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Barsman Dissertation.pdf (2.88 MB)

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Decision-Making for High-Risk Infants in the Neonatal Intensive Care Unit (NICU): Mothers' Attitudes and Experiences

Barsman, Sarah Gutin
http://orcid.org/0000-0002-4592-3736
http://rave.ohiolink.edu/etdc/view?acc_num=case1564484781963305

Abstract Details

2019, Doctor of Philosophy, Case Western Reserve University, Nursing.
Parents of infants hospitalized in the neonatal intensive care unit (NICU) are tasked with difficult decisions and sometimes need to decide between initiation or continuation of medical intervention versus withholding or withdrawal. Research has shown that parents cite the importance of maintaining hope; receiving honest information; engaging in dynamic communication; and feeling supported as crucial to the process of decision-making. However, little is known regarding outcomes of decision-making, and more specifically, whether parents are satisfied with the outcomes of decision-making and how this satisfaction or dissatisfaction may relate to the development of post-traumatic stress disorder (PTSD). The purpose of this mixed-methods study was to explore mothers’ perspectives regarding the outcomes of decision-making for their surviving infants formerly hospitalized in the NICU, with specific attention to the types of decisions that mothers perceived to be most important, decisional satisfaction, and the development of PTSD, and to further evaluate factors that were related to decisional satisfaction and PTSD through a cross-sectional descriptive questionnaire and semi-structured interview. Forty-four mothers participated. The small sample size dictates that results should be interpreted with caution. Thirty-four percent of mothers desired shared decision-making while 23% perceived that it had actually occurred. Eighty-two percent of mothers were satisfied with the outcome of their decision-making. Higher certainty regarding the decision (p = 0.023) and better neurodevelopmental score (p = 0.029) were significantly related to decisional satisfaction, while lower gestational age at birth (p = 0.068) approached significance. Twenty-seven percent of mothers met clinical cut-off as having diagnosable PTSD and a further 25% had elevated scores just below threshold. Satisfaction with preparation for NICU admission approached significance (p = 0.084) in relationship to development of PTSD. The relationship between decisional satisfaction and PTSD was non-significant (r = 0.174, p = 0.295). While no mothers completed semi-structured interviews, open-ended questionnaire questions yielded rich responses. Mothers identified a wide range of decisions as being most important, with many citing feeding choices. Mothers expressed frustration at not achieving their desired role in decision-making, both when they wanted less or more autonomy than given. Mothers also cited the importance of communication in many formats, but some felt that the typical `care conference’ model was too overwhelming. Mention of “trauma,” “stress,” and “PTSD” permeated responses and many wished that more professional emotional support had been available.
Donna Dowling (Committee Chair)
Christopher Burant (Committee Member)
Amelia Bieda (Committee Member)
Barbara Daly (Committee Member)
Cheryl Killion (Committee Member)
Stuart Youngner (Committee Member)
229 p.
Health Care; Medical Ethics; Medicine; Mental Health; Nursing
NICU; surviving infants; maternal decision-making; decisional outcomes; developmental outcomes; post-traumatic stress; PTSD

Recommended Citations

Citations

  • Barsman, S. G. (2019). Decision-Making for High-Risk Infants in the Neonatal Intensive Care Unit (NICU): Mothers' Attitudes and Experiences [Doctoral dissertation, Case Western Reserve University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=case1564484781963305

    APA Style (7th edition)

  • Barsman, Sarah. Decision-Making for High-Risk Infants in the Neonatal Intensive Care Unit (NICU): Mothers' Attitudes and Experiences. 2019. Case Western Reserve University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=case1564484781963305.

    MLA Style (8th edition)

  • Barsman, Sarah. "Decision-Making for High-Risk Infants in the Neonatal Intensive Care Unit (NICU): Mothers' Attitudes and Experiences." Doctoral dissertation, Case Western Reserve University, 2019. http://rave.ohiolink.edu/etdc/view?acc_num=case1564484781963305

    Chicago Manual of Style (17th edition)

case1564484781963305
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© 2019, all rights reserved.
This open access ETD is published by Case Western Reserve University School of Graduate Studies and OhioLINK.