References

Alderdice F, Gargan P, McCall E, Franck L Online information for parents caring for their premature baby at home: A focus group study and systematic web search. Health Expect. 2018; 21:(4)741-751 https://doi.org/10.1111/hex.12670

Arthur J, Waring M, Coe R, Hedges L Research Methods and Methodologies in Education.London: SAGE Publications Ltd; 2012

Aveyard H, Payne S, Preston N A Post-graduate's Guide to Doing a Literature Review in Health and Social Care.Berkshire: Open University Press; 2016

Aydon L, Hauck Y, Murdoch J, Siu D, Sharp M Transition from hospital to home: Parents' perception of their preparation and readiness for discharge with their preterm infant. J Clin Nurs. 2018; 27:(1-2)269-277 https://doi.org/10.1111/jocn.13883

Belfort MB, Anderson PJ, Nowak VA, Lee KJ, Molesworth C, Thompson DK, Doyle LW, Inder TE ‘Breast milk feeding, brain development, and neurocognitive outcomes: a 7-year longitudinal study in infants born at less than 30 weeks' gestation’. J Pediatr. 2016; 177:133-139.e1 https://doi.org/10.1016/j.jpeds.2016.06.045

Benzies KM, Magill-Evans J Through the eyes of a new dad: experiences of first-time fathers of late-preterm infants. Infant Ment Health J. 2015; 36:(1)78-87 https://doi.org/10.1002/imhj.21489

Bettany-Saltikov J How to do a systematic literature review in Nursing: A step by step guide.Berkshire: Open University Press; 2012

Bettany-Saltikov J, McSherry R How to do a systematic literature review in nursing: a step by step guide, 2nd edn. Berkshire: Open University Press; 2016

Bliss. Infant mortality rate in England and Wales increases for the first time in five years. 2018. https://www.bliss.org.uk/news/infant-mortality-rate-in-england-and-wales-increases-for-the-first-time-in-five-years-bliss-responds (accessed 14 January 2025)

Bowles J, Jnah A, Newberry D, Hubbard C, Roberston T Infants with technology dependence: Facilitating the road to home. Advances in Neonatal Care. 2016; 16:(6)424-429

Boykova M Life after discharge: what parents of preterm infants say about their transition home. Newborn and Infant Nursing Reviews. 2016; 16:58-65

Brandon D., Tully K, Silva S, Malcolm W, Murtha A, Turner B, Holditch-Davis D Emotional Responses of Mothers of Late-Preterm and Term Infants'. Journal of Obstetric, Gynecologic & Neonatal Nursing. 2011; 40:(6)719-731

Braun V, Clarke V Using thematic analysis in psychology. Qualitative Research in Psychology. 2006; 3:77-101

Braun V, Clarke V Thematic Analysis. APA Handbook of Research Methods In Psychology. 2012; 2:57-71

Thematic Analysis. A Reflexive Approach. 2021. https://www.psych.auckland.ac.nz/en/about/thematic-analysis.html#af953c2f208a5c63944b74a75e437ba5 (accessed 14 January 2025)

Breivold K, Hjaelmhult E, Sjöström-Strand A, Hallström IK Mothers' experiences after coming home from the hospital with a moderately to late preterm infant - a qualitative study. Scand J Caring Sci. 2019; 33:(3)632-640 https://doi.org/10.1111/scs.12656

Busse M, Stromgren K, Thorngate L, Thomas K Parents' response to stress in the neonatal intensive care unit. Critical Care Nurse. 2013; 33:(4)52-60

Butler A, Hall H, Copnell B A Guide to Writing a Qualitative Systematic Review Protocol to Enhance Evidence-Based Practice in Nursing and Health Care’. Worldviews on Evidence-Based Nursing. 13:(3)241-249

Community Health Services Explained. 2019. https://www.kingsfund.org.uk/publications/community-health-services-explained (accessed 14 January 2025)

Cooke A, Smith D, Booth A Beyond PICO: The Spider tool for Qualitative Evidence Synthesis. Qualitative Health Research. 2012; 22:(10)1435-1443

Critical Appraisal Skills Programme. CASP Qualitative Checklist. 2018. https://casp-uk.net/wp-content/uploads/2018/01/CASP-Qualitative-Checklist-2018.pdf (accessed 14 January 2025)

Currie G, Dosani A, Premji S, Reilly S, Lodha A, Young M Caring for late preterm infants: public health nurses' experiences. BMC Nursing. 2018; 17:(1)

Davis-Strauss S, Johnson E, Lubbe W Information and Support Needs of Parents with Premature Infants: An Integrative Review. Journal of Early Intervention. 2020; 43:(3)199-220

Delgado Galeano M, Villamizar Carvajal B Coping in Mothers of Premature Newborns After Hospital Discharge. Newborn and Infant Nursing Reviews. 2016; 16:(3)105-109

den Boer SL, Schipper J Feeding and drinking skills in preterm and low birth weight infants compared to full term infants at a corrected age of nine months. Early Human Development. 2013; 89:(6)445-447

Introduction to systematic reviews: online learning module Cochrane Training. 2016. https://training.cochrane.org/interactivelearning/module-1-introduction-conducting-systematic-reviews (accessed 14 January 2025)

Department of Health and Social Care. The NHS Toolkit for High Quality Neonatal Services. 2009. http://www.londonneonatalnetwork.org.uk/wp-content/uploads/2015/09/Toolkit-2009.pdf (accessed 14 January 2025)

Dosani A, Hemraj J, Premji S, Currie G, Reilly S, Lodha A, Young M, Hall M Breastfeeding the late preterm infant: experiences of mothers and perceptions of public health nurses. International Breastfeeding Journal. 2017; 12:(1)1-10

Ericson J, Palmér L Mothers of preterm infants' experiences of breastfeeding support in the first 12 months after birth: A qualitative study. Birth. 2019; 46:(1)129-136

Fatherhood Institute. Who's the Bloke in the room? Fathers during pregnancy and at the birth in the UK. 2018. http://www.fatherhoodinstitute.org/wp-content/uploads/2017/12/Whos-the-Bloke-in-the-Room-Full-Report.pdf (accessed 14 January 2025)

Fagan J, Barnett M The relationship between maternal gatekeeping, paternal competence, mothers' attitudes about the father role and father involvement. Journal of Family Issues. 2003; 24:1020-1043

Forray A Substance use during pregnancy. F1000Res. 2016; 5 https://doi.org/10.12688/f1000research.7645.1

Franck L, McNulty A, Alderdice F The perinatal-neonatal care journey for parents of preterm infants: what is working and what can be improved. Journal of Perinatal Neonatal Nursing. 2017; 31:244-255

Franck L, McNulty A, Alderdice F The perinatal-neonatal care journey for parents of preterm infants: what is working and what can be improved. Journal of Perinatal Neonatal Nursing. 2017; 31:244-255

Garfield C, Lee Y, Kim H Paternal and maternal concerns for their very low-birth-weight infants transitioning from the NICU to home. Journal of Perinatal and Neonatal Nursing. 2014; 28:305-312

Glass HC, Costarino AT, Stayer SA, Brett CM, Cladis F, Davis PJ Outcomes for extremely premature infants. Anesth Analg. 2015; 120:(6)1337-51 https://doi.org/10.1213/ANE.0000000000000705

Granero-Molina J, Fernández Medina IM, Fernández-Sola C, Hernández-Padilla JM, Jiménez Lasserrotte MDM, López Rodríguez MDM Experiences of Mothers of Extremely Preterm Infants after Hospital Discharge. J Pediatr Nurs. 2019; 45:e2-e8 https://doi.org/10.1016/j.pedn.2018.12.003

Grundvig Nylund A, Gonzalez Lindh M, Ahlsson F, Thernström Blomqvist Y Parents experiences of feeding their extremely preterm children during the first 2-3 years - A qualitative study. Acta Paediatr. 2020; 109:(5)976-981 https://doi.org/10.1111/apa.15060

Håkstad RB, Obstfelder A, Øberg GK Parents' Perceptions of Primary Health Care Physiotherapy With Preterm Infants: Normalization, Clarity, and Trust. Qual Health Res. 2016; 26:(10)1341-50 https://doi.org/10.1177/1049732315608137

Hartzell T, Fineout-Overholt E Finding relevant evidence to answer clinical questions, 4th edn. In: Melnyk M, Fineout-Overholt E (eds). Netherlands: Wolters Kluwer; 2019

Hill A, Pallitto C, McCleary-Sills J, Garcia-Moreno C A systematic review and meta-analysis of intimate partner violence during pregnancy and selected birth outcomes. Int J Gynaecol Obstet. 2016; 133:(3)269-76 https://doi.org/10.1016/j.ijgo.2015.10.023

The Perinatal Dad. Engaging Fathers in the Perinatal Period to Support Breastfeeding. 2019. http://www.fatherhoodinstitute.org/wp-content/uploads/2021/10/Howl_J_Report_2017_Final.pdf (accessed 14 January 2025)

Institute of Health Visiting. Health Visitor workforce numbers in England reach an all-time low. 2022. https://ihv.org.uk/news-and-views/news/health-visitor-workforce-numbers-in-england-reach-an-all-time-low (accessed 14 January 2025)

Kair L, Flaherman V, Newby K, Colaizy T The Experience of Breastfeeding the Late Preterm Infant: A Qualitative Study. Breastfeeding Medicine. 2015; 10:(2)102-106

Ketefian S, Redman RW A critical examination of developments in nursing doctoral education in the United States. Rev Lat Am Enfermagem. 2015; 23:(3)363-71 https://doi.org/10.1590/0104-1169.0797.2566

Kozuki N, Lee AC, Silveira MF, Sania A, Vogel JP, Adair L, Barros F, Caulfield LE, Christian P, Fawzi W, Humphrey J, Huybregts L, Mongkolchati A, Ntozini R, Osrin D, Roberfroid D, Tielsch J, Vaidya A, Black RE, Katz J The associations of parity and maternal age with small-for-gestational-age, preterm, and neonatal and infant mortality: a meta-analysis. BMC Public Health. 2013; 13:(Suppl 3) https://doi.org/10.1186/1471-2458-13-S3-S2

Kugelman A, Colin AA Late preterm infants: near term but still in a critical developmental time period. Pediatrics. 2013; 132:(4)741-51 https://doi.org/10.1542/peds.2013-1131

Lamichhane DK, Leem JH, Lee JY, Kim HC A meta-analysis of exposure to particulate matter and adverse birth outcomes. Environ Health Toxicol. 2015; 30 https://doi.org/10.5620/eht.e2015011

Lasiuk GC, Comeau T, Newburn-Cook C Unexpected: an interpretive description of parental traumas' associated with preterm birth. BMC Pregnancy Childbirth. 2013; 13:(Suppl 1) https://doi.org/10.1186/1471-2393-13-S1-S13

Lincoln Y, Lynham S, Guba E Paradigmatic controversies, contradictions and emerging influences, revisited. The Sage Handbook of Qualitative Research.: Sage Publications; 2011

Liem S, Mol B, Abu-Hanna A, Ravelli A, Schaaf J Ethnic and Racial Disparities in the Risk of Preterm Birth: A Systematic Review and Meta-Analysis. American Journal of Perinatology. 2012; 30:(6)433-450

Mactier H, Bates SE, Johnston T, Lee-Davey C, Marlow N, Mulley K, Smith LK, To M, Wilkinson D Perinatal management of extreme preterm birth before 27 weeks of gestation: a framework for practice. Arch Dis Child Fetal Neonatal Ed. 2020; 105:(3)232-239 https://doi.org/10.1136/archdischild-2019-318402

Maguire M, Delahunt B Doing a Thematic Analysis: A practical, step by step guide for learning and teaching scholars. All Ireland Journal of Teaching and Learning in Higher Education. 2017; 9:(3)3351-3354

Manktelow BN, Seaton SE, Field DJ, Draper ES Population-based estimates of in-unit survival for very preterm infants. Pediatrics. 2013; 131:(2)e425-32 https://doi.org/10.1542/peds.2012-2189

McCormick MC, Litt JS, Smith VC, Zupancic JA Prematurity: an overview and public health implications. Annu Rev Public Health. 2011; 32:367-79 https://doi.org/10.1146/annurev-publhealth-090810-182459

Moher D, Liberati A, Tetzlaff J, Altman DG Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009; 6:(7) https://doi.org/10.1371/journal.pmed.1000097

Murdoch MR, Franck LS Gaining confidence and perspective: a phenomenological study of mothers' lived experiences caring for infants at home after neonatal unit discharge. J Adv Nurs. 2012; 68:(9)2008-20 https://doi.org/10.1111/j.1365-2648.2011.05891.x

Forward. EU Benchmarking Report. Too little, too late? Why Europe should do more for pre-term infants. 2010. https://www.efcni.org/wp-content/uploads/2019/06/EFCNI_report_too_little_too_late_light.pdf (accessed 14 January 2025)

NHS England. The NHS Long Term Plan. 2019. https://www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-version-1.2.pdf (accessed 14 January 2025)

National Maternity Review. Better Births. Improving outcomes of maternity services in England. A five year forward view for maternity care. 2017. https://www.england.nhs.uk/wp-content/uploads/2016/02/national-maternity-review-report.pdf (accessed 14 January 2025)

Niu W, Xu X, Zhang H, Zhang Y, Ni S, Liu T, Li Q, Lai C, Sun Y Breastfeeding improves dynamic reorganization of functional connectivity in preterm infants: a temporal brain network study. Med Biol Eng Comput. 2020; 58:(11)2805-2819 https://doi.org/10.1007/s11517-020-02244-3

Office for National Statistics. Pregnancy and ethnic factors influencing births and infant mortality. 2017. https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/causesofdeath/datasets (accessed 14 January 2025)

Parahoo K Nursing research: Principals, process and issues.Basingstoke: Palgrave Macmillan; 2014

Pautasso M Ten simple rules for writing a literature review. PLoS Comput Biol. 2013; 9:(7)

Petty J, Whiting L, Green J, Fowler C Parents' views on preparation to care for extremely premature infants at home. Nurs Child Young People. 2018; https://doi.org/10.7748/ncyp.2018.e1084

Premji S, Young M, Rogers C, Reilly S Transitions in the Early-Life of Late Preterm Infants. Journal of Perinatal & Neonatal Nursing. 2012; 26:(1)57-68

Premji SS, Currie G, Reilly S, Dosani A, Oliver LM, Lodha AK, Young M A qualitative study: Mothers of late preterm infants relate their experiences of community-based care. PLoS One. 2017; 12:(3) https://doi.org/10.1371/journal.pone.0174419

Premji SS, Pana G, Currie G, Dosani A, Reilly S, Young M, Hall M, Williamson T, Lodha AK Mother's level of confidence in caring for her late preterm infant: A mixed methods study. J Clin Nurs. 2018; 27:(5-6)e1120-e1133 https://doi.org/10.1111/jocn.14190

Premji SS, Reilly S, Currie G, Dosani A, Oliver LM, Lodha AK, Young M, Hall M, Williamson T Experiences, mental well-being and community-based care needs of fathers of late preterm infants: A mixed-methods pilot study. Nurs Open. 2019; 7:(1)127-136 https://doi.org/10.1002/nop2.370

Sapkota A, Chelikowsky A, Nachman K, Cohen A, Ritz B Exposure to particulate matter and adverse birth outcomes: a comprehensive review and meta-analysis. Air Quality, Atmosphere & Health. 2010; 5:(4)369-381

Seppänen AV, Sauvegrain P, Draper ES, Toome L, El Rafei R, Petrou S, Barros H, Zimmermann LJI, Cuttini M, Zeitlin J Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study. Pediatr Res. 2021; 89:(4)1004-1012 https://doi.org/10.1038/s41390-020-01120-y

Seaton SE, Barker L, Draper ES, Abrams KR, Modi N, Manktelow BN Estimating neonatal length of stay for babies born very preterm. Arch Dis Child Fetal Neonatal Ed. 2019; 104:(2)F182-F186 https://doi.org/10.1136/archdischild-2017-314405

Smith LK, van Blankenstein E, Fox G, Seaton SE, Martínez-Jiménez M, Petrou S, Battersby C Effect of national guidance on survival for babies born at 22 weeks' gestation in England and Wales: population based cohort study. BMJ Med. 2023; 2:(1) https://doi.org/10.1136/bmjmed-2023-000579

Staneva A, Bogossian F, Pritchard M, Wittkowski A The effects of maternal depression, anxiety, and perceived stress during pregnancy on preterm birth: A systematic review. Women Birth. 2015; 28:(3)179-93 https://doi.org/10.1016/j.wombi.2015.02.003

Stern C, Jordan Z, McArthur A Developing the review question and inclusion criteria. Am J Nurs. 2014; 114:(4)53-6 https://doi.org/10.1097/01.NAJ.0000445689.67800.86

The Smallest Things. Life after Neonatal Care 2017 Report. 2017. https://static1.squarespace.com/static/5da087447ccbad5c20ff9233/t/5dcf035d6ad93f5f5f2347fb/1573847906764/life-after-nicu-report-2017.pdf (accessed 14 January 2025)

Premature Babies and Their Problems. 2021. https://patient.info/doctor/premature-babies-and-their-problems#ref-9 (accessed 14 January 2025)

Twins And Multiple Births Association. NICE works: The final report. 2019. https://twinstrust.org/static/afcc44b3-776e-4341-8a16e9bd990c3425/NICE-works-final-report.pdf (accessed 14 January 2025)

Vaismoradi M, Jones J, Turunen H, Snelgrove S Theme development in qualitative content analysis and thematic analysis. Journal of Nursing Education and Practice. 2016; 6:(5)100-110

Vogel JP, Chawanpaiboon S, Moller AB, Watananirun K, Bonet M, Lumbiganon P The global epidemiology of preterm birth. Best Pract Res Clin Obstet Gynaecol. 2018; 52:3-12 https://doi.org/10.1016/j.bpobgyn.2018.04.003

Vos AA, Posthumus AG, Bonsel GJ, Steegers EA, Denktaş S Deprived neighborhoods and adverse perinatal outcome: a systematic review and meta-analysis. Acta Obstet Gynecol Scand. 2014; 93:(8)727-40 https://doi.org/10.1111/aogs.12430

Waldenström U, Aasheim V, Nilsen ABV, Rasmussen S, Pettersson HJ, Shytt E Adverse pregnancy outcomes related to advanced maternal age compared with smoking and being overweight. Obstet Gynecol. 2014; 123:(1)104-112 https://doi.org/10.1097/AOG.0000000000000062

Parenting and Prematurity: Understanding Parent Experience and Preferences for Support. https://eds-a-ebscohost-com.ezproxy.derby.ac.uk/eds/pdfviewer/pdfviewer?vid=3&sid=e8da2544-421d-4c6b-a9e4-c09c49a8b99a%40sdc-v-sessmgr01 (accessed 14 January 2025)

World Health Organization. Born Too Soon. The Global Action Report on Preterm Birth. 2012. https://www.who.int/pmnch/media/news/2012/201204_borntoosoon-report.pdf (accessed 14 January 2025)

World Health Organization. Preterm birth. 2018. https://www.who.int/news-room/fact-sheets/detail/preterm-birth (accessed 14 January 2025)

World Health Organization. Newborn health in the Western Pacific. 2021. https://www.who.int/westernpacific/health-topics/newborn-health (accessed 14 January 2025)

Parents' experiences of care for premature infants in the community

02 January 2025
Volume 2 · Issue 1

Abstract

The rates of premature infants born in the UK at 22 weeks' gestation and given life support have increased three-fold in England and Wales following changes to NHS guidance for the treatment of extreme prematurity. These infants can have life-long disabilities and long-standing health or developmental issues; consequently, there is an increasing demand for community professionals to support this vulnerable and growing population. The aim of this literature review was to explore parents' experiences of community care after their premature infant is discharged home. After thematic analysis, three superordinate themes emerged: there is a lack of effective service provision for preterm infants and their parents in the community; there is a gap in the knowledge base of community professionals relating to preterm infants and; parents commend a multidisciplinary approach to their preterm infant and ongoing health needs. The review concludes that there is a need for enhanced community support and strengthening of community services for premature infants and their parents following discharge home. This is the first of a two-part article, the second of which will be published in a forthcoming issue.

Prematurity can be defined as babies being born alive before 37 weeks of pregnancy (World Health Organization [WHO], 2018). It equates to 7% of all births in the UK (Office for National Statistics, 2017) and is categorised based on birth gestational age as extremely preterm (<28 weeks), very preterm (28–32 weeks) and moderate-to-late preterm (32–37 weeks) (WHO, 2018). Preterm birth can be provider-initiated (caesarean or induced labour) or spontaneous (Vogel et al, 2018). There continues to be a rise in the number of extremely preterm births recorded (Bliss, 2018). Furthermore, there has also been an increase in rates of multiple births which are seven times more likely to need admission due to prematurity (Bliss, 2018; Twins and Multiple Births Association, 2019).

Register now to continue reading

Thank you for visiting Journal of Child Health and reading some of our peer-reviewed resources for children’s health professionals. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to our clinical or professional articles

  • New content and clinical newsletter updates each month