CYP Research in Palliative Care

We are excited to share our final C-POS study newsletter. Please get in touch for more information on the project, or to request a PDF copy of the newsletter #pedpc @DrLucyCoombes @DEBraybrook @HannahM_Scott20 @childhealthqld @StarshipFDN @CSI_KCL @EAPCvzw @PalliativeMedJ

Hoping to see lots of you there in person @TheAPPMuk @hospiceuk @RCPCHtweets @doctor_oxford #ppc @Tog4ShortLives ether

New paper - please stop asking professionals about barriers to #pedpc we need to make changes and evaluate to improve ⁦@CSI_KCL⁩ ⁦@RHardingCSI⁩ ⁦@CYP_CSI⁩ ⁦@TrueColoursTrus⁩ ⁦@Tog4ShortLives⁩ ⁦@TheAPPMuk⁩ journals.sagepub.com/doi/10.1177/02…

Such a pleasure to share the stage with ⁦@doctor_oxford⁩ this evening (my twitter hero!)- we must work together to improve care for children with palliative care needs and their families ⁦⁦@CSI_KCL⁩ ⁦#pedpc ⁦@Tog4ShortLives⁩

Children’s Palliative Care Outcome Scale (C-POS) Videos Launched: ehospice.com/inter_children… #pedpc @ehospicenews @ICPCN @CSI_KCL @KingsNursing @DaniellaLogun @TheAPPMuk

C-POS:UK is the first tool developed to improve health outcomes for children with palliative care needs in the UK. What are the benefits for healthcare professionals? @HannahM_Scott20 conducted research as part of her PhD & this is what she found: buff.ly/4dVNY4f

An important step in #PCOM development is #cognitive testing to establish comprehensibility, comprehensiveness, relevance & acceptability. @DrLucyCoombes led a cognitive interview study to test and refine the initial versions of C-POS #pedpc. Full article: doi.org/10.1177/026921…

Excited to share these two short videos (for families & #pedpc professionals), about the potential benefits of C-POS (@CYP_CSI @CSI_KCL), developed based on findings & recommendations from my #PhD with #PPI Professionals: youtube.com/watch?v=wNeOWq… Families: youtube.com/watch?v=0UMJdS…

C-POS:UK - for health and social care professionals supporting children and young people with life-limiting and life-threatening conditions and their families: youtu.be/wNeOWqFkz-Q?fe… @KingsNursing @CSI_KCL @ARC_S_L @HorizonEU @ERC_Research @Tog4ShortLives @TheAPPMuk #pedpc

C-POS:UK - for families of children and young people with life-limiting and life-threatening conditions: youtu.be/0UMJdSAzz9U?fe… @KingsNursing @CSI_KCL @ARC_S_L @HorizonEU @ERC_Research @fabian_trust @DaniellaLogun @Tog4ShortLives @TheAPPMuk #pedpc

What are the benefits, risks, barriers & facilitators to implementing PCOMs into paediatric palliative care #pedpc? @HannahM_Scott20 led a qualitative interview study to find out. 📰Full article: doi.org/10.1177/026921… 🔊Podcast: traffic.libsyn.com/secure/sagepal… / podcasts.apple.com/gb/podcast/sag…

How do #children & #YoungPeople use #language to describe their own #LifeLimiting/#LifeThreatening condition #pedpc? @CSI_Linguist undertook a secondary #DiscourseAnalysis to find out. Full article: doi.org/10.1177/026921…

Delighted to participate in the final @CYP_CSI C-POS project meeting. Robust. Scientifically complex in leadership. 76 UK sites, over 500 participants, CYP, Parents, HSCPs & commissioners. 20yrs+ of waiting @fabian_trust @DrLucyCoombes @HannahM_Scott20 @RHardingCSI @DEBraybrook

Podcasts for @PalliativeMedJ: journals.sagepub.com/page/pmj/podca… Podcast 109 with @HannahM_Scott20: Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study

Podcasts for @PalliativeMedJ: journals.sagepub.com/page/pmj/podca… Podcast 119 with @HannahM_Scott20: What are the anticipated benefits, risks, barriers & facilitators to implementing PCOMs into routine care for children and young people with life-limiting and life-threatening conditions?

The C-POS study held their final steering group meeting. We're really grateful to the sites that have supported recruitment & especially grateful to our #PPI members (@DaniellaLogun @fabian_trust). We're in our final week of recruiting families to our study before analysis begins