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.

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.

Development and testing of a self-report measure of preparing to parent in the context of a fetal anomaly diagnosis.

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.

Coronary sinus morphology in pediatric patients with supraventricular tachycardia.

PURPOSE: The anatomic basis of atrioventricular node reentrant tachycardia (AVNRT) remains incompletely characterized in children. Differences in coronary sinus (CS) size and morphology have been observed in adults with AVNRT but have not been well characterized in children. METHODS: Children (< 18 years) brought to the EP lab with supraventricular tachycardia for ablation underwent CS venography. A blinded pediatric interventional cardiologist performed CS measurements, which were indexed to body surface area. Patients were excluded if they were < 25 kg or had significant congenital heart disease. RESULTS: Forty-six patients (age 14.2 ± 3.3 years) met inclusion criteria, 17 with AVNRT and 32 with an accessory pathway (AP). CS ostium (LAO projection, end-systole) was 7.8 ± 2.9 mm/m2 for the AVNRT group versus 6.0 ± 2.5 mm/m2 for the AP group (p = 0.04). CS "windsock" morphology was more prevalent in the AVNRT group (16/17, 94.1%) than the AP group (11/32, 34.3%) (p < 0.001). Within the AVNRT group, there was no correlation between CS ostium size and tachycardia cycle length (R = 0.01, p = 0.96), fast-pathway ERP (FPERP) (R = 0.42, p = 0.12), or A2-H2 at the FPERP (R = 0.25, p = 0.39). CONCLUSIONS: Children with AVNRT have larger CS ostia and more prevalent windsock morphology. CS size/morphology did not correlate with EP properties of the AVNRT substrate. These features may explain the basis for the development of the electrophysiologic substrate for dual AV node physiology in children.