5 June 2022

PatchSA was well represented at the 5th Maruzza International Congress on Paediatric Palliative Care which was held from 25 – 28 May in the enchanting city of Rome, Italy. This congress, originally set to take place in 2020 and twice postponed due to the Covid-19 pandemic, brought together 335 people from countries around the world with a passion for children’s palliative care. PatchSA and South Africa were well represented at the congress.

The Congress theme was Listen, Really Listen! with the intention of giving a voice to children with serious illness and their families and the objective of improving palliative care delivery to children worldwide. regardless of their illness or their social and economic background.

The venue for the congress was the beautiful Auditorium Antonianum, in Viale Manzoni – just a short walk from one of Rome’s most famous landmarks, the Colosseum.

Opening Plenary

At the opening plenary session on the evening of Wednesday 25 May, our PatchSA Chair, Dr Michelle Meiring, and Family Stream Leader, Melissa Williams-Platt, presented a Two-way Parent/Clinician Discussion entitled ‘Are you listening?’ During this discussion, Michelle asked Melissa to share with the audience her and her husband Fred’s difficult journey in different clinical settings after the premature birth of their son Samuel, born with complex medical needs.

Melissa Williams-Platt and Dr Michelle Meiring ask healthcare providers ‘Are you listening?’ to parents of children in their care during their discussion at the opening plenary of the congress

Melissa described how, throughout Samuel’s short life of just 15 months – almost all of which was spent in hospitals, they experienced both good and bad interactions with healthcare providers. She spoke of how it felt to have their needs and concerns as Samuel’s parents disregarded by some healthcare providers and how it felt to be included and regarded as vital members of the care team by others. She reminded those present to never forget that parents are human beings who want the best for their child and deserve to have healthcare providers who recognise the humanity in everyone with whom they interact. This thought-provoking presentation helped set the tone for the remainder of the congress and was referred to regularly throughout the following three days.

Patch Academy journey

During the parallel abstract presentation sessions on Thursday 26 May, Dr Michelle Meiring and Sue Boucher, PatchSA Programme & Communications Manager, shared the events that led to the development of Patch Academy, results of assessment surveys and future plans for our online e-learning courses. The presentation, entitled ‘Tell me and I forget, teach me and I may remember, involve me and I learn’ covered information on the development of CPC in South Africa, the work of PatchSA and how the national lockdown due to Covid-19 meant that planned face-to-face training would not be possible and  led to the decision to provide an interactive online learning platform.

Dr Michelle Meiring and Sue Boucher presented on developing and assessing the Patch Academy e-learning platform on children’s palliative care

Survey results were reported on, indicating that the courses had been well received, were engaging and interactive and have had a positive effect on most of the respondents’ day to day practice, caring for children with serious illness and their families.

Support for colleagues in Ukraine

Joan Marston (left) with Ukranian delegates with donated copies of our book

On the afternoon of Friday 27 May PatchSA vice chair, Joan Marston, took the lead in organising a focus session on Children’s Palliative Care in humanitarian crises: Listening to Ukraine. 

At this moving and enlightening session delegates from Ukraine gave harrowing accounts of the difficulties of continuing to provide care to very sick children in the midst of devastation and war. All those present gave the Ukranian delegates a standing ovation and pledged not to forget them and to do what is possible to support all those providing palliative care to both adults and children in that country.

We were able to donate two of our books Palliative Care for Children: A guide for improving the quality of life of patients and their families to doctors from Ukraine.

Poster sessions

South Africa was also well represented at the daily poster sessions with 5 posters presented by South African authors. These included:

  • Listen, really listen! How do we advocate to stake holders, media, government and politicians to take palliative care for children seriously and to implement the 67th WHA resolution for palliative care integration?
    Authors: Michelle Meiring, Joan Marston, Sue Boucher, Busi Nkosi, Mark Heywood, Julia Ambler Desia Colgan, Leigh Meinhart
  • The role of child and youth care workers in paediatric palliative care (PPC): Establishing a treatment programme for inclusion of specialised social services to children needing PC.
    Author: Dr Rika Swanzen
  • Listening to their voices through poetry
    Authors: Joan Marston & Olga Malahloe
  • Use of palliative chemotherapy in South Africa: National survey of paediatric oncologists
    Authors: Büchner A, Davidson A, Meiring M
  • Use of palliative chemotherapy in South Africa: Experience in a single unit
    Authors: Büchner A, Reynders DT, Omar FE, Davidson A, Meiring M

Closing plenary

On the final day of the congress Joan Marston moderated a Round table discussion at the closing plenary entitled Listening and learning from one another – a global overview. Delegates from around the world reported on the development of children’s palliative care in their regions and included a report on developments in Africa from Dr Emmanual Luyirika, Executive Director of the African Palliative Care Association (APCA). What became evident from attending this session was that, while those of us working in South Africa still have a long journey ahead in order to reach every child in our country needing palliative care, we have also come a long way and the challenges we face are not that different from those experienced by our global colleagues.

The 6th International International Congress on Paediatric Palliative Care is scheduled to be held in 2024 in Rome and we encourage anyone who works with seriously ill children in South Africa to start making plans to attend!

More congress images

Delegates attending the 5th Maruzza International Congress on Paediatric Palliative Care at the Auditorium Antonianum in Rome

The closing plenary included a global overview of developments in CPC from different regions of the world

The South African delegation attending the congress from left to right, Dr Ané Büchner, Dr Naomi Heller (honourary South African!), Joan Marston, Dr Michelle Meiring, Sue Boucher & Melissa Williams-Platt