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Objective: This article characterizes the educational needs of parents following fetal or neonatal congenital heart disease (CHD) diagnosis and generates recommendations for meeting these needs., Study Design: Online crowdsourcing methods were used to collect qualitative data from 95 parents of children with CHD regarding their needs for education and preparation following fetal or neonatal diagnosis. Data were analyzed using qualitative methods and themes were organized around the substructure of met and unmet needs., Results: Two themes represented consistently met needs, whereas 10 themes represented needs that were either inconsistently met or consistently unmet. Parents reported needing more information about social, emotional, and financial supports, preparation for long-term care, and guidance toward reputable online resources. Parents also provided recommendations for meeting these needs., Conclusion: Parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive. Addressing these may support parental coping and active participation in medical decision-making., Key Points: · CHD counseling after diagnosis may provide opportunities to promote parents' mental health.. · Guidelines recommend that this counseling should include emotional and decision-making support, however, it is unclear what parents actually receive.. · This study found that parents' needs for education and preparation following CHD diagnosis are much broader in scope than what they currently receive.., Competing Interests: None declared., (Thieme. All rights reserved.)

Prenatal diagnosis of congenital heart disease (CHD) can be a life-altering and traumatic event for expectant parents. Parental anxiety, depression, and traumatic stress are common following a prenatal cardiac diagnosis and if untreated, symptoms often persist long-term. During prenatal counseling, parents must try to manage psychological distress, navigate uncertainty, process complex medical information, and make high-stakes medical decisions for their unborn child and their family. Physicians must deliver the diagnosis, describe the expected perinatal management plan, discuss short and long-term prognoses and introduce elements of uncertainty that may exist for the particular diagnosis. Physican training in these important skills is highly variable and many in our field acknowledge the need for improved guidance on best practices for counseling and supporting parents during pregnancy and early parenthood after prenatal diagnosis, while also sustaining physicians' own emotional well-being. We describe these challenges and the opportunities that exist to improve the current state of prenatal counseling in CHD., Competing Interests: Declaration of Competing Interest The authors report no proprietary or commercial interest in any product mentioned or concept discussed in this article., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: Limited opportunities for parents to care for their critically ill infant after cardiac surgery can lead to parental unpreparedness and distress., Purpose: This project aimed to create and test a bedside visual tool to increase parent partnership in developmentally supportive infant care after cardiac surgery., Methods: The Care Partnership Pyramid was created by a multidisciplinary team and incorporated feedback from nurses and parents. Three Plan-Do-Study-Act (PDSA) cycles tested its impact on parent partnership in care. Information about developmentally supportive care provided by parents during each 12-hour shift was extracted from nursing documentation. A staff survey evaluated perceptions of the tool and informed modifications., Results: Changes in parent partnership during PDSA 1 did not reach statistical significance. Staff perceived that the tool was generally useful for the patient/family but was sometimes overlooked, prompting its inclusion in the daily goals checklist. For PDSA 2 and 3, parents were more often observed participating in rounds, asking appropriate questions, providing environmental comfort, assisting with the daily care routine, and changing diapers., Implications for Practice: Use of a bedside visual tool may lead to increased parent partnership in care for infants after cardiac surgery., Implications for Research: Future projects are needed to examine the impact of bedside care partnership interventions on parent preparedness, family well-being, and infant outcomes.

Objectives: To identify parents' preferences for goals and structure of intervention programs to support the psychosocial needs of families impacted by congenital heart disease (CHD)., Study Design: Information about parent priorities for psychosocial programs was obtained in this mixed-methods study conducted at a pediatric hospital in the Mid-Atlantic region of the US. Participants were parents (N = 34; 20 mothers, 14 fathers) of children with CHD between the ages of 1 and 3 years who had cardiac surgery at less than 6 months of age. Qualitative data were excerpts from semistructured interviews. Quantitative data were participant choices regarding their ideal psychosocial program resulting from a card sort., Results: Parents reported that psychosocial interventions should support partnership in their child's care, promote self-care, facilitate communication with providers, prepare parents for challenges after hospitalization, provide education about child neurodevelopment, and help parents engage social support. Parents reported needing formalized support across care, brief intervention models, in-person individualized or small group support, and involvement of multidisciplinary providers and peer mentors in the delivery of interventions., Conclusions: Parents of children with CHD need psychosocial interventions that empower them to act as primary caregivers and effective advocates for their child. Individualized, formalized, and multidisciplinary approaches to psychosocial care are necessary to best accommodate the dynamic stressors related to parenting a child with CHD and may mitigate the impact of parent mental health problems on child outcomes., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Introduction: Congenital heart disease (CHD) is one of the most common causes of infant admission to pediatric intensive care and is associated with profound psychological stress for mothers, fathers and their infants. Intensive care unit admission represents an opportunity to offer evidence-based strategies to prevent or minimize severe psychological distress and promote secure bonding and attachment, alongside high-quality infant medical care., Objectives: We aimed to identify, synthesize and critically appraise published evidence on the efficacy and cost-effectiveness of mental health interventions delivered in neonatal, pediatric or cardiac intensive care units for parents of infants with CHD. A secondary goal was to develop recommendations for advancing health policy, practice and research in the field., Methods: In accordance with a prospectively registered protocol (CRD42019114507), six electronic databases were systematically searched for studies reporting results of a controlled trial of a mental health intervention for parents of infants aged 0-12 months with a congenital anomaly requiring intensive care unit admission. To maximize generalizability of results, trials involving infants with any type of structural congenital anomaly requiring surgery were included. Outcomes included intervention type, process, efficacy, and cost-effectiveness., Results: Across all forms of congenital anomaly, only five trials met inclusion criteria (four in CHD, one in gastrointestinal malformation). All interventions engaged parents face-to-face, but each had a distinct therapeutic approach (parent-infant interaction and bonding, early pediatric palliative care, psycho-education, parenting skills training, and family-centered nursing). Four of the five trials demonstrated efficacy in reducing maternal anxiety, although the quality of evidence was low. Positive results were also found for maternal coping, mother-infant attachment, parenting confidence and satisfaction with clinical care, as well as infant mental (but not psychomotor) development at 6 months. Mixed results were found for maternal depression and infant feeding. No evidence of efficacy was found for improving parent, infant or family quality of life, physical health or length of infant hospital stay, and there were no data on cost-effectiveness., Conclusions: Stronger evidence for the efficacy of mental health interventions to buffer the effects of intensive care unit admission for parents of infants with CHD is urgently needed. Robust, high-quality trials are lacking, despite the established need and demand, and health policies prioritizing parent mental health care in the context of early childhood adversity are needed., (Copyright © 2019 Elsevier B.V. All rights reserved.)

Objective: To examine the clinical utility of the Pediatric Symptom Checklist 17 for identifying psychosocial concerns and improving access to psychology services within a paediatric cardiology clinic., Method: Parents of 561 children (aged 4-17 years) presenting for follow-up of CHD, acquired heart disease, or arrhythmia completed the Pediatric Symptom Checklist 17 as part of routine care; three items assessing parental (1) concern for learning/development, (2) questions about adjustment to cardiac diagnosis, and (3) interest in discussing concerns with a behavioural healthcare specialist were added to the questionnaire. A psychologist contacted the parents by phone if they indicated interest in speaking with a behavioural healthcare specialist., Results: Percentages of children scoring above clinical cut-offs for externalising (10.5%), attention (8.7%), and total (9.3%) problems were similar to a "normative" primary-care sample, whereas fewer children in this study scored above the cut-off for internalising problems (7.8%; p<0.01). Sociodemographic, but not clinical, characteristics were associated with Pediatric Symptom Checklist 17 scores. 17% of the parents endorsed concerns about learning/development, and 20% endorsed questions about adjustment to diagnosis. History of cardiac surgery was associated with increased concern about learning/development (p<0.01). Only 37% of the parents expressing psychosocial concerns reported interest in speaking with a psychologist., Conclusions: The Pediatric Symptom Checklist 17 may not be sensitive to specific difficulties experienced by this patient population. A questionnaire with greater focus on learning/development and adjustment to diagnosis may yield improved utility. Psychology integration in clinics serving high-risk cardiac patients may decrease barriers to behavioural healthcare services.