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Well-being in parents of infants with neurological conditions: from birth to 6 months after discharge

Abstract

Objective

Describe the well-being of parents of infants during intensive care unit (ICU) admission through 6 months after discharge.

Study design

Cohort study of infants with neurological conditions admitted to the ICU between 2018 and 2020 whose parents completed surveys at enrollment, discharge, and 6 months after discharge.

Results

40 mothers and 21 fathers of 40 infants were enrolled. Abnormal anxiety scores were most common at enrollment for mothers (58%), and at 6 months post discharge for fathers (71%). Abnormal sleep was most common at enrollment for mothers (75%), and at discharge for fathers (73%).

Post traumatic stress disorder (PTSD) scores were abnormal for 47% of mothers and 33% of fathers.

Conclusion

Parents of infants with neurologic conditions are at risk of poor well-being, including symptoms of anxiety, PTSD, and impaired physical function. Further studies assessing the optimal timing for interventions are needed to improve parental well-being.

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Data availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

References

  1. Franck LS, Shellhaas RA, Lemmon ME, Sturza J, Barnes M, Brogi T, et al. Parent mental health and family coping over 2 years after the birth of a child with acute neonatal seizures. Children. 2021;9:2.

  2. Franck LS, Shellhaas RA, Lemmon M, Sturza J, Soul JS, Chang T, et al. Associations between infant and parent characteristics and measures of family well-being in neonates with seizures: a cohort study. J Pediatr. 2020;221:64–71 e4.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Lemmon ME, Barks MC, Bernstein S, Davis JK, Jiao MG, Kaye EC, et al. Prognostic discussion for infants with neurologic conditions: qualitative analysis of family conferences. Ann Neurol. 2022;92:699–709.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  4. Lemmon M, Glass H, Shellhaas RA, Barks MC, Bailey B, Grant K, et al. Parent experience of caring for neonates with seizures. Arch Dis Child Fetal Neonatal Ed. 2020;105:634–9.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40:618–24.

    Article  PubMed  Google Scholar 

  6. Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics. 2009;50:131–7.

    Article  PubMed  Google Scholar 

  7. Murthy S, Haeusslein L, Bent S, Fitelson E, Franck LS, Mangurian C. Feasibility of universal screening for postpartum mood and anxiety disorders among caregivers of infants hospitalized in NICUs: a systematic review. J Perinatol. 2021;41:1811–24.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Smith AM, Grzywacz JG. Health and well-being in midlife parents of children with special health needs. Fam Syst Health. 2014;32:303–12.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Cheshire A, Barlow JH, Powell LA. The psychosocial well-being of parents of children with cerebral palsy: a comparison study. Disabil Rehabil. 2010;32:1673–7.

    Article  PubMed  Google Scholar 

  10. Field T. Postnatal anxiety prevalence, predictors and effects on development: a narrative review. Infant Behav Dev. 2018;51:24–32.

    Article  PubMed  Google Scholar 

  11. Gerrity C, Farley S, Barks MC, Ubel PA, Brandon D, Pollak KI, et al. Decision making for infants with neurologic conditions. J Child Neurol. 2022;37:202–9.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Barlet MH, Ubel PA, Weinfurt KP, Glass HC, Pollak KI, Brandon DH, et al. Decisional satisfaction, regret, and conflict among parents of infants with neurologic conditions. J Pediatr. 2022;245:81–8 e3.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Hays RD, Spritzer KL, Schalet BD, Cella D. PROMIS((R))-29 v2.0 profile physical and mental health summary scores. Qual Life Res. 2018;27:1885–91.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Busse M, Stromgren K, Thorngate L, Thomas KA. Parents’ responses to stress in the neonatal intensive care unit. Crit Care Nurse. 2013;33:52–9.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Motlagh H. Impact of event scale-revised. J Physiother. 2010;56:203.

    Article  PubMed  Google Scholar 

  16. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5-TR. 5th edition, Washington: American Psychiatric Association Publishing; 2022.

  17. Asukai N, Kato H, Kawamura N, Kim Y, Yamamoto K, Kishimoto J, et al. Reliability and validity of the Japanese-language version of the impact of event scale-revised (IES-R-J): four studies of different traumatic events. J Nerv Ment Dis. 2002;190:175–82.

    Article  PubMed  Google Scholar 

  18. PROMIS® Score Cut Points https://www.healthmeasures.net/ Available from: https://www.healthmeasures.net/score-and-interpret/interpret-scores/promis/promis-score-cut-points.

  19. Meaningful Change for PROMIS® Available from: https://www.healthmeasures.net/score-and-interpret/interpret-scores/promis/meaningful-change.

  20. Creamer M, Bell R, Failla S. Psychometric properties of the Impact of Event Scale - Revised. Behav Res Ther. 2003;41:1489–96.

    Article  PubMed  Google Scholar 

  21. Kawamura N, Kim Y, Asukai N. Suppression of cellular immunity in men with a past history of posttraumatic stress disorder. Am J Psychiatry. 2001;158:484–6.

    Article  CAS  PubMed  Google Scholar 

  22. StataCorp. Stata Statistical Software: Release 17. College Station, TX: StataCorp LLC; 2021.

  23. Senaratne R, Van Ameringen M, Mancini C, Patterson B. The burden of anxiety disorders on the family. J Nerv Ment Dis. 2010;198:876–80.

    Article  PubMed  Google Scholar 

  24. Amrock SM, Weitzman M. Parental psychological distress and children’s mental health: results of a national survey. Acad Pediatr. 2014;14:375–81.

    Article  PubMed  Google Scholar 

  25. Melnyk BM, Feinstein NF, Alpert-Gillis L, Fairbanks E, Crean HF, Sinkin RA, et al. Reducing premature infants’ length of stay and improving parents’ mental health outcomes with the creation of opportunities for parent empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial. Pediatrics. 2006;118:e1414–27.

    Article  PubMed  Google Scholar 

  26. McCusker CG, Doherty NN, Molloy B, Rooney N, Mulholland C, Sands A, et al. A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child Care Health Dev. 2010;36:110–7.

    Article  CAS  PubMed  Google Scholar 

  27. Lannes A, Bui E, Arnaud C, Raynaud JP, Revet A. Preventive interventions in offspring of parents with mental illness: a systematic review and meta-analysis of randomized controlled trials. Psychol Med. 2021;51:2321–36.

    Article  PubMed  Google Scholar 

  28. Pryce P, Gangopadhyay M, Edwards JD. Parental adverse childhood experiences and post-PICU stress in children and parents. Pediatr Crit Care Med. 2023;24:1022–32.

    Article  PubMed  Google Scholar 

  29. McKeown L, Burke K, Cobham VE, Kimball H, Foxcroft K, Callaway L. The Prevalence of PTSD of mothers and fathers of high-risk infants admitted to NICU: a systematic review. Clin Child Fam Psychol Rev. 2023;26:33–49.

    Article  PubMed  Google Scholar 

  30. Johnson Rolfes J, Paulsen M. Protecting the infant-parent relationship: special emphasis on perinatal mood and anxiety disorder screening and treatment in neonatal intensive care unit parents. J Perinatol. 2022;42:815–8.

    Article  PubMed  Google Scholar 

  31. Sadler EM, Okito O, Soghier L. Addressing caregiver mental health in the neonatal ICU. Curr Opin Pediatr. 2023;35:390–7.

    Article  PubMed  Google Scholar 

  32. Glasser S, Lerner-Geva L. Focus on fathers: paternal depression in the perinatal period. Perspect Public Health. 2019;139:195–8.

    Article  CAS  PubMed  Google Scholar 

  33. Pinheiro RT, Magalhães PV, Horta BL, Pinheiro KA, da Silva RA, Pinto RH. Is paternal postpartum depression associated with maternal postpartum depression? Population-based study in Brazil. Acta Psychiatr Scand. 2006;113:230–2.

    Article  CAS  PubMed  Google Scholar 

  34. Atwood ME. Effects of sleep deficiency on risk, course, and treatment of psychopathology. Clin Chest Med. 2022;43:305–18.

    Article  PubMed  Google Scholar 

  35. Sleep disorders and sleep deprivation: an unmet public health problem. In: Colten HR, Altevogt BM, editors. Washington: National Academies Press; 2006.

  36. Hartley J, Bluebond-Langner M, Candy B, Downie J, Henderson EM. The physical health of caregivers of children with life-limiting conditions: a systematic review. Pediatrics. 2021;148:e2020014423.

  37. Shaw RJ, St John N, Lilo E, Jo B, Benitz W, Stevenson DK, et al. Prevention of traumatic stress in mothers of preterms: 6-month outcomes. Pediatrics. 2014;134:e481–8.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Dickinson C, Whittingham K, Sheffield J, Wotherspoon J, Boyd RN. Efficacy of interventions to improve psychological adjustment for parents of infants with or at risk of neurodevelopmental disability: a systematic review. Infant Ment Health J. 2020;41:697–722.

    Article  PubMed  Google Scholar 

  39. Kjaerandsen KS, Handegard BH, Brondbo PH, Halvorsen MB. Parental mental health screening in a neuropaediatric sample: psychometric properties of the everyday feeling questionnaire and variables associated with parental mental health. J Appl Res Intellect Disabil. 2021;34:648–58.

    Article  PubMed  Google Scholar 

  40. Pierce SK, Reynolds KA, Jakobson LS, Ricci MF, Roos LE. Unmet parental mental health service needs in neonatal follow-up programs: parent and service provider perspectives. Children. 2023;10:1174.

  41. Hynan MT, Mounts KO, Vanderbilt DL. Screening parents of high-risk infants for emotional distress: rationale and recommendations. J Perinatol. 2013;33:748–53.

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

We would like to express our gratitude to all the families that participated in our study. Your willingness to share your precious time was the most vital part of our project.

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Authors and Affiliations

Authors

Contributions

DHM, MEL, RGG, SR, and SA made substantial contributions to the conception or design of the work, or the acquisition, analysis, or interpretation of data. DHM drafted the work; MEL, RGG, SR, and SA revised it critically for important intellectual content. DHM, MEL, RGG, SR, and SA approved the final version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Corresponding author

Correspondence to Denise Helena Moreira.

Ethics declarations

Competing interests

RGG has received support from industry for research services (https://dcri.org/about-us/conflict-of-interest/).

Ethics approval and consent to participate

We obtained institutional review board approval from the Duke University Health System IRB with a waiver of informed consent for our study, protocol Pro00093442. The study was performed in accordance with the Declaration of Helsinki.

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Moreira, D.H., Lemmon, M.E., Greenberg, R.G. et al. Well-being in parents of infants with neurological conditions: from birth to 6 months after discharge. J Perinatol (2026). https://doi.org/10.1038/s41372-026-02631-y

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