Nurse-guided Mobile Health Care Program to Reduce Emotional Distress Experienced by Parents of Infants Prenatally Diagnosed with Critical Congenital Heart Disease: A Pilot Study.

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.

An mHealth, patient engagement approach to understand and address parents' mental health and caregiving needs after prenatal diagnosis of critical congenital heart disease.

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.

Risk Factors for Tube Feeding at Discharge in Infants Undergoing Neonatal Surgery for Congenital Heart Disease: A Systematic Review.

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.

The Impact of Human Milk on Outcomes for Infants with Congenital Heart Disease: A Systematic Review.

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.

Feeding infants with complex congenital heart disease: a modified Delphi survey to examine potential research and practice gaps.

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.