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Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant

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Abstract

Objectives

Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2).

Methods

Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012–2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2.

Results

On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child’s medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss.

Conclusions for Practice

The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

Significance

What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.

What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent–child outcomes.

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Data Availability

Data and material are available.

Code Availability

Data management and analytic code is available.

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Acknowledgements

We extend our sincere gratitude to the parents who took the time and effort to share their personal experiences with us. Thank you to Dr. Anne Grinyer, Dr. Kaci Osenga, Dr. Jill Dreyfus, Dr. Karen Hamre, Lexie Goertzen, and Ashley Zaudke for contributing to the success of this study.

Funding

Children’s Minnesota’s Internal Research Grants Program, Minneapolis, Minnesota, USA.

Author information

Authors and Affiliations

  1. Division of Pediatric Pain, Palliative and Integrative Medicine, University of California San Francisco (UCSF) School of Medicine, San Francisco, CA, USA

    Andrea C. Postier & Stefan J. Friedrichsdorf

  2. UCSF Stad Center for Pediatric Pain, Palliative and Integrative Medicine, Benioff Children’s Hospitals, Oakland, San Francisco, CA, USA

    Andrea C. Postier & Stefan J. Friedrichsdorf

  3. Brigham and Women’s Hospital, Pediatric Newborn Medicine, Boston, MA, USA

    Laurie P. Foster

  4. School of Social Work, University of Minnesota, Minneapolis, MN, USA

    Stacy Remke

  5. Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK

    Jane Simpson

  6. International Observatory On End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster, UK

    Sarah G. Brearley

  7. Division of Pediatric Pain, Palliative and Integrative Medicine, UCSF Department of Pediatrics, 550 16Th St., Floor 5, Box 3214, San Francisco, CA, 94143, USA

    Andrea C. Postier

Authors
  1. Andrea C. Postier
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  2. Laurie P. Foster
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  3. Stacy Remke
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  4. Jane Simpson
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Contributions

AP conceptualized the study, oversaw its implementation, conducted analyses, and drafted the paper. SB and JS oversaw the study and analyses and contributed to drafts. LF conducted study assessments and contributed to drafts. SR was involved in study conceptualization and contributed to drafts. SF reviewed and contributed to the final draft. All authors approved the final draft.

Corresponding author

Correspondence to Andrea C. Postier.

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The authors declare that there are no conflicts of interest.

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Children’s Minnesota’s Institutional Review Board (#1203-026) and Lancaster University’s Faculty of Health and Medicine’s Research Ethics Committee/University Research Ethics Committee (#1100031).

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Written consent was provided by all participants.

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Postier, A.C., Foster, L.P., Remke, S. et al. Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant. Matern Child Health J 28, 303–314 (2024). https://doi.org/10.1007/s10995-023-03827-w

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  • DOI: https://doi.org/10.1007/s10995-023-03827-w

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