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Am J Perinatol 2022; 39(12): 1341-1347
DOI: 10.1055/s-0040-1722344
Original Article

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus

Rebecca A. Dorner
1   Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Eastern Virginia Medical School, Norfolk, Virginia
2   Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Children's Hospital of The King's Daughters, Norfolk, Virginia
,
Renee D. Boss
3   Division of Perinatal-Neonatal Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland
4   Johns Hopkins University, Phoebe R. Berman Institute of Bioethics, Baltimore, Maryland
,
Vera J. Burton
5   Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, Maryland
6   Department of Neurology, Johns Hopkins University School of Medicine, Baltimore, Maryland
,
Katherine Raja
7   University of Maryland School of Medicine, Baltimore, Maryland
,
Shenandoah Robinson
8   Department of Pediatric Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, Maryland
,
Monica E. Lemmon
9   Division of Pediatric Neurology, Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina
10   Duke-Margolis Center for Health Policy, Durham, North Carolina
› Author Affiliations Funding This work was supported by the NIH T32 Training Grant (T32HL125239–03) awarded to R.A.D. M.E.L. reports grants from the National Institute of Neurological Disorders and Stroke of the National Institutes of Health (K23NS116453). The authors have indicated they have no financial relationships or potential conflicts of interest relevant to this article to disclose.
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Abstract

Objective This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond.

Study Design This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach.

Results Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase.

Conclusion Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus.

Key Points

  • Infants with posthemorrhagic hydrocephalus are at risk for adverse neurodevelopmental outcomes.

  • The parent experience of caring for a child with posthemorrhagic hydrocephalus is not well-described. In this interview study, parents described uncertainty, isolation, and hypervigilance.

  • These findings call for structured NICU counseling and longitudinal family supports after discharge.

Keywords

neonatal intensive care unit - hydrocephalus - parents - qualitative research


Publication History

Received: 13 October 2020

Accepted: 01 December 2020

Article published online:
17 January 2021

© 2021. Thieme. All rights reserved.

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  • References

  • 1 Srinivasakumar P, Limbrick D, Munro R. et al. Posthemorrhagic ventricular dilatation-impact on early neurodevelopmental outcome. Am J Perinatol 2013; 30 (03) 207-214
    PubMedGoogle Scholar
  • 2 Adams-Chapman I, Hansen NI, Stoll BJ, Higgins R. NICHD Research Network. Neurodevelopmental outcome of extremely low birth weight infants with posthemorrhagic hydrocephalus requiring shunt insertion. Pediatrics 2008; 121 (05) e1167-e1177
    CrossrefPubMedGoogle Scholar
  • 3 Allen MC. Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008; 21 (02) 123-128
    CrossrefPubMedGoogle Scholar
  • 4 Holwerda JC, Van Braeckel KNJA, Roze E. et al. Functional outcome at school age of neonatal post-hemorrhagic ventricular dilatation. Early Hum Dev 2016; 96: 15-20
    CrossrefPubMedGoogle Scholar
  • 5 Roze E, Van Braeckel KN, van der Veere CN, Maathuis CG, Martijn A, Bos AF. Functional outcome at school age of preterm infants with periventricular hemorrhagic infarction. Pediatrics 2009; 123 (06) 1493-1500
    CrossrefPubMedGoogle Scholar
  • 6 Brouwer A, Groenendaal F, van Haastert IL, Rademaker K, Hanlo P, de Vries L. Neurodevelopmental outcome of preterm infants with severe intraventricular hemorrhage and therapy for post-hemorrhagic ventricular dilatation. J Pediatr 2008; 152 (05) 648-654
    CrossrefPubMedGoogle Scholar
  • 7 Goldstein RF, Cotten CM, Shankaran S, Gantz MG, Poole WK. Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Influence of gestational age on death and neurodevelopmental outcome in premature infants with severe intracranial hemorrhage. J Perinatol 2013; 33 (01) 25-32
    CrossrefPubMedGoogle Scholar
  • 8 Ment LR, Vohr B, Allan W. et al. The etiology and outcome of cerebral ventriculomegaly at term in very low birth weight preterm infants. Pediatrics 1999; 104 (2 Pt 1): 243-248
    CrossrefPubMedGoogle Scholar
  • 9 Tsai AJ, Lasky RE, John SD, Evans PW, Kennedy KA. Predictors of neurodevelopmental outcomes in preterm infants with intraparenchymal hemorrhage. J Perinatol 2014; 34 (05) 399-404
    CrossrefPubMedGoogle Scholar
  • 10 Lemmon ME, Donohue PK, Parkinson C, Northington FJ, Boss RD. Communication challenges in neonatal encephalopathy. Pediatrics 2016; 138 (03) e20161234
    CrossrefPubMedGoogle Scholar
  • 11 Boss RD, Lemmon ME, Arnold RM, Donohue PK. Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors. J Perinatol 2017; 37 (11) 1224-1229
    CrossrefPubMedGoogle Scholar
  • 12 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15 (09) 1277-1288
    Google Scholar
  • 13 Allen MC, Cristofalo EA, Kim C. Outcomes of preterm infants: morbidity replaces mortality. Clin Perinatol 2011; 38 (03) 441-454
    CrossrefPubMedGoogle Scholar
  • 14 Thomson J, Shah SS, Simmons JM. et al. Financial and social hardships in families of children with medical complexity. J Pediatr 2016; 172: 187-193.e1
    CrossrefPubMedGoogle Scholar
  • 15 Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med 2011; 165 (11) 1020-1026
    CrossrefPubMedGoogle Scholar
  • 16 Boss RD, Raisanen JC, Detwiler K. et al. Lived experience of pediatric home health care among families of children with medical complexity. Clin Pediatr (Phila) 2020; 59 (02) 178-187
    CrossrefPubMedGoogle Scholar
  • 17 Agajany N, Gigi M, Ross J. et al. The impact of neonatal posthemorrhagic hydrocephalus of prematurity on family function at preschool age. Early Hum Dev 2019; 137: 104827
    CrossrefPubMedGoogle Scholar
  • 18 Smith J, Cheater F, Bekker H. Parents' experiences of living with a child with hydrocephalus: a cross-sectional interview-based study. Health Expect 2015; 18 (05) 1709-1720
    CrossrefPubMedGoogle Scholar
  • 19 Lemmon ME, Donohue PK, Williams EP, Brandon D, Ubel PA, Boss RD. No question too small: development of a question prompt list for parents of critically ill infants. J Perinatol 2018; 38 (04) 386-391
    CrossrefPubMedGoogle Scholar
  • 20 Riva-Cambrin J, Kestle JRW, Rozzelle CJ. et al; Hydrocephalus Clinical Research Network. Predictors of success for combined endoscopic third ventriculostomy and choroid plexus cauterization in a North American setting: a Hydrocephalus Clinical Research Network study. J Neurosurg Pediatr 2019; (e-pub ahead of print) DOI: 10.3171/2019.3.PEDS18532.
    CrossrefPubMedGoogle Scholar
  • 21 Lemmon ME, Huffstetler H, Barks MC. et al. Neurologic outcome after prematurity: perspectives of parents and clinicians. Pediatrics 2019; 144 (01) e20183819
    CrossrefPubMedGoogle Scholar
  • 22 Dorner RA, Boss RD, Burton VJ, Raja K, Lemmon ME. Parent preferences for neurodevelopmental screening in the neonatal intensive care unit. Dev Med Child Neurol 2020; 62 (04) 500-505
    CrossrefPubMedGoogle Scholar
  • 23 Ackerman LL, Fulkerson DH, Jea A, Smith JL. Parent/guardian knowledge regarding implanted shunt type, setting, and symptoms of malfunction/infection. J Neurosurg Pediatr 2018; 21 (04) 359-366
    CrossrefPubMedGoogle Scholar
  • 24 Wright-Sexton LA, Compretta CE, Blackshear C, Henderson CM. Isolation in parents and providers of children with chronic critical illness. Pediatr Crit Care Med 2020; 21 (08) e530-e537
    CrossrefPubMedGoogle Scholar
  • 25 Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics 2006; 117 (01) e48-e60
    CrossrefPubMedGoogle Scholar
  • 26 Munns A, Watts R, Hegney D, Walker R. Effectiveness and experiences of families and support workers participating in peer-led parenting support programs delivered as home visiting programs: a comprehensive systematic review. JBI Database Syst Rev Implement Reports 2016; 14 (10) 167-208
    CrossrefPubMedGoogle Scholar