It is amazing to think that ICPCN has been running a Children’s Palliative Care (CPC) webinar series every month consistently for a little over a year. It is indeed true that the journey of a thousand miles starts with one step and we continue to take bold steps each month. The CPC webinar series is based on CPC, an international case-based manual, published by Springer 2020 that can be accessed on the ICPCN website.
The November 2022 CPC webinar series covered topics about Empowering the team through education and Integrating research into care. The speakers who facilitated the session have a wealth of experience in palliative care and they continue to serve through their work in different capacities. The speakers were Prof Julia Downing ED ICPCN, and Alex Daniels Education Manager ICPCN. Dr Jan Aldridge and Dr Susie Lapwood were co-authors for these chapters and were included as panelists. This was the 13th in our webinar series. Alex Daniels took us through empowering the team through education and Prof Julia Downing took us through integrating research into care.
Alex mentioned that palliative care is a global health issue and that palliative care education, remains a global priority, and drew attention to a range of documents that support this position. The WHA Resolution 67.18 includes palliative care as an integral component of the ongoing education and training, advocating for this at three levels:
- Basic Training and continuing education – Undergraduate medical and nursing, in-service training of caregivers at the primary care level.
- Intermediate training – Offered to all healthcare workers who routinely work with patients with life-threatening illnesses including oncology, infectious disease and paediatrics;
- Specialist palliative care training – To prepare health care professionals who will manage integrated care for patients with more than routine symptom management needs.
“In paediatrics we must acknowledge that the patient includes the whole family. In multi-disciplinary teams, the professional roles are specialized with members focused on their own tasks. In interdisciplinary teams the roles remain specialised within these teams with members working independently and sharing information in their areas of expertise,” said Alex. Inter-professional education leads to a greater understanding of other participants’ knowledge skills and roles.
- There are countless opportunities for personal and professional development within a team context.
- Learning for every care professional is lifelong, life deep and life-wide.
- Learning has the potential to transform individuals and teams impacting positively on CPC practice.
- Regular self-care practices that include self-awareness and reflective practice are vital to sustaining health care professionals.
Julia said, “All of us have a role in research. Some of us are consumers utilising the results of what some have done and others are producers of research. We also have some people in between.”
Goals of CPC research:
- To reduce suffering and improve the quality of life in babies, children, young people, and their families with life-limiting and life-threatening conditions around the world
- Enable them to ‘live well until they die.’
Globally the evidence is poor. Children and families need to be involved every step of the way. As ICPCN we undertook research looking at the priorities of global research into CPC.
Barriers and Challenges:
- Small sample size
- Limited funding
- Ethics committees
- Societies conception
“We don’t do research for the sake of research. We do research for improving the palliative care we provide. Together we can increase the evidence base in CPC.” said Julia.
Susie said that having clinicians who are researchers is really helpful to improve the overall practice of CPC. Jan mentioned that they did a survey led by Joe Taylor in 2013 on evaluating paediatric services and the themes that came out that were most valued by families were the high quality of communication and relationships.
A new series of webinars will begin in January – on Thursday 19th January at 1pm UK time.