure troves” to explore and understand communication. In an interesting presentation on moving from observation and description to psychosocial intervention in PC, Prof Monica Fuhrer stressed the importance of research in order to improve our knowledge of interventions. She highlighted gender imbalance, lack of children’s voices and cultural diversity as some of the gaps in PPC research. Judith Rietjens from the Netherlands suggested paediatrics could leverage lessons learnt from the process of advance care planning (ACP) in the adult world to ensure meaningful lives and good deaths for children. She emphasised the importance of fostering connections in the ACP process: connection with patients and their family, connections with their values in the here and now and beyond and connections with ourselves as practitioners as well as between disciplines.
Lizzie Chambers from TfSL in the UK and Dr Ana Lacerda from Portugal co-chaired an open Paediatric Task Force meeting that included contributions relating to the COVID-19 Pandemic and research relating to the Children’s Palliative Outcome Scale (C-POS). This Task Force works collaboratively to develop PPC across Europe and current projects include working with ICPCN on developing a new international version of the Guide to CPC.
Dr Jo Taylor shared findings from the SHARE study conducted by the team at Martin House Research Centre. The study aimed to capture the impact and experiences of families living with life-limiting conditions, other than cancer, at the time of the COVID-19 Pandemic. Emerging themes from this study include the impact of changes in care provision on the whole family, balancing the risk of the virus and the well-being of the child and family presented as an ongoing challenge and those who were being shielded were identified as a “forgotten group.” Prof Julia Downing, another nurse, shared progress in the development of the Children’s Palliative Outcomes Scale (C- POS). Work on the African C-POS had commenced in 2009 and had developed out of an identified need for “locally relevant validated tools for children”. Dr Eve Namisango (Uganda), Marie Friedel (a PPC nurse from Belgium) and Lucy Coombess (a PPC nurse from the UK) have further developed the C-POS through their PHD studies. Dr Eve Namisango presented an impressive overview of her appraisal of the conceptual content, validity, practicality, feasibility, reliability, responsibility and interpretability of the African C-POS.
The Congress offered stimulating and engaging oral and poster presentations, intriguing Science Slams, soothing Yoga sessions, numerous Task Force, Reference group meetings and much more. There were a few ‘Meet the expert’ sessions scheduled throughout the Congress, and it was perhaps the ‘Meet the CPC expert’ that resonated most for me as a not so young, aspiring PPC nurse researcher. Joanne Wolfe and Prof Myra Bluebond -Langer invited participants to share stories and lessons that moved them ahead in their careers. The session was incredibly helpful and concluded with a list of tips that included finding a mentor, networking, learning to write comfortably, publishing your research-no matter the outcome, being practical in designing your project-making sure it is impactful, learning from mistakes, finding time to dream and, mostly importantly, prioritize taking care of yourself.
The Palliators, a group of Dutch PC professionals, added a heart-warming touch to the closing ceremony with a beautiful rendition of Ben E King’s “Stand by me”. I am inspired and stimulated by my experience at the 2020 EAPC World Research Congress, and very grateful for the opportunity to participate. I am delighted to, as a registered participant, enjoy access to the three-day event until the end of January so it is not over for me, there is much more to absorb and to look forward to. The closing ceremony offered a taste of the EAPC’s 17th World Congress scheduled for 6-8th October 2021, with planned plenaries on inclusivity in PC, technology, innovation, artificial intelligence and more. The theme for this virtual Congress will be “Exploring New Dimensions” and abstract submission opens in January 2021.
Education officer ICPCN