Paediatric palliative care: Development and pilot study of a 'Directory' of life-limiting conditions

BMC Palliative Care

Volumn 12, Issue 1, 2013, Pages

  Hain, Richard ^a,b,c   Devins, Mary ^d   Hastings, Richard ^e   Noyes, Jayne ^b  

^a CHILDREN S HOSPITAL FOR WALES   (United Kingdom)

^b BANGOR UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF GLAMORGAN   (United Kingdom)

^d OUR LADY S CHILDREN S HOSPITAL   (Ireland)

^e BANGOR UNIVERSITY   (United Kingdom)

Author keywords

Epidemiology; Palliative care; Public health; Symptom control; Trajectory

Indexed keywords

ARTICLE; CEREBRAL PALSY; CHILD CARE; CONGENITAL DIAPHRAGM HERNIA; CONGENITAL MALFORMATION; DEATH CERTIFICATE; DIRECTORY; DUCHENNE MUSCULAR DYSTROPHY; EPILEPSY; HOSPICE CARE; HUMAN; HYPOPLASTIC LEFT HEART SYNDROME; ICD-10; MAJOR CLINICAL STUDY; MUSCULAR DYSTROPHY; PALLIATIVE THERAPY; PERINATAL ASPHYXIA; PERSISTENT PULMONARY HYPERTENSION; PILOT STUDY; TERMINAL CARE; TERMINAL DISEASE; TRAUMATIC BRAIN INJURY; TRISOMY 13; UNITED KINGDOM;

EID: 84889785987     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/1472-684X-12-43     Document Type: Article

References (18)

1. ACT, The Transition Care Pathway Bristol, UK: Together for Short Lives A Framework for the Development of Integrated Multi-Agency Care Pathways for Young People with Life-threatening and Life-limiting Conditions. 2007
2. ACT, A Guide to the Development of Children's Palliative Care Services Bristol, UK: Together for Short Lives 3 2009
3. ACT, A Neonatal Pathway for Babies with Palliative Care Needs Bristol: ACT 2009
4. Katrina McNamara-Goodger LM, ACT, Right People, Right Place, Right Time: Planning and developing an effective and responsive workforce for children's and young people's palliative care Bristol: ACT 2009
5. ACT, McNamara-Goodger) LCaK, A Family Companion to the ACT Care Pathway for children with life-limiting and life-threatening conditions Bristol: ACT 2009
6. ACT/RCPCH, A guide to the development of children's palliative care services Bristol and London: ACT/RCPCH 1 1997
7. ACT/RCPCH, A Guide to the Development of Children's Palliative Care Services-Second Edition, September 2003 Bristol, UK: Together for Short Lives 2003 Updated report. ACT/RCPCH
8. Predicting death in children. Brook L, Hain R, Arch Dis Child 2008 93 12 1067 1070 10.1136/adc.2007.127332 18562454
9. Craft PSA, Killen S, Palliative care services for children and young people in England London: Department of Health 2007
10. Public Health Wales Observatory, Available from: http://www. publichealthwalesobservatory.wales.nhs.uk/. (accessed September 2011)
11. Disease trajectories and ACT/RCPCH categories in paediatric palliative care. Wood F, Simpson S, Barnes E, Hain R, Palliat Med 2010 24 8 11 Epub 2010/08/20
12. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD, Pediatrics 2001 107 6 99 Epub 2001/06/05 10.1542/peds.107.6.e99 11389297
13. Pediatric palliative care patients: a prospective multicenter cohort study. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al. Pediatrics 2011 127 6 1094 1101 Epub 2011/05/11 10.1542/peds.2010-3225 21555495
14. Palliative care in children in Wales: a study of provision and need. Hain RDW, Palliat Med 2005 19 137 142 10.1191/0269216305pm967oa 15810753 (Pubitemid 40443697)
15. How children die: classifying child deaths. Pearson GA, Ward-Platt M, Kelly D, Arch Dis Child 2011 96 10 922 926 Epub 2010/07/27 10.1136/adc.2009. 177089 20656738
16. Rising national prevalence of life-limiting conditions in children in England. Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Pediatrics 2012 Epub 2012/03/14
17. Totsika V, Noyes J, Hastings R, Hain R, Report on DicData group of Projects (supplementary/final report) Bristol, UK: Together for Short Lives 2013
18. Cheung R, CHIMAT Atlas of Variation London: Department of Health 2011 [cited 2011 September]; Available from: http://www.chimat.org.uk/tools/ atlasofvariation