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Aim: To synthesize the literature on breastfeeding outcomes associated with exposure to internationally recognized best practices, such as the Baby-Friendly Hospital Initiative, for patients in the United States during the postpartum period, contextualized within the Missed Care Model., Design: The authors employed Whittemore and Knafl's integrative review framework and the 2020 PRISMA guidelines for data extraction, synthesis, reporting and assessment., Methods: Five electronic databases were searched for articles published between 2007 and 2023. Eligible articles reported on exposure to breastfeeding best practices and outcomes or the experiences, views, perceptions and attitudes of parents, nurses or lactation consultants regarding hospital breastfeeding support. Extracted data were compared to identify in-hospital exposure to breastfeeding best practices and breastfeeding outcomes, and differences in exposure and outcomes based on patient and provider characteristics., Results: Twenty-one quantitative, qualitative and mixed methods articles met inclusion criteria. A higher reported adherence to best practices was associated with greater odds of breastfeeding; some practices demonstrated greater effects overall or for specific groups. Higher exposures to best practices and higher breastfeeding rates were found for non-Hispanic white patients, and those with more education, private insurance and who live in urban areas. Disparities in support and outcomes were related to patients' race/ethnicity, language, weight and age. Qualitative findings reflected missed care concepts, such as internal processes related to habits and group norms, relevant to breastfeeding support., Conclusion: Review findings also include an adapted Missed Care Model specific to breastfeeding support, which can inform future research related to providers' internal processes that may influence breastfeeding or equitable breastfeeding care., Implications for the Profession And/or Patient Care: Missed care can be influenced by a variety of factors, including providers' internal values and beliefs. Study findings suggest the existence of inequities in breastfeeding care and underscore the need to address and eliminate breastfeeding disparities., Impact: This study addressed how patient exposure to best practices in breastfeeding support relates to breastfeeding outcomes and whether exposure and outcomes differ by patient or provider characteristics, connecting this to the Missed Care in Breastfeeding Support Model. The main findings were that higher reported exposure to best practices in breastfeeding support related to improved breastfeeding outcomes; inequities exist in exposure to best practices; and patients and providers identify the importance of providers' internal processes in the delivery of breastfeeding support, which aligns with the Missed Care in Breastfeeding Support Model. Study findings will have the potential to impact how nurses, lactation consultants and other providers who deliver breastfeeding support in the postpartum hospital setting., Reporting Method: The authors adhered to relevant 2020 PRISMA reporting guidelines., Patient or Public Contribution: No patient or public contribution., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Human milk improves neurodevelopment for preterm infants, but relationships between human milk and neurodevelopment for infants with critical CHD are unknown. We aimed to (1) explore associations between human milk/direct breastfeeding and neurodevelopment at 1-year and 2-year follow-up and (2) describe patterns of human milk (maternal, donor) and commercial formula during hospitalisation in the first year of life.This retrospective cohort study included infants who underwent surgery for CHD < 6 months old. The primary outcome was neurodevelopment via Bayley Scales of Infant Development-IV. Analysis included adjusted linear regression for associations between exclusive human milk while inpatient during the first 6 months or any direct breastfeeding while inpatient during the first year of life and 1-year Bayley-IV scores. Models were adjusted for race, insurance type, genetic diagnosis, and length of stay.Of 98 eligible infants, 40% followed up at 1 year; 27% at 2 years. There were differences in follow-up related to demographics (race, ethnicity) and social determinants of health (insurance type, distance from clinic). In adjusted models, infants who directly breastfed had 13.18 points higher cognition (95% CI: 0.84-25.53, p = 0.037); 14.04 points higher language (2.55-25.53, p = 0.018); and 15.80 points higher motor scores (3.27-28.34, p = 0.015) at 1-year follow-up. Infants fed exclusive human milk had 12.64 points higher cognition scores (-0.53-25.82, p = 0.059).Future investigation into nutrition and neurodevelopment in the context of critical CHD is warranted. As neurodevelopmental follow-up becomes standard of care in this population, efforts are needed to mitigate disparities in access to this care.

Background: Following prenatal diagnosis of critical congenital heart disease (CCHD), parents encounter emotional distress while facing caregiving challenges. Supportive psycho-educational interventions using mobile health (mHealth) can make care more accessible., Objectives: We tested a novel nurse-guided mHealth care program, Preparing Heart and Mind ™ (PHM ™ ), with the objectives of examining feasibility and estimating the effect of the intervention on parents' emotional distress., Methods: This pilot study design randomized participants using a 2:1 intervention to control ratio. Analysis involved description of retention, and intervention attendance and engagement, and adjusted linear mixed models to estimate group differences in depressive (CES-D), anxiety (STAI-S), and traumatic stress (IES-r) symptoms., Results: The sample included 55 parents (n=38 PHM ™ group, n=17 control). Complete retention of 37 (67%) parents included 29 (76%) in the PHM ™ group and 8 (47%) control. Most attrition was due to infant death (7 parents), transplant referral (2 parents), or postnatal diagnostic ineligibility (4 parents). For the PHM ™ group, ≥96% of parents attended pre- and postnatal sessions and most (65%) messaged with the nurse. mHealth engagement was highest prenatally, with handling uncertainty the most viewed topic (average 94% pages viewed). In linear mixed models analyses, the PHM ™ group had on average 4.84 points lower depression (95% CI: -10.68-1.04), 6.56 points lower anxiety (-14.04-0.92), and 6.28 points lower trauma (-14.44-1.88) scores by study end., Conclusion: Findings suggest that a nurse-guided mHealth approach is feasible and may contribute to a clinically important reduction in parents' emotional distress.

Introduction: Lactating parents of infants hospitalised for critical congenital heart disease (CHD) face significant barriers to direct breastfeeding. While experiences of directly breastfeeding other hospitalised neonates have been described, studies including infants with critical CHD are scarce. There is no evidence-based standard of direct breastfeeding care for these infants, and substantial practice variation exists., Aim: To explain how direct breastfeeding is established with an infant hospitalised for critical CHD, from lactating parents' perspectives., Materials & Methods: This study is a qualitative grounded dimensional analysis of interviews with 30 lactating parents of infants with critical CHD who directly breastfed within 3 years. Infants received care from 26 United States cardiac centres; 57% had single ventricle physiology. Analysis included open, axial, and selective coding; memoing; member checking; and explanatory matrices., Results: Findings were represented by a conceptual model, "Wayfinding through the 'ocean of the great unknown'." The core process of Wayfinding involved a nonlinear trajectory requiring immense persistence in navigating obstacles, occurring in a context of life-and-death consequences for the infant. Wayfinding was characterised by three subprocesses: navigating the relationship with the healthcare team; protecting the direct breastfeeding relationship; and doing the long, hard work. Primary influencing conditions included relentless concern about weight gain, the infant's clinical course, and the parent's previous direct breastfeeding experience., Conclusions: For parents, engaging in the Wayfinding process to establish direct breastfeeding was feasible and meaningful - though challenging. The conceptual model of Wayfinding explains how direct breastfeeding can be established and provides a framework for research and practice.

Objective: To identify factors that support or limit human milk (HM) feeding and direct breastfeeding (BF) for infants with single ventricle congenital heart disease at neonatal stage 1 palliation (S1P) discharge and at stage 2 palliation (S2P) (∼4-6 months old)., Study Design: Analysis of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) registry (2016-2021; 67 sites). Primary outcomes were any HM, exclusive HM, and any direct BF at S1P discharge and at S2P. The main analysis involved multiple phases of elastic net logistic regression on imputed data to identify important predictors., Results: For 1944 infants, the strongest predictor domain areas included preoperative feeding, demographics/social determinants of health, feeding route, clinical course, and site. Significant findings included: preoperative BF was associated with any HM at S1P discharge (OR = 2.02, 95% CI = 1.74-3.44) and any BF at S2P (OR = 2.29, 95% CI = 1.38-3.80); private/self-insurance was associated with any HM at S1P discharge (OR = 1.91, 95% CI = 1.58-2.47); and Black/African-American infants had lower odds of any HM at S1P discharge (OR = 0.54, 95% CI = 0.38-0.65) and at S2P (0.57, 0.30-0.86). Adjusted odds of HM/BF practices varied among NPC-QIC sites., Conclusions: Preoperative feeding practices predict later HM and BF for infants with single ventricle congenital heart disease; therefore, family-centered interventions focused on HM/BF during the S1P preoperative time are needed. These interventions should include evidence-based strategies to address implicit bias and seek to minimize disparities related to social determinants of health. Future research is needed to identify supportive practices common to high-performing NPC-QIC sites., Competing Interests: Declaration of Competing Interest This study was supported by the National Institutes of Health (NINR, Award #F31NR020577). Content is the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. D.L.S is a member of the Advisory Board for Medela Healthcare US. The other authors have no conflicts of interest to disclose., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Objective: To provide an overview of the development of the Preparing Heart and Mind™ (PHM™) care program designed for parents with a prenatal diagnosis of critical congenital heart disease (CCHD) and describe issues of parental concern, caregiving competencies, and type and timing of PHM™ topics., Methods: Guided participation theory underpinned intervention development and a mixed methods pilot of a novel, nurse-guided mHealth intervention. Parents were enrolled from the third trimester of pregnancy-12 weeks postnatally. Online surveys, session transcripts, and app use were descriptively analyzed., Results: The sample included 19 mothers/birthing persons and 15 caregiving partners randomized to the intervention group. In 49 sessions, mental health/wellbeing (94%) and condition-specific information (86%) were top issues. Many caregiving competencies were developed, with mothers/birthing persons often focused on feeding (86%). Regulating emotions and co-parenting consistently needed support. PHM™ topics of preparing for hospitalization (47%) and handling uncertainty (45%) were most discussed. Two cases further characterize findings., Conclusion: Nurse-parent collaborative understanding of issues emphasized the need for mental health assessments. Prenatal intervention opportunities were underscored through discussions of caregiving issues and PHM™ topics., Innovation: PHM™ represents an innovative approach that holds promise for supporting parents' mental health and caregiving needs outside the healthcare setting., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Background Infants with single ventricle congenital heart disease undergo 3 staged surgeries/interventions, with risk for morbidity and mortality. We estimated the effect of human milk (HM) and direct breastfeeding on outcomes including necrotizing enterocolitis, infection-related complications, length of stay, and mortality. Methods and Results We analyzed the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) registry (2016-2021), examining HM/breastfeeding groups during stage 1 and stage 2 palliations. We calculated propensity scores for feeding exposures, then fitted Poisson and logistic regression models to compare outcomes between propensity-matched cohorts. Participants included 2491 infants (68 sites). Estimates for all outcomes were better in HM/breastfeeding groups. Infants fed exclusive HM before stage 1 palliation (S1P) had lower odds of preoperative necrotizing enterocolitis (odds ratio [OR], 0.37 [95% CI, 0.17-0.84]; P =0.017) and shorter S1P length of stay (rate ratio [RR], 0.87 [95% CI, 0.78-0.98]; P =0.027). During the S1P hospitalization, infants with high HM had lower odds of postoperative necrotizing enterocolitis (OR, 0.28 [95% CI, 0.15-0.50]; P <0.001) and sepsis (OR, 0.29 [95% CI, 0.13-0.65]; P =0.003), and shorter S1P length of stay (RR, 0.75 [95% CI, 0.66-0.86]; P <0.001). At stage 2 palliation, infants with any HM (RR, 0.82 [95% CI, 0.69-0.97]; P =0.018) and any breastfeeding (RR, 0.71 [95% CI, 0.57-0.89]; P =0.003) experienced shorter length of stay. Conclusions Infants with single ventricle congenital heart disease in high-HM and breastfeeding groups experienced multiple significantly better outcomes. Given our findings of improved health, strategies to increase the rates of HM/breastfeeding in these patients should be implemented. Future research should replicate these findings with granular feeding data and in broader congenital heart disease populations, and should examine mechanisms (eg, HM components, microbiome) by which HM/breastfeeding benefits these infants.

Approximately 30-50% of infants undergoing neonatal surgery for congenital heart disease (CHD) cannot meet oral feeding goals by discharge and require feeding tube support at home. Feeding tubes are associated with increased readmission rates and consequent hospital, payer, and family costs, and are a burden for family caregivers. Identification of modifiable risk factors for oral feeding problems could support targeted care for at-risk infants. Therefore, the aim of this systematic review is to determine risk factors for tube feeding at discharge in infants undergoing neonatal surgery for CHD. Following Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines, a search was conducted using MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews. Studies published before 2010 were excluded. The search resulted in 607 records, of which 18 were included. Studies were primarily retrospective cohort designs and results were often inconsistent. Study quality was assessed using the Joanna Briggs Critical Appraisal Tools. As a group, the studies exhibited substantial risk for bias. Based on the findings, infants who struggle with feeding preoperatively, experience increased nil per os duration and/or low oral feeding volume postoperatively, experience increased duration of mechanical ventilation, or have vocal cord dysfunction may be at risk for tube feeding at hospital discharge. Factors warranting further examination include cardiac physiology (e.g., aortic arch obstruction) and the relationship between neurodevelopment and oral feeding. Clinicians should use caution in assuming risk for an individual and prioritize early implementation of interventions that facilitate oral feeding development., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: The opportunity to establish a direct breastfeeding (DBF) relationship with a preterm infant, if desired by the mother or lactating parent, is a known driver of positive healthcare experiences. Preterm birth is an independent risk factor for early human milk (HM) cessation, and DBF at the first oral meal promotes continued DBF during hospitalization and HM duration beyond discharge. While the Spatz 10-step model for protecting and promoting HM and breastfeeding in vulnerable infants provides best practices, lack of standardized implementation results in missed opportunities to meet parents' DBF goals., Purpose: To standardize clinical practices to increase DBF at the first oral meal, total DBF meals during hospitalization, and use of test weighing to measure milk transfer for preterm infants., Methods: Quality improvement methods were used to develop and implement Encourage, Assess, Transition (EAT): a DBF protocol for infants less than 37 weeks gestation at birth, in a level II neonatal intensive care unit., Results: Thirty-eight (45%) infants from 27.7 to 36.7 weeks of gestation initiated the protocol. The proportion of infants' DBF at first oral meal increased from 22% to 54%; mean DBF meals during hospitalization increased from 13.3 to 20.3; and use of test weighing increased by 166%., Implications for Practice and Research: Standardizing DBF practices with the EAT protocol increased DBF during hospitalization-a known driver of patient experience-and HM duration beyond discharge, in hospitalized preterm infants. Researchers should validate the reported benefits of EAT (increased DBF during hospitalization, use of test weighing, and improved patient experience), methods to promote passive dissemination of evidence, and sustain change., Video Abstract Available at: https://journals.lww.com/advancesinneonatalcare/pages/video.aspx?v=61 ., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2022 by The National Association of Neonatal Nurses.)

Introduction: Infants with single-ventricle (SV) congenital heart disease (CHD) undergo staged surgical and/or catheter-based palliation and commonly experience feeding challenges and poor growth. Little is known about human milk (HM) feeding or direct breastfeeding (BF) in this population. Aim: To determine (1) HM and BF prevalence for infants with SV CHD, and (2) whether BF at neonatal stage 1 palliation (S1P) discharge is associated with any HM at stage 2 palliation (S2P; ∼4-6 months old). Materials and Methods: Analysis of the National Pediatric Cardiology Quality Improvement Collaborative registry (2016-2021) using (1) descriptive statistics for prevalence, and (2) logistic regression adjusted for multiple variables (e.g., prematurity, insurance, length of stay) to examine early BF/later HM feeding. Results: Participants included 2,491 infants from 68 sites. HM prevalence ranged from 49.3% any/41.5% exclusive before S1P to 37.1% any/7.0% exclusive at S2P. Direct BF ranged from 16.1% any/7.9% exclusive before S1P to 9.2% any/3.2% exclusive at S2P discharge. Prevalence varied among sites; for example, 0-100% any HM before S1P. Infants BF at S1P discharge had greater odds of any HM (odds ratio = 4.11, 95% confidence interval [CI] = 2.79-6.07, p  < 0.001) and exclusive HM (1.85, 95% CI 1.03-3.30, p  = 0.039) at S2P. Conclusions: The prevalence of HM and BF for infants with SV CHD was low and declined over time. Direct BF at S1P discharge was associated with increased odds of any HM at S2P. Wide variation suggests that site-specific practices impact feeding outcomes. HM and BF prevalence are suboptimal in this population, and identification of supportive institutional practices is needed.

Background: Infants with congenital heart disease (CHD) are at risk for feeding-related morbidity and mortality, with growth failure and oral feeding problems associated with poor outcomes. The benefits of human milk (HM) for preterm infants have been well documented, but evidence on HM for infants with CHD has recently begun to emerge. Objectives: Our primary aim was to examine the impact of HM feeding on outcomes for infants with CHD. Methods: Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) guidelines, a search was conducted using MEDLINE, CINAHL, and Cochrane Database of Systematic Reviews. The quality of each study was assessed using the Joanna Briggs Critical Appraisal Tools. A total of 16 studies were included. Results: There was evidence that an exclusive HM diet reduces the risk of necrotizing enterocolitis (NEC) for infants with CHD. Evidence with a higher risk for bias indicated that a well-managed HM diet may be associated with improved growth, shorter length of stay, and improved postoperative feeding and nutritional outcomes. Chylothorax outcomes were similar between modified HM and medium-chain triglyceride formula. The studies had significant limitations related to power, lack of control for covariates, and inconsistent delineation of feeding groups. Conclusions: Based on the reduced risk for NEC and given the conclusive benefits in other vulnerable populations, we recommend that clinicians and institutions prioritize programs to support HM feeding for infants with CHD. Large high-quality studies are needed to validate these results. Future work should clarify best practices in managing an HM diet to support optimal growth and development for these infants.

Background and Purpose: The prenatal preparing women do for infant caregiving is understudied. In this pilot, multimethods study, we examined motivation for preparing for infant caregiving of women in their third trimester of pregnancy expecting either a healthy infant or an infant with complex congenital heart disease (CCHD)., Methods: Eleven women expecting a healthy infant and four expecting an infant with CCHD completed a questionnaire and were interviewed. Preparing was reported in context of expectations, intentions, and goals and in personal, family, and infant conditions. Motivation for preparing was expressed through an interview about caregiving issues women were working on. Intensity of motivation was estimated by self-report of the time infant caregiving issues were in thought or action. Effect sizes were calculated for between group differences in motivation intensity. Interview data were examined with directed content analysis., Results: Intensity of motivation was higher for women expecting an infant with CCHD for issues of Knowing What and How to prepare. Women expecting an infant with CCHD reported uncertainty about how they would feed their babies given their health condition. Interviews yielded new motivations encompassing issues of family and working with the parent partner., Implications: Assessment of issues women are working on prenatally, indicating motivations for preparing for infant caregiving, and of the intensity of motivations advances culturally-attuned and family-centered preparation. Knowledge of these issues and motivation intensity could orient clinical care to supporting women in developing well-informed expectations, intentions, and goals culturally suited to postnatal learning and infant needs., (© Copyright 2022 Springer Publishing Company, LLC.)

Objective: To determine clinical consensus and non-consensus in regard to evidence-based statements about feeding infants with complex CHD, with a focus on human milk. Areas of non-consensus may indicate discrepancies between research findings and practice, with consequent variation in feeding management., Materials and Methods: A modified Delphi survey validated key feeding topics (round 1), and determined consensus on evidence-based statements (rounds 2 and 3). Patients (n=25) were an interdisciplinary group of clinical experts from across the United States of America. Descriptive analysis used SPSS Statistics (Version 26.0). Thematic analysis of qualitative data provided context for quantitative data., Results: Round 1 generated 5 key topics (human milk, developing oral feeding skills, clinical feeding practice, growth failure, and parental concern about feeding) and 206 evidence-based statements. The final results included 110 (53.4%) statements of consensus and 96 (46.6%) statements of non-consensus. The 10 statements of greatest consensus strongly supported human milk as the preferred nutrition for infants with complex CHD. Areas of non-consensus included the adequacy of human milk to support growth, need for fortification, safety, and feasibility of direct breastfeeding, issues related to tube feeding, and prevention and treatment of growth failure., Conclusions: The results demonstrate clinical consensus about the importance of human milk, but reveal a need for best practices in managing a human milk diet for infants with complex CHD. Areas of non-consensus may lead to clinical practice variation. A sensitive approach to these topics is needed to support family caregivers in navigating feeding concerns.

Objective: To generate a self-report instrument to capture clinically relevant variations in expectant parents' caregiving development, specified by how they are preparing to parent an infant with a major congenital anomaly., Methods: Recent literature structured domains to guide item generation. Evaluations by experts and expectant parents led to a refined instrument for field testing. Psychometric testing included exploratory factor analysis, internal consistency, and test-retest reliability., Results: Samples included expert evaluators (n = 9), and expectant parent evaluators (n = 20) and expectant mother field testers (n = 67) with fetal anomaly diagnoses. Preparing to Parent-Act, Relate, Engage (PreP-ARE) resulted from a three factor solution that explained 71.8 % of the total variance, with global Cronbach's α = 0.72, and sub-scales 0.81, 0.65, 0.72 respectively. Cohen's weighted kappa indicated all items were acceptably reliable, with 14 of 19 items showing moderate (≥ 0.41) or good (≥ 0.61) reliability. Convergent validity was found between the maternal antenatal attachment and Act scales (r = 0.39, p = 0.001)., Conclusion: This empirically-based instrument was demonstrated to be valid and reliable, and has potential for studying this transitional time., Practice Implications: PreP-ARE could be used to understand patient responses to the diagnosis, level of engagement, readiness to make decisions, and ability to form collaborative partnerships to manage healthcare., Competing Interests: Declaration of Competing Interest The authors report no declarations of interest., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Undergraduate students often perceive a disconnect between research and nursing practice. To support student understanding of this relationship, an innovative, authentic learning environment was created in a writing-intensive, capstone-level nursing course. Authentic learning environments couple real-life situations/simulations with personal, experiential learner engagement. Students completed pre- and postsurveys assessing their beliefs about and confidence in using research to inform practice. Quantitative and open-ended qualitative responses were analyzed with inferential statistics and conventional content analysis techniques, respectively. Findings suggested the learning environment increased student confidence and facilitated connections between research and practice, supporting continued use and further evaluation of this approach.

Purpose: The purpose of this study was to chronicle the adaptive challenges and adaptive work, including emerging leadership behaviors, recounted over time by the parents of very young children diagnosed before birth with life threatening conditions., Design and Methods: A descriptive, follow-up study design was used for the current study. Following the original grounded dimensional analysis study completed in 2012, the corpus for this analysis was collected in 2014. In-depth, audio-recorded interviews were conducted with 15 families (8 couples, 7 mothers). The 15 children, born with cardiac, abdominal, and cerebrospinal anomalies, were 14 - 37 months or deceased at follow-up. A directed content analysis of transcribed verbatim interviews was structured by the Adaptive Leadership framework., Results: Parents described behaviors that indicated a non-linear development towards adaptive leadership as they accomplished the adaptive work within intra- and interpersonal domains that was necessary to address challenges over time. Not all parents described abilities and/or a willingness to mobilize others to do adaptive work, suggesting that adaptive leadership remained an unrealized potential., Conclusions: Understood as a complex adaptive system, parents of medically at-risk children hold potential for development towards adaptive leadership and collaborative partnership within the family and with healthcare providers., Practice Implications: Due to improved survival rates, parents face ongoing challenges related to their children's unpredictable and often chronic health needs. Study findings illustrate parents' adaptive work and leadership behaviors, which can inform nursing assessments, as well as the type and timing for intervention., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Developmental delay in very young children is trending upward. Maternal depressive symptoms are known to negatively impact child development and may also impact family management of the child's condition. Research on family management guided this second phase of a sequential mixed methods study. The purpose of this study was to explore mothers' perceptions of family management of their children's developmental delays. Mothers of very young children who received early intervention services were interviewed. A team-based content analysis approach revealed key findings: (a) views of the child that were not holistic, (b) condition management ability was informed by what the mother thought her child needed, (c) views of condition impact were related to adapting to possible child outcomes and experiences of isolation, and (d) parental/caregiver mutuality was impaired by conflict. Understanding perceptions of family management and influence of depressive symptoms in this context is essential to extend assessment and intervention.

This study described co-parenting motivations and quality of co-parenting features for parents of infants with complex congenital heart disease (CCHD), including differences over time by illness severity. Existing transcripts of parenting experience at infant age 1 and 12 months for 23 parent couples were analyzed using directed content analysis. Data were quantitized for additional description. Six co-parenting motivations and five co-parenting features were identified. Two co-parenting motivations had not been previously described: Developing the Co-Parenting Relationship and Maintaining the Couple Relationship. Variability in quality of co-parenting features was evident. However, the majority of parents showed high ratings. Motivations and quality of co-parenting features changed over time and were related to illness severity. Our findings increase the understanding of what parents are working on as a couple to parent an infant with CCHD and the quality of this co-parenting. Several questions for further study are presented.

Aim: The aim of this study was to describe co-parenting communication in couples in the context of caregiving for children prenatally diagnosed and born with complex health conditions., Background: Foetal diagnosis of complex health conditions such as heart, central nervous system, or abdominal anomalies are confirmed more often than ever before. Following diagnosis, parents face challenges beginning before birth. The quality of co-parenting, when two individuals relate to each other as parents and share parental responsibilities, can have an impact on child health and development. Yet, little is known about co-parenting during the transition to parenthood after foetal diagnosis., Design: This secondary analysis of interview data was informed by Bowlby's theoretical work on a parent's view of self as caregiver and the literature on co-parenting., Methods: Data were drawn from a larger, mixed methods, longitudinal study and included audio-recorded interviews conducted with 16 parents participating as eight couples after foetal diagnosis during the third trimester of pregnancy in 2011-2012 and again when children were 14-37 months old in 2014. Analysis of interviews transcribed verbatim focused on co-parenting communication., Findings: Co-parenting communication regarding support, agreement and information sharing and a new category of shared meaning were related to the diagnosis before birth. Later, couples evolved in their co-parenting communication while caring for their toddlers and working towards achieving a sense of normalcy., Conclusion: Variation in co-parenting communication among couples preparing and caring for children with complex health conditions, including the development of a shared meaning of the child's diagnosis, needs further investigation to inform nursing assessment and guide tailored interventions., (© 2017 John Wiley & Sons Ltd.)

Advances in medical technology account for increasingly more couples receiving fetal diagnoses of complex congenital heart disease. Theory on internal working models of caregiving during parenting transitions informed this prospective, exploratory study. Data included conjoint interviews and measures of anxiety, trauma, and depression collected from six couples after diagnosis and after birth. Severity of illness was described using infant health records. Directed content analysis furthered understanding of the caregiving motivation to manage health care that included three categories of parental efforts: (a) to determine expectations of health care providers, (b) to reconcile illness- and non-illness-related care, and (c) to express agency as a parent. Synthesis of qualitative findings transformed into categorical ratings with parents' levels of distress resulted in two profiles characterizing types of internal working models. Findings extend theory on internal working models of caregiving and offer direction for future research regarding parental management of health care for their chronically ill offspring. Implications for practice with families are offered.

Using a cross-sectional, grounded dimensional analysis study design, we collected demographic and health information and conducted telephone interviews with 37 expectant parents of 26 fetuses within 25 families. We describe a theoretical model with a core process of preparing heart and mind for becoming a parent following a diagnosis of fetal anomaly. The process of preparing was influenced by fetal and future child health, experiences of previous loss, and social interactions within both new and familiar settings. Expectant parents reported varying turning points and strategies associated with three distinct trajectories of relating to the fetus or "baby" yet to be born. These relational trajectories include claiming the child as one's own, delaying the connection to the fetus, and doing the routine of pregnancy. With the findings presented in this article, we extend the understanding of how parenting develops during pregnancy in the context of a fetal anomaly., (© The Author(s) 2014.)

Objective: Examine factors that mediate parent-infant relationships 12 months after positive newborn screening (NBS)., Methods: We examined effects of infant diagnosis, parents' perceptions of child vulnerability and child attachment, parental depression and anxiety on parent-infant feeding interactions for 131 mothers and 118 fathers of 131 infants whose NBS and diagnostics confirmed cystic fibrosis (CF, n = 23), congenital hypothyroidism (CH, n = 35), CF carrier status (CF-C, n = 38), or healthy normal NBS (H, n = 35)., Results: Separate composite indicator structural equation models for mothers and fathers showed that neonatal diagnosis was not associated with increased anxiety or depression. In comparison with the healthy group, CF group parents reported higher perceptions of child vulnerability (p < .001, p = .002), and CF-C group fathers viewed their children as more attached (p = .021). High maternal perception of child vulnerability was associated with low perceptions of child attachment (p = .001), which was associated with task-oriented feeding behavior (p = .016, p = .029). Parental task-oriented feeding behavior was associated with less positive (p < .001, p < .001) and more negative interactions (p < .001, p = .001) with their infants. High paternal perception of child vulnerability was associated with negative parent interactions (p < .001). High parental affective involvement and verbalization was associated with high infant affective expressiveness, communicative skills, and social responsiveness (mothers' p < .001, fathers' p < .001). High parental negative effect and/or inconsistent and intrusive behavior were associated with infant dysregulation and irritability (mothers, p < .001, fathers, p < .001)., Conclusion: The severity of conditions identified through NBS can affect parents' perceptions of their child's vulnerability and attachment. Infant feeding problems in the context of chronic health conditions, like CF, could represent signs of more deeply rooted concerns regarding the parent-child relationship that merit additional clinical evaluation.

Drawing on attachment and caregiving theory and the concept of motivation, the purpose of this descriptive study was to examine parents' retrospective accounts of their prenatal experiences after receiving the diagnosis of a fetal heart defect. These parents constituted a subgroup of participants in a larger longitudinal study of parenting an infant with a complex congenital heart defect. Data were derived from 14 semistructured interviews with 13 mothers and 3 fathers in the home or hospital setting. A directed content analysis yielded a central category of preparing heart and mind for infant caregiving. Preparing heart and mind is a preliminary caregiving goal within the caregiving system that generates intentions and expectations indicative of specific caregiving motivations to relate to the baby, handle circumstances practically, and manage infant medical care. A theoretical model illustrates the prenatal process these parents engaged in to provide care to their infants with life-threatening medical conditions.

We identified factors associated with elevated parental perceptions of child vulnerability (PPCV) 12 months after newborn screening (NBS) of 136 children: healthy, normal results (H, n = 37), cystic fibrosis carriers (CF-C, n = 40), congenital hypothyroidism (CH, n = 36), and cystic fibrosis (CF, n = 23). Controlling for infant and parent characteristics, mixed logit structural equation modeling showed direct paths to elevated PPCV included parent female sex, CF diagnosis, and high documented illness frequency. PPCV was positively associated with maternal parenting stress. Infants with CF and CF carriers had significantly more documented illness frequency than H group infants. The CH group did not differ significantly from the H group and had no paths to PPCV. Unexpectedly high documented illness frequency among infants who are CF carriers warrants further investigation., (Copyright © 2011 Wiley Periodicals, Inc.)

Nipple shields have become commonplace in the United States for a wide range of breastfeeding problems. This article is a summary of the current literature describing the evidence for nipple shield use. The authors reviewed all available articles on nipple shields and selected 13 studies for inclusion. The studies were organized into three categories: physiologic responses, premature infants, and mothers' experiences. This review concludes that current published research does not provide evidence for safety or effectiveness of contemporary nipple shield use.

This study used a retrospective comparison of 2 naturally occurring groups, first to examine how exclusive versus partial breastfeeding relates to duration of breastfeeding and, second, to determine if factors such as age and body mass index are associated with exclusive versus partial breastfeeding duration. These factors were hypothesized to influence the amount of breastfeeding in a sample of 42 low-income mothers enrolled in the Supplemental Nutrition Program for Women, Infants, and Children of a predominately rural, Midwestern county. This study examined de-identified data from a state database spanning a calendar year. Breastfeeding behavior, age, and body mass index measurements for mothers giving birth within the first 6 months of that year were analyzed. Exclusive breastfeeding mothers breastfed longer, were of older age, and had lower body mass indexes than partial breastfeeding mothers. These findings further describe characteristics of low-income breastfeeding women. Understanding how factors associated with exclusive versus partial breastfeeding affect breastfeeding duration may inform clinicians and researchers of areas for future interventions.