A conversation with Dr. Sergi Navarro on the future of paediatric palliative care and the PALLIAKID project

Welcome – please can you tell us a bit about yourself?

I’m Sergi Navarro and I’m a paediatrician and the head of the Children’s Palliative Care (CPC) and Complex Care Team at the Hospital Sant Joan De Déu in Barcelona and Director of the Casia Sofia Centre. I’m also the president of the Spanish Paediatric Palliative Care Association. Here in Barcelona we have a team of more than thirty CPC professionals and part of what we are trying to do is challenging people’s ‘old fashioned’ concepts that palliative care for children is just about end of life care.  It’s much more than that.  It’s about improving the quality of life for children with many different rare diseases, and this is one of our challenges.

I am also the coordinator and the Principal Investigator of the PALLIAKID project. It’s a real team effort with an exciting expert consortium. When we put the consortium together we included  five clinical sites which are part of the European Children’s Hospitals Organisation (ECHO) network. We also included the authors of specific tools such as those for needs assessment and Advance Care Planning and we have the privilege of being associated with two of the most influential organisations in palliative care – the European Association of Palliative Care (EAPC) and the International Children’s Palliative Care Network (ICPCN).

What are the most novel aspects of PALLIAKID?

Leading digital transformation of the health system and using technology to solve three very complex problems. It is possible that these three areas will be even more complex in the future so we are starting at the beginning to solve this increasingly complex problem in paediatrics. For example, I think the early identification system will help standardise the identification of children and families who would benefit from palliative care.

How are you involving families in the project?

Families have a fundamental role in the project. We have a group of families already involved in the palliative care association here in Spain and we know that families want to be involved in decisions and it is essential that we know what is important to them.  We also plan to integrate children from the beginning and make sure that their different communication needs are met.  We have 17 partners on the project, but we want to work with other external experts and associations in this area who may have tried different approaches to engaging children and families, such as members of the EAPC Children’s Reference Group. It’s a good opportunity for collaboration with both large and small initiatives in CPC.

How will you deal with cultural diversity in the project?

When we were thinking about who would be in the consortium, we wanted to have clinical partners from around Europe so we have partners from the North, East and South which will give us some cultural differences.

However, even though we have different countries as a sample of different cultures, current migration means that we are seeing children with advanced chronic rare diseases from other countries out of Europe and from a range of cultural backgrounds.  Here in Barcelona, we reviewed the nationality of our patients and more than 40% were born in other countries, so it’s not only the culture of the different European countries but also the different cultures of migrant families living within them. This will be one of the challenges for the project.

What do you think are the main risks of this ambitious project?

One of the risks is the stage of development of CPC. In the last ten years a lot of progress has been made and CPC has been put on the table with policy-makers and within society, but when you ask teams they don’t always have their data or criteria well organised or defined.  We are working on this globally, but I think we will have to hurry up to put things in order!  We want to be able to apply this novel approach and be able to compare against a standard approach.

How can others get involved in the project?

It was a real challenge when we set up the consortium. We know there are a lot of trailblazers and people out there doing a lot of great things and we don’t want to start from zero. We want all these colleagues to take advantage of PALLIAKID. It’s not a coincidence that we are working with the ICPCN and EAPC because they are connected with people working in this low incidence, high complexity population. We need to engage together beyond the PALLIAKID consortium and will explore how we can do this.

How can people find out more about the project?

You can go to the PALLIAKID website! Anyone can contact us!

About ICPCN and PALLIAKID

PALLIAKID is an interdisciplinary project aiming to evaluate the feasibility, effectiveness, and cost-effectiveness of novel interventions for children, adolescents and young people (AYA) with palliative and end-of-life care needs in different healthcare systems across Europe, with a focus on those factors that influence the active patient’s and family caregiver’s engagement.

We are excited to let you know that ICPCN is a partner in PALLIAKID, a EU-funded research project led by Dr Sergi Villarubi, from San Joan de Deu Hospital in Barcelona. The consortium includes 17 partners in 12 countries, and is funded for 54 months starting January 2024. ICPCN is involved in several of the work packages in particular  Work Package 7 (policy recommendations and knowledge transfer).