Discover key insights from the 13th EAPC Research Congress.
The 13th EAPC Research Congress took place from 16-18 May in Barcelona – the first face to face Research Congress since 2016 and it was a full house! This year it was great to see a strong children’s palliative care programme with 3 paediatric sessions spread across the 3 days of the conference, featuring 18 oral presentations which spanned many areas of research.
The first paediatric session included two presentations from Dr Hannah Linane, Fellow in Adolescent and Young Adult Palliative Medicine from Children’s Health Ireland. Her first presentation looked at the referral of adolescents and young adults (AYA) aged 13-24 to specialist palliative care. Her data showed that there was a high symptom burden, including psychological symptoms, and that referral was often made late. It was also noted that young people with cancer tended to have their symptoms recognised more than those with non-malignant conditions, which may be due to more frequent and rigorous assessment in oncology. Hannah’s second presentation was a scoping review of Advance Care Planning for AYA, looking at common concerns and the different tools that can be used to frame ACP discussions.
Dr AK Anderson, Children’s Palliative Care Consultant and Chair of the Association of Paediatric Palliative Medicine (APPM) in the UK, presented on the development of their new guidelines on agitation, one of three APPM Clinical Guidelinespublished last year. She explained that a ‘bottom up’ approach had been used whereby evidence was used where this existed and was supplemented with clinical experience. Only 3 papers had met the standard to include in the review.
Global Insights and Research Findings
Dr Dorothy Olet, a medical doctor from Uganda, who is currently based in Lisbon, shared the findings of her PhD into the diversity of place of death in children who had died between 2012-2021 in 33 countries. She noted that 70% had died in a hospital or health institution, especially for babies aged under 1. Just 12.5% had died at home. Alex Daniels, ICPCN Education Manager, presented the findings of the evaluation of the training delivered recently in Iraq and Lizzie Chambers ICPCN Project Manager, presented the results of the latest ICPCN global mapping survey. The results of both of these projects will be published and can then be shared more widely.
Further Pediatric Discussions
The second paediatric session began with a talk from Dr Debbie Braybrook, Research Associate, at the Cicely Saunders Research Institute about ‘Stakeholder perspectives on communications in providing quality CPC’, looking at how the experiences of children, young people, families and professionals aligned with three standards of the EAPC Charter for Children’s Palliative Care.
Dr Julia Hackett, Research Fellow from the Martin House Research Centre at the University of York presented on the ‘ENHANCE’ study which looked at the experiences of professionals delivering end of life care across four different settings: Neonatal Intensive Care, Paediatric Intensive Care, Treatment Centres for Children with Cancer and Treatment Centres for Teenagers and Young Adults. This is the largest UK study on end-of-life care and has shown how systems and processes limit the delivery of care.
Parental and Patient Perspectives
Dr Tala Al-Dabbous, CEO of the Bayt Abdullah Hospice in Kuwait, PhD student at Lancaster University and a Clinical Nutritionist by background, talked about parental experiences of their child’s declining food intake towards the end of life. She identified 6 key themes: heartbreak, it being a sign of their child’s disease progression, food as a means of love, the significance of the ‘last meal’, how it can mean missing out on shared mealtime experiences and worry about their child dying hungry.
Dr Renee McCulloch a Children’s Palliative Care Consultant, from Great Ormond Street Children’s Hospital, talked about the use of methadone as a safe alternative in children’s cancer pain management. She concluded that as a long-acting agent it can be successfully used alongside other short-acting drugs for breakthrough pain.
Integration and Communication in Care
Tracie Lewin-Taylor, Director of Care at Shooting Star Children’s Hospice, shared the findings of her MSc Dissertation, a systematic review of the integration between palliative care and the NICU/PICU. She highlighted three key themes from her review about the models of care (whether palliative care was provided by the team on the unit or with external palliative care team), about the hierarchy of decision-making between doctors and nurses and the need for integration of palliative care within the ICU, with a need to develop a roadmap of how to integrate specialist palliative care even if this care is provided by staff within the unit.
Dr Hannah Scott, a PhD candidate at the Cicely Saunders Institute of Palliative Care, presented her study on the perceived benefits of using person-centred outcome measures and the findings of qualitative interviews with children, professionals and commissioners (statutory funders). There were three key themes identified: 1) better understanding of what’s important to patients and families, 2) improved communication and collaborative working, with better join-up across teams so parents don’t have to continually repeat their story 3) standardised data collection and reporting.
Closing Insights
There was also a session of quickfire presentations on the many palliative care projects that had been funded through the EU. Just one of these projects, Palliakidis for children. Project lead Dr Sergi Navarro from the San Joan de Deu Hospital in Barcelona, presented the 8 different work packages that make up this 4 ½ year project which started in December 2023.
On the final morning of the Congress, Laura Barrett a Research Associate from the University of York, shared findings from a large UK study that focused on parents’ experiences of their child’s end of life care. Central to the delivery of high-quality end of life care was the need to offer parents choices and control. In addition, the study raised the need to address inequity in access to support and services.
Exploring Religious and Financial Impacts
‘God is the DJ of the faith list’ is a quote from a parent interviewed in a study based in Barcelona that focused on parental religiosity in paediatric palliative care. Pau Miquel from San Joan de Deu Hospital, shared findings that include eliciting the characteristics that parents attribute to God as a useful indirect method to carry out a conversational assessment of their spirituality.
Karen Zimmermann from Basel, shared findings from a study in Switzerland that examined the financial and employment implications for parents of their child’s hospitalisation and death. Families incur higher travel and accommodation expenses which can be alleviated by measures such as hospital parking or food vouchers. The study also found that early return to work during bereavement may be driven by economic considerations.
Medication Safety and Family Support
Bhumik Patel, Clinical Pharmacist from Great Ormond Street Hospital, shared findings from a study that sought to measure and describe medication errors occurring for children receiving end of life care in their homes. Of note was the incidence of healthcare professional errors that suggest systems-based issues that may expose patients to risk that require investigation.
The final presentation was from Dr Daryl Bainbridge, who shared a Canadian study that looked at the feasibility and impact of a Child Life Specialist programme that supported children of adult patients with advanced cancer. The study was conducted during the COVID-19 Pandemic and CLS interventions included guidance on talking with children, providing resources and diagnostic teaching.