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  1. Article ; Online: Response to comment on "Optimism bias in understanding neonatal prognoses".

    Haward, Marlyse F

    Journal of perinatology : official journal of the California Perinatal Association

    2021  Volume 41, Issue 9, Page(s) 2376

    MeSH term(s) Bias ; Humans ; Infant, Newborn ; Optimism ; Prognosis
    Language English
    Publishing date 2021-06-08
    Publishing country United States
    Document type Letter ; Comment
    ZDB-ID 645021-0
    ISSN 1476-5543 ; 0743-8346
    ISSN (online) 1476-5543
    ISSN 0743-8346
    DOI 10.1038/s41372-021-01124-4
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    In stock of ZB MED Cologne/Königswinter

    Zs.A 2412: Show issues Location:
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  2. Article ; Online: Ethical considerations in the management of infants with severe intraventricular hemorrhage.

    Haward, Marlyse F / Campbell, Deborah E

    Seminars in perinatology

    2022  Volume 46, Issue 5, Page(s) 151599

    Abstract: Intrinsic and extrinsic factors unique to neonatal care can complicate predictions of neurological outcomes for infants who suffer from severe intraventricular hemorrhage. While care decisions are driven by the same bioethical principles used in other ... ...

    Abstract Intrinsic and extrinsic factors unique to neonatal care can complicate predictions of neurological outcomes for infants who suffer from severe intraventricular hemorrhage. While care decisions are driven by the same bioethical principles used in other domains, neurological prognostication can challenge concepts of futility, require careful examination of parental values, uncover biases and/or potentially compromise the best interests of the future child. In the following chapter we will review bioethical principles and relevant concepts, explore challenges to decision-making surrounding diagnoses of severe intraventricular hemorrhage and conclude with a brief review of practical approaches for counseling parents about neurodevelopmental impairment given the constraints of prognostic uncertainty and assumptions related to quality of life. We will argue that neurological findings alone, even in the setting of severe intraventricular hemorrhage, often do not constitute enough evidence for redirection of care but can be permissible when the entire neonatal condition is considered.
    MeSH term(s) Cerebral Hemorrhage/diagnosis ; Cerebral Hemorrhage/therapy ; Humans ; Infant ; Infant, Newborn ; Parents ; Quality of Life
    Language English
    Publishing date 2022-03-12
    Publishing country United States
    Document type Journal Article
    ZDB-ID 752403-1
    ISSN 1558-075X ; 0146-0005
    ISSN (online) 1558-075X
    ISSN 0146-0005
    DOI 10.1016/j.semperi.2022.151599
    Database MEDical Literature Analysis and Retrieval System OnLINE

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    Zs.A 1339: Show issues Location:
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  3. Article ; Online: Research Ethics in Pregnancy: The Maternal-Fetal Dyad.

    Haward, Marlyse F / Lucena, Michelle H / Fuloria, Mamta

    NeoReviews

    2023  Volume 24, Issue 10, Page(s) e607–e615

    Abstract: Pregnant persons and their physicians often make decisions for health care without clinical evidence to guide their choices. Years of exclusionary practices in research, dominated by fears of fetal harm, have resulted in limited evidence on therapies for ...

    Abstract Pregnant persons and their physicians often make decisions for health care without clinical evidence to guide their choices. Years of exclusionary practices in research, dominated by fears of fetal harm, have resulted in limited evidence on therapies for pregnancy-specific conditions. It has also eroded pregnant persons' rights as autonomous individuals capable of weighing risks and benefits to make choices for themselves and their infants based on sound evidence. A paradigm shift from "routine exclusion" to "fair inclusion" of pregnant persons in clinical trials is needed to ensure that ethical principles are upheld when undertaking research in this population. This article will provide a brief review of the historical aspects of clinical research ethics for pregnant persons, focus on some key concepts within the context of the maternal-fetal dyad, and include a recent example from the coronavirus disease 2019 (COVID-19) pandemic to understand how society has interpreted tensions among the ethical principles of justice, beneficence, nonmaleficence, and autonomy. Note: This review uses the term "pregnant person(s)" to include women and people who are pregnant and do not identify themselves as women.
    Language English
    Publishing date 2023-09-30
    Publishing country United States
    Document type Journal Article
    ISSN 1526-9906
    ISSN (online) 1526-9906
    DOI 10.1542/neo.24-10-e607
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  4. Article ; Online: Providing Neonatal Outcome Estimates as an Intervention.

    Rysavy, Matthew A / Haward, Marlyse F

    JAMA pediatrics

    2020  Volume 175, Issue 3, Page(s) 325

    MeSH term(s) Humans ; Infant Mortality ; Infant, Newborn
    Language English
    Publishing date 2020-12-12
    Publishing country United States
    Document type Letter ; Comment
    ZDB-ID 2701223-2
    ISSN 2168-6211 ; 2168-6203
    ISSN (online) 2168-6211
    ISSN 2168-6203
    DOI 10.1001/jamapediatrics.2020.5167
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  5. Article ; Online: Antenatal consultation and deliberation: adapting to parental preferences.

    Haward, Marlyse F / Lorenz, John M / Janvier, Annie / Fischhoff, Baruch

    Journal of perinatology : official journal of the California Perinatal Association

    2023  Volume 43, Issue 7, Page(s) 895–902

    Abstract: Objective: To analyze and compare perspectives on antenatal consultation and decision-making from participants with varying degrees of prematurity experience and clinician-experts.: Study design: Open-ended interviews structured around topics ... ...

    Abstract Objective: To analyze and compare perspectives on antenatal consultation and decision-making from participants with varying degrees of prematurity experience and clinician-experts.
    Study design: Open-ended interviews structured around topics previously identified by recognized clinician-experts were conducted with participants having different levels of prematurity experience. Analysis used mixed methods (thematic and mental models analysis). Secondary sub-group comparisons were performed, based on degree of experience.
    Results: Non-clinician participants' (n = 80) perspectives differed regarding: amount and content of information desired, decision-making strategies, and who - parent or clinician - should direct consultations. Most wanted to retain decisional authority, all recognized their emotional limitations and many advocated for deliberation support. Participants worried parents' would regret choosing palliative care contrary to clinicians. Bereaved parents often saw issues differently.
    Conclusions: Parents approach risk and decision-making for extremely premature infants in a personal fashion. They need personalized support tailored to their unique circumstances, decision-making preferences, and emotions.
    MeSH term(s) Infant, Newborn ; Infant ; Humans ; Female ; Pregnancy ; Decision Making ; Parents/psychology ; Infant, Extremely Premature ; Emotions ; Referral and Consultation
    Language English
    Publishing date 2023-02-01
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 645021-0
    ISSN 1476-5543 ; 0743-8346
    ISSN (online) 1476-5543
    ISSN 0743-8346
    DOI 10.1038/s41372-023-01605-8
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    Zs.A 2412: Show issues Location:
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  6. Article ; Online: Using the COVID-19 as an excuse for unjustified devaluation of preterm infants.

    Haward, Marlyse F / Janvier, Annie / Lorenz, John M

    Acta paediatrica (Oslo, Norway : 1992)

    2021  Volume 110, Issue 4, Page(s) 1097–1099

    MeSH term(s) COVID-19 ; Humans ; Infant ; Infant, Newborn ; Infant, Premature ; SARS-CoV-2
    Language English
    Publishing date 2021-01-10
    Publishing country Norway
    Document type Editorial ; Comment
    ZDB-ID 203487-6
    ISSN 1651-2227 ; 0365-1436 ; 0803-5253
    ISSN (online) 1651-2227
    ISSN 0365-1436 ; 0803-5253
    DOI 10.1111/apa.15744
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  7. Article ; Online: Empirical Over Theoretical Ethics: Choosing What Matters to Patients and Families.

    Haward, Marlyse F / Janvier, Annie

    The American journal of bioethics : AJOB

    2019  Volume 19, Issue 3, Page(s) 54–56

    MeSH term(s) Empirical Research ; Humans ; Morals
    Language English
    Publishing date 2019-09-23
    Publishing country United States
    Document type Journal Article ; Comment
    ZDB-ID 2060433-6
    ISSN 1536-0075 ; 1526-5161
    ISSN (online) 1536-0075
    ISSN 1526-5161
    DOI 10.1080/15265161.2019.1572813
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    Zs.A 6814: Show issues Location:
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  8. Article ; Online: Personalized support of parents of extremely preterm infants before, during and after birth.

    Haward, Marlyse F / Luu, Thuy Mai / Pearce, Rebecca / Janvier, Annie

    Seminars in fetal & neonatal medicine

    2022  Volume 27, Issue 3, Page(s) 101335

    Abstract: The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support ... ...

    Abstract The emotional turmoil associated with extremely preterm birth is inescapable parents. How each parent handles the unexpected, makes sense of the unknown and learns to parent their child is uniquely personal. A rigid standardized approach to support families through their journey before and during neonatal intensive care disregards this individuality. This article reviews general concepts and practices that can be learned and applied by clinicians to promote resiliency and help parents cope adaptively. This review will describe how to personalize parenting support during the antenatal consultation and hospitalization for parents of extremely premature infants. To facilitate this, mindsets and care delivery models need to shift from inflexible standardized protocols to flexible guidelines that enable personalized communications, support structures and care delivery models tailored to each person's characteristics, preferences, and values.
    MeSH term(s) Female ; Humans ; Infant ; Infant, Extremely Premature ; Infant, Newborn ; Intensive Care Units, Neonatal ; Intensive Care, Neonatal ; Parenting/psychology ; Parents/psychology ; Pregnancy ; Premature Birth
    Language English
    Publishing date 2022-04-23
    Publishing country Netherlands
    Document type Journal Article ; Review
    ZDB-ID 2174416-6
    ISSN 1878-0946 ; 1744-165X
    ISSN (online) 1878-0946
    ISSN 1744-165X
    DOI 10.1016/j.siny.2022.101335
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    Zs.A 4798: Show issues Location:
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  9. Article ; Online: Helping Parents Cope in the NICU.

    Haward, Marlyse F / Lantos, John / Janvier, Annie

    Pediatrics

    2020  Volume 145, Issue 6

    Abstract: Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological ... ...

    Abstract Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological impact of this journey can have important effects on their psychological health. For parents of sick older children, "good parent" beliefs have been shown to foster positive growth. This concept is also essential for parents of infants in the NICU, although their path is complex.We write as clinicians who were also families in the NICU. We suggest parents need to hear and internalize 3 important messages that overlap but are each important: you are a parent, you are not a bad parent, and you are a good parent. We offer practical suggestions to NICU clinicians that we believe will help NICU parents cope while their infant is in the NICU and afterward.
    MeSH term(s) Adaptation, Psychological/physiology ; Female ; Humans ; Infant, Newborn ; Intensive Care Units, Neonatal ; Intensive Care, Neonatal/methods ; Intensive Care, Neonatal/psychology ; Male ; Parents/psychology ; Stress, Psychological/prevention & control ; Stress, Psychological/psychology
    Language English
    Publishing date 2020-05-29
    Publishing country United States
    Document type Journal Article
    ZDB-ID 207677-9
    ISSN 1098-4275 ; 0031-4005
    ISSN (online) 1098-4275
    ISSN 0031-4005
    DOI 10.1542/peds.2019-3567
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  10. Article ; Online: Bereaved Parents: Insights for the Antenatal Consultation.

    Haward, Marlyse F / Lorenz, John M / Janvier, Annie / Fischhoff, Baruch

    American journal of perinatology

    2021  Volume 40, Issue 8, Page(s) 874–882

    Abstract: Objective: The study aimed to explore experiences of extremely preterm infant loss in the delivery room and perspectives about antenatal consultation.: Study design: Bereaved participants were interviewed, following a semi-structured protocol. ... ...

    Abstract Objective: The study aimed to explore experiences of extremely preterm infant loss in the delivery room and perspectives about antenatal consultation.
    Study design: Bereaved participants were interviewed, following a semi-structured protocol. Personal narratives were analyzed with a mixed-methods approach.
    Results: In total, 13 participants, reflecting on 17 pregnancies, shared positive, healing and negative, harmful interactions with clinicians and institutions: feeling cared for or abandoned, doubted or believed, being treated rigidly or flexibly, and feeling that infant's life was valued or not. Participants stressed their need for personalized information, individualized approaches, and affective support. Their decision processes varied; some wanted different things for themselves than what they recommended for others. These interactions shaped their immediate experiences, long-term well-being, healing, and regrets. All had successful subsequent pregnancies; few returned to institutions where they felt poorly treated.
    Conclusion: Antenatal consultations can be strengthened by personalizing them, within a strong caregiver relationship and supportive institutional practices.
    Key points: · Personalized antenatal consultations should strive to balance cognitive and affective needs.. · Including perspectives from bereaved parents can strengthen antenatal consultations.. · Trusting provider-parent partnerships are pivotal for risk communication..
    MeSH term(s) Infant ; Humans ; Infant, Newborn ; Female ; Pregnancy ; Qualitative Research ; Parents/psychology ; Infant, Extremely Premature ; Emotions ; Referral and Consultation
    Language English
    Publishing date 2021-07-12
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 605671-4
    ISSN 1098-8785 ; 0735-1631
    ISSN (online) 1098-8785
    ISSN 0735-1631
    DOI 10.1055/s-0041-1731651
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