CYP Research in Palliative Care
@cyp_csi
@CSI_KCL research on the needs of CYP with life-limiting conditions (C-POS); family experiences of newborn screening (ReSPoND); & CYP facing bereavement (SCYP)
ID: 1039214892811780097
https://www.kcl.ac.uk/cicelysaunders 10-09-2018 18:11:52
603 Tweet
837 Followers
1,1K Following
How do #children & #YoungPeople use #language to describe their own #LifeLimiting/#LifeThreatening condition #pedpc? Katherine Bristowe undertook a secondary #DiscourseAnalysis to find out. Full article: doi.org/10.1177/026921ā¦
Delighted to participate in the final CYP Research in Palliative Care C-POS project meeting. Robust. Scientifically complex in leadership. 76 UK sites, over 500 participants, CYP, Parents, HSCPs & commissioners. 20yrs+ of waiting Fabian's Childhood Cancer Trust Lucy Coombes Hannah Scott RichardHarding Debbie Braybrook (she/her)
What are the benefits, risks, barriers & facilitators to implementing PCOMs into paediatric palliative care #pedpc? Hannah Scott led a qualitative interview study to find out. š°Full article: doi.org/10.1177/026921ā¦ šPodcast: traffic.libsyn.com/secure/sagepalā¦ / podcasts.apple.com/gb/podcast/sagā¦
C-POS:UK - for families of children and young people with life-limiting and life-threatening conditions: youtu.be/0UMJdSAzz9U?feā¦ @KingsNursing Cicely Saunders Institute at King's NIHR ARC South London Horizon Europe šŖšŗ European Research Council (ERC) Fabian's Childhood Cancer Trust DaniellaLogunFoundation (DLF) Together for Short Lives The Association for Paediatric Palliative Medicine #pedpc
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?feā¦ @KingsNursing Cicely Saunders Institute at King's NIHR ARC South London Horizon Europe šŖšŗ European Research Council (ERC) Together for Short Lives The Association for Paediatric Palliative Medicine #pedpc
Excited to share these two short videos (for families & #pedpc professionals), about the potential benefits of C-POS (CYP Research in Palliative Care Cicely Saunders Institute at King's), developed based on findings & recommendations from my #PhD with #PPI Professionals: youtube.com/watch?v=wNeOWqā¦ Families: youtube.com/watch?v=0UMJdSā¦
An important step in #PCOM development is #cognitive testing to establish comprehensibility, comprehensiveness, relevance & acceptability. Lucy Coombes led a cognitive interview study to test and refine the initial versions of C-POS #pedpc. Full article: doi.org/10.1177/026921ā¦
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? Hannah Scott conducted research as part of her PhD & this is what she found: buff.ly/4dVNY4f
Childrenās Palliative Care Outcome Scale (C-POS) Videos Launched: ehospice.com/inter_childrenā¦ #pedpc ehospicenews ICPCN Cicely Saunders Institute at King's @KingsNursing DaniellaLogunFoundation (DLF) The Association for Paediatric Palliative Medicine
New paper - please stop asking professionals about barriers to #pedpc we need to make changes and evaluate to improve ā¦Cicely Saunders Institute at King'sā© ā¦RichardHardingā© ā¦CYP Research in Palliative Careā© ā¦True Colours Trustā© ā¦Together for Short Livesā© ā¦The Association for Paediatric Palliative Medicineā© journals.sagepub.com/doi/10.1177/02ā¦
Such a pleasure to share the stage with ā¦Dr Rachel Clarkeā© this evening (my twitter hero!)- we must work together to improve care for children with palliative care needs and their families ā¦ā¦Cicely Saunders Institute at King'sā© ā¦#pedpc ā¦Together for Short Livesā©
Hoping to see lots of you there in person The Association for Paediatric Palliative Medicine Hospice UK RCPCH Dr Rachel Clarke #ppc Together for Short Lives ether