Recommended resources

A useful guide and introduction to children’s palliative care. The document offers an overview of the pathway of care and sets six standards for delivering high quality, effective children’s palliative care. It covers principles of good practice from initial diagnosis of recognition of the need for palliative care, through assessment care at the end of life and through bereavement.

There is useful background information, but the reader should be mindful of the current revisions being made to the core categories and model of children’s palliative care.

Time to read 2-3 hours

How to access - The Core Care Pathway from Together for Short Lives

Access free independent learning modules developed by the ICPCN and endorsed by the University of South Wales on a range of topics: https://www.elearnicpcn.org/my/

Reviewed here is 'Introduction to children's palliative care'. 

What is it about? Introduces categories of children who have palliative care needs, includes the global perspective, an overview of models of palliative care delivery and why children are different to adults. 

Who is it for? Multidisciplinary team, global application

Time to allow: ~1 hour.

Learning style: Mostly reading & graphics, with a short quiz and certificate at the end.  

The 'Little Teapot' model of paediatric palliative care provision may be helpful to explain to other professionals about how it all fits together...

'The state of children's palliative care in 2024' 

A TFSL summary report describing the current status in the UK of children's palliative care service delivery. 

This book is available in paper, electronic and audiobook format.

It tells the story of organ donation through the lives of two extraordinary children.  It explores the history of the medical innovations that allowed organ donation to happen intertwined with the journey of one heart.  The complexities of grief, hope and love are beautifully demonstrated through the lives of these families.

Time: approx 9 hours

The Southeast PPI Group lead this webinar on on Pain - look deeper, as part of Children's Hospice Week 2023. 

We hear from Dr Emily Harrop about some definitions of pain and parents in discussion of their own experiences. The phrase "look deeper" comes from them, and they ask us to focus on allowing a child and family to be heard. 

Watch time 90 minutes

This short YouTube video is funny description of why we experience pain, and how our previous experience impacts our pain experience.

Although not strictly palliative care, it is a really helpful introduction. 

Time: 15 minutes

3 years part-time blended learning course (or 2 years to finish with diploma), some F2F taught days at the beginning of each year.

It is taught with an all-age approach but with paediatric-specific modules. You should be working with palliative patients clinically alongside, giving real-world applicability to your studies.

Suitable for all members of the multi-disciplinary team.

Find out more here

Research study evaluating paramedic delivery of end of life care.

Current practice and experiences 

Explores the challenges faced, confidence and competence.

Time - Allow 10 minute read.   

Paramedics providing end-of-life care: an online survey of practice and experiences | BMC Palliative Care | Full Text

Presented by Heard, this webinar draws on narrative research and cognitive science to explore how professionals can use framing to improve people’s understanding and decision-making around children’s palliative care.

Attendees said:

Thank you for the opportunity to reflect upon my own practice and tools which I can adapt to my work, and thank you for helping me to recognise the personable things we try to do for families really do make a difference. I will share some of these insights with my colleagues who may not feel as comfortable as me in commencing these discussions. 

Thank you for a powerful presentation, we never stop learning as professionals working with families in palliative care.

I really appreciate the time and consideration given for this session. It was really helpful and lots to think about.