Abstract
This chapter focuses on the core principles of symptom management rather than providing detailed management for potential symptoms. Although much of this chapter focuses on facilitating care delivery outside the busy, high tech neonatal unit environment, these core principles are transferrable between care settings such as hospital, hospice and home. Symptom management planning is a skilled task, developed through good assessment, sound clinical judgement and specialist knowledge. Successful symptom management requires the healthcare professional to anticipate a baby’s care needs and provide an informed choice for and empowerment of families. This, coupled with thorough holistic assessment enables care planning to address the current symptoms, anticipatory planning for any likely symptoms associated with the baby’s specific condition and advance care planning to identify the hopes, ambitions and wishes of parents in terms of their participation in care provision, their views on the location of care and any desired limitations to care. When these factors are achieved, high quality neonatal palliative care can be delivered to reduce symptom burden and maximise quality of life for both the baby and their family.
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References
Association for Children’s Palliative Care (ACT) (2009a) A guide to the development of children’s palliative care services, 3rd edn. ACT, Bristol
Association for Children’s Palliative Care (ACT) (2009b) A neonatal pathway for babies with palliative care needs. ACT, Bristol
Carter B, Simons J (2014) Stories of children’s pain. Linking evidence to practice. Chapter 1. Sage, Thousand Oaks, CA
East of England Children’s Palliative Care Managed Clinical Network (2018) Symptom management plan guidance Local Guidance
Fortney CA, Steward DK (2016) A qualitative study of nurse observations of symptoms in infants at end of life in the neonatal intensive care unit. Intensive Crit Care Nurs 40:57–63. https://doi.org/10.1016/j.iccn.2016.10.0040964-3397
Gibson F, Aldiss S, Taylor RM, Maguire R, Kearney N (2009) Involving health professionals in the development of an advanced symptom management system for young people: the AsyMS-YG study. Eur J Oncol Nurs 13:187–192
Goldman A, Hewitt M, Collins GS, Childs M, Hain R, for the United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses’ (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer study Group/Paediatric Oncology Nurses Forum Survey. Pediatrics 117:1179–1186
Hain R, Weinstein S, Oleske J, Orloff S, Cohen S (2004) Holistic management of symptoms. In: Carter B, Levetown M (eds) Palliative care for infants, children and adolescents: a practical handbook. The Johns Hopkins University Press, Baltimore, MD
Hummel P, Lawlor-Klean P, Weiss MG (2010) Validity and reliability of the N-PASS assessment tool with acute pain. J Perinatol 30:474–478
Hunt A, Mastroyannoupoulou K, Goldman A, Seers K (2003) Not knowing—the problem of pain in children with severe neurological impairment. Int J Nurs Stud 40(2):171–183
Jalmsell L, Kreicbergs U, Onelov E, Steineck G, Henter JI (2010) Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents. Pediatr Blood Cancer 54(5):751–757
Lemmon ME, Bidegain M, Boss RD (2016) Palliative care in neonatal neurology: robot support for infants, families and clinicians. J Perinatol 36:331–337. https://doi.org/10.1038/jp.2015.188
Mancini A, Kelly P, Bluebond-Langner M (2013) Training neonatal staff for the future in neonatal palliative care.Semin Fetal Neonatal Med 18(2):111–115
Mancini A et al (2014) Practical guidance for the management of palliative care on neonatal units, 1st edn. Chelsea and Westminster Hospital NHS Foundation Trust, London
Maynard L, Lynn D (2016a) Development of a logic model to support a network approach in delivering 24/7 children’s palliative care: part one. Int J Palliat Nurs 22(4):176–184. https://doi.org/10.12968/ijpn.2016.22.4.176
Maynard L, Lynn D (2016b) Development of a logic model to support a network approach in delivering 24/7 children’s palliative care: part two. Int J Palliat Nurs 22(6):278–285. https://doi.org/10.12968/ijpn.2016.22.6.278
McNamara-Goodger K, Cooke R (2009) Children’s and young people’s palliative care: good practice guidelines. Primary Health Care 19(2):40–47
Merkel S, Voepel-Lewis T, Malviya S (2002) Pain assessment in infants and young children: the FLACC scale. Am J Nurs 102(10):55–58
Nurse S, Price J (2016) ‘No second chance’—junior neonatal nurses experiences of caring for an infant at the end-of-life and their family. J Neonatal Nurs 23(2):50–57. https://doi.org/10.1016/j.jnn.2016.04.008
Pal S, Jones J, Job S, Maynard L, Curley A, Clarke P (2015) Characteristics of babies who unexpectedly survive long-term after withdrawal of intensive care. Acta Paediatr 105:468–474
Shultz EL, Switala BS, Winning AM, Keim MC, Baughcum AE, Gerhardt CA, Fortney CA (2017) Multiple perspectives of symptoms and suffering at end of life in the NICU. Adv Neonatal Care 17(3):175–183
Together for Short Lives (2017) A perinatal pathway for babies with palliative care needs, 2nd edn. Together for Short Lives, Bristol
Twycross R (2003) Introducing palliative care, 4th edn. Radcliffe Publishing, Abingdon
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Maynard, L. (2020). Fundamental Principles of Effective Symptom Management in Neonatal Palliative Care. In: Mancini, A., Price, J., Kerr-Elliott, T. (eds) Neonatal Palliative Care for Nurses. Springer, Cham. https://doi.org/10.1007/978-3-030-31877-2_16
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