Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care

Acharya, Krishna; Rholl, Erin; Malin, Kathryn J.; Malnory, Margaret E.; Leuthner, Jonathan; Leuthner, Steven R.; Lagatta, Joanne

doi:10.1016/j.jpeds.2022.02.008

Cited by 11 publications

(9 citation statements)

References 21 publications

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“…Studies that have explored parents' quality of life following their child's congenital diagnosis show that a postnatal diagnosis, a child requiring a medical device such as a gastrostomy tube, earlier gestational age, consultation from multiple specialists, multiple or longer hospital stays, and/or a nonsurgical anomaly are all associated with lower parental quality of life. 8,29 Under our first qualitative category, parenting mindset, we found that both mothers who received a prenatal and mothers who received a postnatal congenital diagnosis attempted to maintain a positive outlook through utilizing religious teachings, symbols, or practices, as well as family supports. These findings align with prior studies, which have found that religiosity and/or spirituality are key dimensions that provide guidance during parents' decision making, offer parents psychological support during the decision-making process, and/or provide a source of meaning, purpose, and connectedness during the decision-making experience.…”

Section: Discussionmentioning

confidence: 99%

“…It is also possible that mothers made these decisions with their own quality of life in mind. Studies that have explored parents' quality of life following their child's congenital diagnosis show that a postnatal diagnosis, a child requiring a medical device such as a gastrostomy tube, earlier gestational age, consultation from multiple specialists, multiple or longer hospital stays, and/or a nonsurgical anomaly are all associated with lower parental quality of life 8,29…”

Section: Discussionmentioning

confidence: 99%

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Being a “Good Parent” to a NICU Infant With a Major Congenital Anomaly

Uveges,

Hamilton,

Pados

et al. 2024

Advances in Neonatal Care

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Background: In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis. Purpose: (1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs. Methods: A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively. Results: Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked “focusing on my child's quality of life” higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups. Implications for Practice: NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences. Implications for Research: Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decision-making beliefs.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Being a “Good Parent” to a NICU Infant With a Major Congenital Anomaly

Uveges,

Hamilton,

Pados

et al. 2024

Advances in Neonatal Care

View full text Add to dashboard Cite

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“…9 Consequently, parents and other caregivers are often confounded by the complexity of care, and may fail to recall and comply with medical advice. 10,11 Acharya et al, demonstrated an inverse relationship between the number of follow-up visits in various clinics to the family's quality of life, as well as how the complexity of care inversely affects health-related quality of life (HRQL) of the infant and caregiver. 11 In Israel, preventive and well-care visits for children up to 6 years of age are provided in dedicated well care clinics (Family Care Centers, FCC), known in Hebrew as Tipat Halav (literally, a drop of milk) 12 and are separate from Health Maintenance Organizations (HMOs), which provide the remainder of general pediatric care.…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Neonatologist at the Well-Child Clinic: A High-Risk Infant Follow-up Pilot Study

Reingold,

Yotvat,

Schimmel

2024

Am J Perinatol

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Objective High-risk infant follow-up (HRIF) is a complex process lacking standardization. We present a simple, single-provider model that proves effective and is well received by caregivers. Study Design In this study we measured caregiver use and satisfaction with high-risk infant follow-up visit attended by an experienced neonatologist in a well-care setting, soon after discharge. Results One hundred parents participated in the survey. 78% of infants were seen in the first 3 months of life and 39% within one month of discharge. Nutrition (98%) and development (97%) were the most commonly discussed topics, followed by general health (95%), iron supplementation (93%), and head size (90%). Using a Likert scale of 1-5, with 5 being the highest rating, parents responded that the meeting answered their questions (4.7, n=93), made order of the infant’s needs (4.6, n=90) and increased their confidence in caring for their infants (4.65, n=92). Conclusion HRIF with an experienced neonatologist is an effective means of increasing parents’ understanding of their infants’ medical needs and confidence in caring for their infants.

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“…McAndrew et al noted less improvement in HRQL after discharge for parents of term NICU infants than premature NICU infants [9,22]. Krick et al's study of NICU parents described 3 phases of uncertainty as parents adapt to uncertainty, 1.…”

Section: Parents Experience Heterogeneous Levels Of Uncertaintymentioning

confidence: 99%

“…When the team was able to focus on what was known, rather than broad uncertainties, adaptation improved for all families. Reducible uncertainties are crucial to target especially for parents of medically complex infants requiring multiple subspecialists as they are at risk for higher levels of uncertainty [22,27] Providers should target parent uncertainty early as higher levels of uncertainty during and after NICU admission have been associated with an increased risk for perinatal post-traumatic stress disorder [28].…”

Section: Parents Experience Heterogeneous Levels Of Uncertaintymentioning

confidence: 99%

Adapting to Uncertainty: A Mixed Methods Study of Parents Whose Infants are in the NICU for Reasons Other than Prematurity

Rholl

Leuthner

Malin³

et al. 2022

Preprint

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Objectives: Parents of premature infants experience stress related to uncertainty. Less is known about the NICU experience of other parents. Our objectives were (1) describe the experience of parents whose infants are admitted to the NICU for reasons other than prematurity and (2) examine the impact of uncertainty and social factors. Study Design: Mixed-methods study utilizing interviews, surveys, and chart review to assess parent experience in relation to uncertainty and social factors. Results: 49 parents were enrolled. Themes included. 1. NICU Parents experienced uncertainty. Adaptation improved well-being. 2. Parents adapted by understanding their infant’s condition. While provider counseling helped parents adapt, uncertainty focused counseling increased distress. 3. Structural vulnerability impacted uncertainty. 4. Discrimination prevented adaptation. Conclusion: The NICU produces uncertainty for parents. Communicating a team lead, expertise, and interventional plans promoted adaptation. Parents with structural vulnerability use prior skills to manage uncertainty. Parents experiencing discrimination report alienation prevented adaptation.

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Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care

Cited by 11 publications

References 21 publications

Being a “Good Parent” to a NICU Infant With a Major Congenital Anomaly

Being a “Good Parent” to a NICU Infant With a Major Congenital Anomaly

Neonatologist at the Well-Child Clinic: A High-Risk Infant Follow-up Pilot Study

Adapting to Uncertainty: A Mixed Methods Study of Parents Whose Infants are in the NICU for Reasons Other than Prematurity

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