Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative.

Diagnosis of CHD substantially affects parent mental health and family functioning, thereby influencing child neurodevelopmental and psychosocial outcomes. Recognition of the need to proactively support parent mental health and family functioning following cardiac diagnosis to promote psychosocial adaptation has increased substantially over recent years. However, significant gaps in knowledge remain and families continue to report critical unmet psychosocial needs. The Parent Mental Health and Family Functioning Working Group of the Cardiac Neurodevelopmental Outcome Collaborative was formed in 2018 through support from an R13 grant from the National Heart, Lung, and Blood Institute to identify significant knowledge gaps related to parent mental health and family functioning, as well as critical questions that must be answered to further knowledge, policy, care, and outcomes. Conceptually driven investigations are needed to identify parent mental health and family functioning factors with the strongest influence on child outcomes, to obtain a deeper understanding of the biomarkers associated with these factors, and to better understand how parent mental health and family functioning influence child outcomes over time. Investigations are also needed to develop, test, and implement sustainable models of mental health screening and assessment, as well as effective interventions to optimise parent mental health and family functioning to promote psychosocial adaptation. The critical questions and investigations outlined in this paper provide a roadmap for future research to close gaps in knowledge, improve care, and promote positive outcomes for families of children with CHD.

Fathers' Stress in the Neonatal Intensive Care Unit: A Systematic Review.

BACKGROUND: Admission to the neonatal intensive care unit (NICU) is stressful for parents. Nurses often focus on maternal well-being and fail to acknowledge the stress of fathers. Research on fathers' psychological stress is limited. PURPOSE: A systematic review of the literature was completed to examine the extent of psychological stress and types of stressors in fathers with infants admitted to the NICU. METHODS/SEARCH STRATEGY: A search of Ovid MEDLINE, Cochrane Library, PsycINFO, CINAHL, and EMBASE was conducted to identify descriptive and observational studies reporting father-specific stress in the NICU. Studies using observational and descriptive designs, published in English, and reporting father-specific stress outcomes during a NICU admission were eligible for inclusion. Strengthening the Reporting of Observational Studies in Epidemiology guidelines were used for quality assessment. RESULTS: Fifteen studies met inclusion criteria. Fathers find the NICU environment stressful and are more stressed than fathers of full-term, healthy infants. Parental role alteration, infant appearance, NICU environment, and staff communication are stressors. IMPLICATIONS FOR PRACTICE/RESEARCH: By recognizing the extent and types of psychological stress in fathers, nurses can provide better support for fathers in their new role. Younger fathers and those with very low birth-weight premature infants may need additional support and resources. Future research on fathers' stress should include larger sample sizes, diverse populations, and tool development and evaluation.

Quality of Life for Parents of Children With Congenital Heart Defect: A Systematic Review.

BACKGROUND: As survival rates for infants born with severe forms of cardiac defects (congenital heart defect [CHD]) improve, attention is directed to evaluating factors that affect the child's short- and long-term outcomes including parental quality of life (QOL). PURPOSE: The purpose of this review was to identify how parental QOL is affected when having a child with a CHD. Factors that influence parental QOL when having a child with a CHD will also be described. METHODS: A systematic search of CINAHL, EMBASE, PsycINFO, and PubMed databases was performed. Thirty-three quantitative cross-sectional or cohort studies were selected for inclusion and analyzed for quality reporting using Strengthening the Reporting of Observational Studies in Epidemiology guidelines. RESULTS: Heart defect severity, age of child, perceived support, and availability of economic resources were identified as factors affecting parental QOL. Parent gender was related to QOL and family functioning factors. Paternal outcomes were reported in 23 of the 33 studies (70%), with an average father participation rate of 40%. CONCLUSIONS: Having a child with CHD negatively affects parental QOL. Future research should include targeting fathers to improve understanding of their unique perceptions and needs. Longitudinal studies should also describe correlations of parental QOL with their child's developmental outcomes. Efficacy studies testing supportive interventions on outcomes such as improved adjustment and QOL are needed.