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C

Cultural conflict - Book recommendation

Book title: The Spirit Catches You and you Fall Down

Author: Anne Fadiman

Link to purchase: https://www.amazon.co.uk/Spirit-Catches-You-Fall-Down/dp/0374533407

Summary:

"If you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?"

In this book Anne Fadiman tells the true tale of Lia Lee, a Hmong child diagnosed with epilepsy treated at a small hospital in the USA. Fadiman explores the complexity arising when the care of a child is caught between a conflict of cultures.

Reading time: 8 hours

Keyword(s):

Cultural experiences of death & dying

Produced for HospiceUK Dying Matters Awareness Week 2025, this video explores the cultural experiences of three hospice volunteers:

D

Death & dying: TedTalk what happens when we die?

Have we lost the practical wisdom of what happens as people die? With lessons from a career witnessing thousands of people's final breaths, palliative care expert Kathryn Mannix urges us to demystify the experience of death, sharing how a better understanding of what actually happens can reduce fear in the final days, for you and your loved ones.

Keyword(s):

Disagreements in the care of critically ill children

Commissioned in Dec 2022 after some high-profile cases, this report looks at available literature, did a

call for evidence, interviews with parents and surveys with follow-up workshops with healthcare professionals to examine the ethical challenges in treating critically ill children, how disagreements develop, the impact of disagreements (on the child, families and healthcare professionals) and ways of resolving disagreements.

Evidence is presented thematically, with case studies highlighting good practice and recommendations for further research, guidance development, education and clinical practice adaptations.

In the appendix there are some useful infographics too:

Read-time for the full report is quite long (allow at least 20-30 minutes), but could be a useful springboard for discussion or help build evidence for organisational change.

Report freely available on their website here or see pdf below.

NCOB-Disagreements-Critical-Care-Indepdent-Review-FINAL.pdf

Keyword(s):

E

Education & PPC

Part of the Southeast PPI led webinar series, this session was on Education and Paediatric Palliative Care, held in Oct 2023 as a HATs on event for the ICPCN (hence the amusing hats!)

Parents, healthcare and education professionals discuss why education is important for those with palliative diagnoses and how we should all be creative and curious in how we can help children and their siblings maintain this vital link with 'normalcy'.

Watch time: 50 mins

Keyword(s):

Education Network Newsletters

image%20%283%29.png The South of England PPC Education Network produce a quarterly newsletter, in March, June, September & December.

Find out what we are up to, how to access PPCEducate and some dates for your diary.

Feel free to download the attached pdf and share!

Want to see your education event advertised? Email it to ppceducate@gmail.com

PPCEducate Summer update (1).pdf

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Enhancing Practice in Palliative Care for Children, Young People and Families

This 20 credit module, Enhancing Practice in Palliative Care for Children, Young People and Families, taken at either level 6 or level 7, has been designed in collaboration with practice partners in children's palliative care.

Our aim is to offer a course to professionals working with children and families with palliative care needs in any setting, that:

values and builds your existing knowledge and experience
explores the key issues facing children's palliative care practice
develops your academic skills and confidence
creates a supportive space in which sensitive issues can be discussed
encourages you to share ideas to take back into practice.

Course sessions will be offered by experts in the field from a range of practice and academic roles.

Keyword(s):

F

Framing: how to talk about children's palliative care

HEARD are experts in media and communication training, and help others to better explain misunderstood social change. A key message is to tell with stories, and open with the truth (rather than myths).

image%20%281%29.png

They published in the BMJ in 2026 - Shifting the narrative: reframing paediatric palliative care to enable earlier engagement - see here for full article.

Download the full HEARD CPC communications toolkit & framing guide from HEARD website, or pdf attached

Heards-CPC-Framing-Guide.pdf

Keyword(s):

G

GI dystonia - Gastrointenstinal dystonia in paediatric palliative care APPM guideline

Defining gastrointenstinal dystonia as:

"Clinical manifestations of distress (pain behaviour, hypertonicity, retching, vomiting, vagal phenomenon, abdominal distension) attributable to the gastro-intestinal tract, durectly and indrectly related to feeding and bowel habit, where confounding systems distress have been addressed or excluded".

Offeres general principles of communication, assessment and considerations, and a handy summary management algorithm (image is the 'management' section, please refer to full guidance).