Evolving technology and scientific advancement have increased the chances of survival of the extremely premature baby; however, such survival can be associated with some severe long-term morbidities.
Research question:
The research investigates the caregiving and ethical dilemmas faced by neonatal nurses when caring for extremely premature babies (defined as ≤24 weeks’ gestation). This article explores the issues arising for neonatal nurses when they considered the philosophical question of ‘what if it was me and my baby’, or what they believed they would do in the hypothetical situation of going into premature labour and delivering an extremely premature baby.
Participants:
Data were collected via a questionnaire to Australian neonatal nurses and semi-structured interviews with 24 neonatal nurses in New South Wales, Australia.
Ethical considerations:
Relevant ethical approvals have been obtained by the researchers.
Findings:
A qualitative approach was used to analyse the data. The theme ‘imagined futures’ was generated which comprised three sub-themes: ‘choice is important’, ‘not subjecting their own baby to treatment’ and ‘nurses and outcome predictions’. The results offer an important and unique understanding into the perceptions of nursing staff who care for extremely premature babies and their family, see them go home and witness their evolving outcomes. The results show that previous clinical and personal experiences led the nurses in the study to choose to have the belief that if in a similar situation, they would choose not to have their own baby resuscitated and subjected to the very treatment that they provide to other babies.
Conclusion:
The theme ‘imagined futures’ offers an overall understanding of how neonatal nurses imagine what the life of the extremely premature baby and his or her family will be like after discharge from neonatal intensive care. The nurses’ past experience has led them to believe that they would not want this life for themselves and their baby, if they were to deliver at 24 weeks’ gestation or less.
TomlinsonMWKaempfJWFergusonLA. Caring for the pregnant woman presenting at periviable gestation: acknowledging the ambiguity and uncertainty. Am J Obstet Gynecol2010; 202(6): 529.e1–529.e6.
GriswoldKJFanaroffJM. An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Pediatrics2010; 125(4): e931–e937.
4.
LantosJDMeadowW. Infants, medical aspects and issues in the care of. In: PostSG (ed.) Encyclopedia of bioethics. 3rd ed. New York: MacMillan, 2004, pp. 1252–1257.
5.
MooreTHennessyEMMylesJ. Neurological and developmental outcome in extremely preterm children born in England in 1995 and 2006: the EPICure studies. Brit Med J2012; 345: e7961.
6.
IacovidouNVarsamiMSyggellouA. Neonatal outcome of preterm delivery. Ann NY Acad Sci2010; 1205: 130–134.
7.
MosterDLieRTMarkestadT. Long-term medical and social consequences of preterm birth. N Engl J Med2008; 359: 262–273.
8.
NeubauerAPVossWKattnerE. Outcome of extremely low birth weight survivors at school age: the influence of perinatal parameters on neurodevelopment. Eur J Pediatr2008; 167(1): 87–95.
9.
ColeCRHansenNIHigginsRD. Very low birth weight preterm infants with surgical short bowel syndrome: incidence, morbidity and mortality, and growth outcomes at 18 to 22 months. Pediatrics2008; 122: e573–e582.
10.
BlancoFSureshGHowardD. Ensuring accurate knowledge of prematurity outcomes for prenatal counselling. Pediatrics2005; 115(4): e478–e487.
11.
DoyleLWAndersonPJ. Adult outcome of extremely preterm infants. Pediatrics2010; 126(2): 342–351.
PerskySKaphingstKAConditCM. Assessing hypothetical scenario methodology in genetic susceptibility testing analog studies: a quantitative review. Genet Med2007; 9(11): 727–738.
14.
GreenJA. Balancing hope with reality: caregiving dilemmas for neonatal nurses in caring for extremely premature babies. PhD Thesis, Flinders University, Adelaide, SA, Australia, 2007.
15.
GreenJDarbyshirePAdamsA. Looking like a proper baby: nurses’ experiences of caring for extremely premature infants. J Clin Nurs2015; 24(1–2): 81–89.
16.
GreenJDarbyshirePAdamsA. A burden of knowledge: a qualitative study of experiences of neonatal intensive care nurses’ concerns when keeping information from parents. J Child Health Care2015; 19(4): 485–494.
17.
GreenJ. Living in hope and desperate for a miracle: NICU nurses perceptions of parental anguish. J Relig Health2015; 54(2): 731–744.
18.
GreenJDarbyshirePAdamsA. Balancing hope with reality: how neonatal nurses manage the uncertainty of caring for extremely premature babies. J Clin Nurs2015; 24(17–18): 2410–2418.
19.
GreenJDarbyshirePAdamsA. It’s agony for us as well Neonatal nurses reflect on iatrogenic pain. Nurs Ethics2016; 23(2): 176–190.
20.
GreenJDarbyshirePAdamsA. The myth of the miracle baby: how neonatal nurses interpret media accounts of babies of extreme prematurity. Nurs Inquiry2015; 22(3): 273–281.
GreenJDarbyshirePAdamsA. Quality versus quantity the complexities of quality of life determinations for neonatal nurses. Nurs Ethics 2016. DOI: 10.1177/0969733014558968.
23.
ArmentroutD. Attitudes/beliefs/feelings held by neonatal nurses toward the care and management of fetal-infants. Neonatal Netw1986; 5(1): 23–29.
24.
Van ManenM. Researching lived experience: human science for an action sensitive pedagogy. New York: State University of New York Press, 1990, p. 9.
25.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol2006; 3: 77–101.
26.
KochT. Establishing rigour in qualitative research: the decision trail. J Adv Nurs2006; 53: 91–100.
27.
StinsonRStinsonP. The long dying of baby Andrew. Boston, MA: Little, Brown and Co., 1983.
SmithLDraperESFieldD. Long-term outcome for the tiniest or most immature babies: survival rates. Semin Fetal Neonatal Med2014; 19(2): 72–77.
30.
SaigalSDoyleLW. An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet2008; 371(9608): 261–269.
31.
BlencoweHCousensSOestergaardMZ. National, regional, and worldwide estimates of preterm birth rates in the year 2010 with time trends since 1990 for selected countries: a systematic analysis and implications. Lancet2012; 379(9832): 2162–2172.
32.
Government of South Australia. South Australian perinatal practice guidelines: perinatal care at the threshold of viability. Adelaide, SA, Australia: South Australian Maternal and Neonatal Clinical Network, 2013, pp. 1–14.
WeissARBinnsHJCollinsJW. Decision-making in the delivery room: a survey of neonatologists. J Perinatol2007; 27(12): 754–760.
36.
DonohuePKBossRDAucottSW. The impact of neonatologists’ religiosity and spirituality on health care delivery for high-risk neonates. J Palliat Med2010; 13(10): 1219–1224.
37.
LawrenceRECurlinFA. Autonomy, religion and clinical decisions: findings from a national physician survey. J Med Ethics2009; 35(4): 214–218.
38.
ParisJJSchreiberMDElias-JonesA. Resuscitation of the preterm infant against parental wishes. Arch Dis Child Fetal Neonatal Ed2005; 90(3): F208–F210.
39.
KühbergerASchulte-MecklenbeckMPernerJ. Framing decisions: hypothetical and real. Organ Behav Hum Dec2002; 89(2): 1162–1175.
40.
D’ArgembeauAMathyA. Tracking the construction of episodic future thoughts. J Exp Psychol Gen2011; 140(2): 258.
41.
SandersMRDonohuePKOberdorfMA. Perceptions of the limit of viability: neonatologists’ attitudes toward extremely preterm infants. J Perinatol1994; 15(6): 494–502.
42.
StreinerDLSaigalSBurrowsE. Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics2001; 108(1): 152–157.
43.
De LeeuwRCuttiniMNadaiM. Treatment choices for extremely preterm infants: an international perspective. J Pediatr2000; 137(5): 608–616.
44.
OeiJAskieLMTobianskyR. Attitudes of neonatal clinicians towards resuscitation of the extremely premature infant: an exploratory survey. J Paediatr Child Health2000; 36(4): 357–362.
45.
JanvierALeblancIBarringtonKJ. Nobody likes premies: the relative value of patients’ lives. J Perinatol2008; 28(12): 821–826.
46.
McHaffieHEFowliePW. Life, death and decisions: doctors and nurses reflect on neonatal practice. Cheshire: Hochland & Hochland Ltd, 1996.
47.
JanvierALantosJDeschenesM. Caregivers attitudes for very premature infants: what if they knew?Acta Paediatr2008; 97(3): 276–279.
48.
JanvierANadeauSDeschenesM. Moral distress in the neonatal intensive care unit: caregiver’s experience. J Perinatol2007; 27(4): 203–208.
49.
LantosJDMilesSHSilversteinMD. Survival after cardiopulmonary resuscitation in babies of very low birth weight: is CPR futile therapy?N Engl J Med1988; 318(2): 91–95.
50.
BarrPCourtmanSP. Cardiopulmonary resuscitation in the newborn intensive care unit. J Paediatr Child Health1998; 34(6): 503–507.
51.
McHaffieHEFowliePW. Should the baby live? The role of nurses in decision making. NT Research1997; 2(4): 271–279.
52.
HarrisonH. Neonatal intensive care: parent’s role in ethical decision making. Birth1986; 13(3): 165–175.
53.
DouglasSMDahnkeMD. Creating an ethical environment for parents and health providers dealing with the treatment dilemmas of neonates at the edge of viability. J Neonatal Nurs2013; 19(1): 33–37.
54.
GallagherKMarlowNEdgleyA. The attitudes of neonatal nurses towards extremely preterm infants. J Adv Nurs2012; 68(8): 1768–1779.
55.
FranceEFLocockLHuntK. Imagined futures: how experiential knowledge of disability affects parents’ decision making about fetal abnormality. Health Expect2012; 15(2): 139–156.
56.
ChaplinJSchweitzerRPerkoulidisS. Experiences of prenatal diagnosis of spina bifida or hydrocephalus in parents who decide to continue with their pregnancy. J Genet Couns2005; 14(2): 151–162.
57.
Redlinger-GrosseKBernhardtBABergK. The decision to continue: the experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. Am J Med Genet2002; 112(4): 369–378.
58.
PetrucelliNWalkerMSchorryE. Continuation of pregnancy following the diagnosis of a fetal sex chromosome abnormality: a study of parents’ counseling needs and experiences. J Genet Couns1998; 7(5): 401–415.
59.
SawyerSMCerritelliBCarterLS. Changing their minds with time: a comparison of hypothetical and actual reproductive behaviors in parents of children with cystic fibrosis. Pediatrics2006; 118(3): e649–e656.
60.
KohlbergL. Stage and sequence. In: GoslinDD (ed.) Handbook of socialization theory and research. Chicago, IL: Rand McNally, 1969, pp. 348–480.
61.
GilliganC. In a different voice. Cambridge, MA: Harvard University Press, 1982.
62.
JaffeeSHydeJS. Gender differences in moral orientation: a meta-analysis. Psychol Bull2000; 126(5): 703–726.
63.
KasuyaRTPolgar-BaileyMPRobbyn TakeuchiMSW. Caregiver burden and burnout. A guide for primary care physicians. Postgrad Med2000; 108(7): 119.
64.
BrettJ. The experience of disability from the perspective of parents of children with profound impairment: is it time for an alternative model of disability?Disabil Soc2002; 17(7): 825–843.
65.
BakerDLDrapelaLA. Mostly the mother: concentration of adverse employment effects on mothers of children with autism. Soc Sci J2010; 47(3): 578–592.
66.
PinquartMSörensenS. Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. J Gerontol B Psychol Sci Soc Sci2006; 61(1): P33–P45.
67.
FrainLRenYMeadowA. Certainty, uncertainty, and accuracy of daily predictions of non-survival in the NICU: we’re often wrong but rarely in doubt. Pediatr Res1998; 43: 29–39.
68.
BruneroSStein-ParburyJ. The effectiveness of clinical supervision in nursing: an evidenced based literature review. Aust J Adv Nurs2008; 25(3): 86–94.
