Skip to main content

Continuing Emotional and Practical Support for the Whole Family

  • Chapter
  • First Online:
Neonatal Palliative Care for Nurses
  • 694 Accesses

Abstract

Children’s nursing has long embraced the concept of “family-centred care” when caring for babies and children. Considering a philosophy of care that promotes a partnership between the team caring for babies and children and all family members leads to optimum outcomes for the patient and his/her family.

The impact of having a baby with a life threatening/limiting condition on all family members—parents, siblings, grandparents and extended family—is considered and specific needs will be identified within this chapter. The importance of taking a wider view of the whole family is discussed, including emotional and practical support during the life of the baby and continuing for the family after the death of the baby.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

eBook
USD 16.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 54.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 84.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Aloysius A, Kharusi M, Winter R, Platonos K, Banerjee J, Deierl A (2018a) Support for families beyond discharge from the NICU. J Neonatal Nurs 24(1):55–60

    Article  Google Scholar 

  • Aloysius A, Platonos K, Deierl A, Banerjee J (2018b) The neonatal parent experience: how IFDC can help. J Neonatal Nurs 24(1):66–73

    Article  Google Scholar 

  • Banerjee J, Aloysius A, Platonos K, Deierl A (2018) Innovations: supporting family integrated care. J Neonatal Nurs 24(1):48–54

    Article  Google Scholar 

  • Bauer PJ (1995) The parents’ perspective on neonatal intensive care. Michigan Fam Rev 1(1):47–56

    Article  Google Scholar 

  • Beavis AG (2007) What about brothers and sisters? Helping siblings cope with a new baby brother or sister in the NICU. Infant 3(6):239–242

    Google Scholar 

  • Bliss.org.uk (2014) It’s not a game: the very real costs of having a premature or sick baby. [online]. https://s3.eu-west-2.amazonaws.com/files.bliss.org.uk/images/Its-not-a-game.pdf. Accessed 19 Aug 2018

  • Brosig C, Pierucci R, Kupst M, Leuthner S (2007) Infant end-of-life care: the parents’ perspective. J Perinatol 27(8):510–516

    Article  CAS  Google Scholar 

  • Bystrova K, Ivanova V, Edhborg M, Matthiesen AS, Ransjö-Arvidson AB, Mukhamedrakhimov R, Uvnäs-Moberg K, Widström AM (2009) Early contact versus separation: effects on mother–infant interaction one year later. Birth 36(2):97–109

    Article  Google Scholar 

  • Childbereavementuk.org (2018) Child Bereavement UK. [online]. https://childbereavementuk.org/. Accessed 19 Aug 2018

  • Childhoodbereavementnetwork.org (2018) Child Bereavement Network. [online]. http://www.childhoodbereavementnetwork.org.uk/. Accessed 19 Aug 2018

  • Cleveland LM (2008) Parenting in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs 37(6):666–691

    Article  Google Scholar 

  • Don A (2005) Fathers fell too. Cromwell Press, Boston

    Google Scholar 

  • Eliopoulos C (1990) Health assessment of the older adult, 2nd edn. Addison-Wesley Nursing, Menlo Park, CA

    Google Scholar 

  • Flacking R, Lehtonen L, Thomson G, Axelin A, Ahlqvist S, Moran V, Ewald U, Dykes F (2012) Closeness and separation in neonatal intensive care. Acta Paediatr 101(10):1032–1037

    Article  Google Scholar 

  • Frisman G, Eriksson C, Pernehed S, Mörelius E (2012) The experience of becoming a grandmother to a premature infant—a balancing act, influenced by ambivalent feelings. J Clin Nurs 21(21–22):3297–3305

    Article  Google Scholar 

  • Galanti G (2014) Caring for patients from different cultures, 5th edn. University of Pennsylvania, Philadelphia, PA

    Google Scholar 

  • Gooding JS, Cooper LG, Blaine AI, Franck LS, Howse JL, Berns SD (2011) Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol 35(1):20–28

    Article  Google Scholar 

  • Griffin T, Abraham M (2006) Transition to home from the newborn intensive care unit. J Perinat Neonatal Nurs 20(3):243–249

    Article  Google Scholar 

  • Guimarães H (2015) The importance of parents in the neonatal intensive care units. J Pediatr Neonat Individual Med 4(2):e040244

    Google Scholar 

  • Hall EO, Brinchmann BS (2009) Mothers of preterm infants: experiences of space, tone and transfer in the neonatal care unit. J Neonatal Nurs 15(4):129–136

    Article  Google Scholar 

  • Hall SL, Ryan DJ, Beatty J, Grubbs L (2015) Recommendations for peer-to-peer support for NICU parents. J Perinatol 35:S9–S13

    Article  Google Scholar 

  • Kelly H (2018) Putting families at the heart of their baby’s care. J Neonatal Nurs 24(1):13–16

    Article  Google Scholar 

  • Lee S, O’Brien K (2014) Parents as primary caregivers in the neonatal intensive care unit. Can Med Assoc J 186(11):845–847

    Article  Google Scholar 

  • Mancini A, Uthaya S, Beardsley C, Wood D, Modi N (2014) Practical guidance for the management of palliative care on neonatal units. RCPCH, London

    Google Scholar 

  • McHaffie HE (1992) Social support in the neonatal intensive care unit. J Adv Nurs 17(3):279–287

    Article  CAS  Google Scholar 

  • Milberg A, Olsson E, Jakobsson M, Olsson M, Friedrichsen M (2008) Family members’ perceived needs for bereavement follow-up. J Pain Symptom Manage 35(1):58–69

    Article  Google Scholar 

  • Obeidat H, Bond E, Callister L (2009) The parental experience of having an infant in the newborn intensive care unit. J Perinatal Educ 18(3):23–29

    Article  Google Scholar 

  • Purdy IB, Craig JW, Zeanah P (2015) NICU discharge planning and beyond: recommendations for parent psychosocial support. J Perinatol 35:S24–S28

    Article  Google Scholar 

  • Rainbowtrust.org.uk (2018) Rainbow Trust Children’s Charity. [online]. https://rainbowtrust.org.uk/. Accessed 19 Aug 2018

  • Redshaw M, Rowe R, Henderson J (2014) Listening to parents after stillbirth or the death of their baby after birth. NPEU, Oxford

    Google Scholar 

  • Relf M, Machin L, Archer N (2010) Guidance for bereavement needs assessment in palliative care, 2nd edn. Help the Hospices, London

    Google Scholar 

  • Sands (2016) Pregnancy loss and the death of a baby: Guidelines for professionals, 4th edn

    Google Scholar 

  • Sands.org.uk (2017). Parents and neonatal decisions study: improving communication during conversations about limiting life-sustaining treatment in neonatal intensive care. [online]. https://www.sands.org.uk/our-work/research/studies-we-fund/parents-and-neonatal-decisions-study. Accessed 19 Aug 2018

  • Soricelli BA, Utech CL (1985) Mourning the death of a child; the family and group process. Soc Work 30:423–429

    Article  Google Scholar 

  • Stauber SR, Mahan CK (1987) Successes and struggles of parent support groups in neonatal intensive care units. J Perinatol 7(2):140–144

    CAS  PubMed  Google Scholar 

  • Subhani M, Kanwal I (2012) Digital scrapbooking as a standard of care in neonatal intensive care units: initial experience. Neonatal Netw 31(3):162–168

    Article  Google Scholar 

  • Volling B (2012) Family transitions following the birth of a sibling: an empirical review of changes in the firstborn’s adjustment. Psychol Bull 138(3):497–528

    Article  Google Scholar 

  • Wigert H, Dellenmark Blom M, Bry K (2014) Parents’ experiences of communication with neonatal intensive-care unit staff: an interview study. BMC Pediatr 14(1):304

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Anne Harris .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Harris, A. (2020). Continuing Emotional and Practical Support for the Whole Family. 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_15

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-31877-2_15

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-31876-5

  • Online ISBN: 978-3-030-31877-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics