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Children and Young People: Palliative Care

Palliative care for children and young people with life-limiting conditions focuses on improving the quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of care through death and bereavement. Use this guide to find information resources about recognising and caring for a child with life limiting conditions including books, reports and journal articles.

Last updated: 01/12/2020

Key Resources

Royal College of Nursing (2018) RCN competencies: caring for infants, children and young people requiring palliative care (2nd edition), London: RCN. Royal College of Nursing (2018) RCN competencies: caring for infants, children and young people requiring palliative care. 2nd edn. London: RCN.
Chambers L and Kelly K (2015) Stepping up: A guide to developing a good transition to adulthood for young people with life-limiting and life-threatening conditions. Bristol: Together for Short Lives.
Jassal S (ed.) (2017) The Association of Paediatric Palliative Medicine master formulary (4th edition).
Mancini A, Uthaya S, Beardsley C, Wood D and Modi N (2014) Practical guidance for the management of palliative care on neonatal units. London: Chelsea and Westminster NHS Foundation Trust.
National Institute for Health and Care Excellence (2016) End of life care for infants, children and young people with life-limiting conditions: planning and management. London: NICE.
  • NICE guidance is officially England only.
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Pinney, A (2016) Understanding the needs of disabled children with complex needs or life-limiting conditions. Council for Disabled Children.
Jassal S (2016) Basic symptom control in paediatric palliative care: the Rainbows Children's Hospice guidelines. 9.5 edn. Bristol: Together for Short Lives.
Together for Short Lives (2013) A core care pathway for children with life-limiting and life-threatening conditions. 3rd edn. Bristol: Together for Short Lives.
Together for Short Lives (2018) Hidden lives: tackling the social exclusion of families caring for a seriously ill child. Bristol: Together for Short Lives.
Together for Short Lives (2017) A perinatal pathway for babies with palliative care needs. 2nd edn. Bristol: Together for Short Lives.

We would like to thank Sue Langley - Library & Information Services Manager, East Anglia’s Children’s Hospices, for her input into the development of this subject guide.




Books

Black B, Wright P and Limbo R (2016) Perinatal and pediatric bereavement in nursing and other health professions, New York: Springer. Black B, Wright P and Limbo R (2016) Perinatal and pediatric bereavement in nursing and other health professions. New York: Springer Publishing.
Boath E and Pfund R (2016) Palliative care nursing of children and young people. London: Routledge.
Carter B, Levetown M and Friebert S (2013) Palliative care for infants, children, and adolescents: a practical handbook (2nd edition), Baltimore: Johns Hopkins University Press Carter B, Levetown M and Friebert S (2013) Palliative care for infants, children, and adolescents: a practical handbook. 2nd edn. Baltimore: Johns Hopkins University Press.
Dahlin C, Coyne P & Ferrell B (2016) Advanced practice palliative nursing, New York: Oxford University Press. Dahlin C, Coyne P and Ferrell B (2016) Advanced practice palliative nursing. New York: Oxford University Press.
Downing J (2020) Children’s palliative care: an international case-based manual. Cham: Springer. Downing J (ed.) (2020) Children’s palliative care: an international case-based manual. Cham: Springer.
Ferrell B and Hospice and Palliative Nurses Association (2016) Pediatric palliative care. New York: Oxford University Press.
Goldman A, Hain R, & Liben, S (2012) Oxford textbook of palliative care for children (2nd edition) Oxford: Oxford University Press. Goldman A, Hain R and Liben S (2012) Oxford textbook of palliative care for children. 2nd edn. Oxford: Oxford University Press.
Grinyer A (2012) Palliative and end of life care for children and young people: home, hospice and hospital, Chichester: Wiley-Blackwell. Grinyer A (2012) Palliative and end of life care for children and young people: home, hospice and hospital. Chichester: Wiley-Blackwell.
Hain R & Jassal S (2016) Paediatric palliative medicine (Second edition), Oxford: Oxford University Press. Hain R and Jassal S (2016) Paediatric palliative medicine. 2nd edn. Oxford: Oxford University Press.
Mancini A, Price J and Kerr-Elliott T (2020) Neonatal palliative care for nurses. Cham: Springer. Mancini A, Price J and Kerr-Elliott T (eds.) (2020) Neonatal palliative care for nurses. Cham: Springer.
Watson M (2016) Palliative adult network guidelines and paediatric palliative care guidelines. 4th edn. Academic Health Science Network.
Wolfe J, Hinds P and Sourkes B (2011) Text book of interdisciplinary pediatric palliative care, Saunders. Wolfe J, Hinds P and Sourkes B (2011) Text book of interdisciplinary pediatric palliative care. Philadelphia: Saunders.

Book subject searches

Use these links to see details of books the RCN libraries hold on each topic.

Journal articles

Use these links to see details of journal articles on each topic.

Journals

Journal of Pain and Symptom Management Journals of interest for children and young people palliative care. Use these links to see details of availability.

This subject guide relates to:

RCN Children and Young Peoples' Conference and Exhibition

This one day conference aimed at nursing professionals working with children and young people will provide the latest guidance, policy developments and resources that will enable enhanced care and service provision for young people and their families.

26 Feb 2021, 20 Cavendish Square (TBC)

RCN Library staff

Nadia Munir

Author of this guide

RCN Library and Archive Service

Page last updated - 01/12/2020