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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: 20/07/2021

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.
Blackburn M et al. (2019) Talking about sex, sexuality and relationships: guidance and standards. For those working with young people with life-limiting or life-threatening conditions. Bristol: Together for Short Lives.
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.) (2020) The Association of Paediatric Palliative Medicine master formulary (5th edition).
Jassal S (2016) Basic symptom control in paediatric palliative care: the Rainbows Children's Hospice guidelines. 9.5 edn. Bristol: Together for Short Lives.
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.
Together for Short Lives (2019) Caring for a child at end of life (2019) A guide for professionals on the care of children and young people. Bristol: Together for Short Lives.
Together for Short Lives (2019) Caring for your child at end of life. A guide for parents and carers. 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 (2018) A guide to children’s palliative care: supporting babies, children and young people with life-limiting and life-threatening conditions and their families. 4th edn. Bristol: Together for Short Lives.
Together for short lives (2016) Moving to adult services: what to expect. a guide for young people with life-threatening conditions making the transition to adult services. 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 the RCN CYP Palliative Care community and  Sue Langley - Library & Information Services Manager, East Anglia’s Children’s Hospices, for their input into the development of this subject guide.




Books

Amery J (2016) A really practical handbook of children’s palliative care for doctors and nurses anywhere in the world. (no place): Lulu. Amery J (2016) A really practical handbook of children's palliative care for doctors and nurses anywhere in the world. (no place): Lulu.
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.
Nash P, Hussain Z, and Parkes M (2015) Multifaith care for sick and dying children and their families: a multi-disciplinary guide. London: Jessica Kingsley. Nash P, Hussain Z, and Parkes M (2015) Multifaith care for sick and dying children and their families: a multi-disciplinary guide. London: Jessica Kingsley.
Nash S, Nash P, and Darby K (2015) Spiritual care with sick children and young people: a handbook for chaplains, paediatric health professionals, arts therapists and youth workers. London: Jessica Kingsley. Nash S, Nash P, and Darby K (2015) Spiritual care with sick children and young people: a handbook for chaplains, paediatric health professionals, arts therapists and youth workers. London: Jessica Kingsley.
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.

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Page last updated - 20/07/2021