Table 2.

Parent mental health and family functioning: critical questions, significant gaps in knowledge, and investigations needed

Critical questions	Significant gaps in knowledge	Investigations needed
CQ1. Which parent mental health and family functioning factors are associated with child neurode- velopmental and psychosocial outcomes? How are these associations mediated and/or moderated by additional factors?	• Many prior studies have been conducted without a guiding theoretical model, resulting in unnecessary heterogeneity in constructs and measures, and difficulty in synthesising results across studies. • Underlying mechanisms via which parent MH and FF influence child outcomes are largely unknown. • Parent, child, and environmental characteristics that moderate associations between parent MH, FF, and child outcomes are unknown.	• Ensure that future research is guided by a theoretical model. • Investigate potential mediators and moderators. • Identify measures to assess constructs within a selected theoretical model
CQ2. What methodologies can be used to investigate associations between parent mental health and biological markers of stress?	• Extent to which maternal stress responses in the pre and perinatal period influence child outcomes in the context of CHD is not known. • Biological factors that provide the best indication of risk for stress/distress in children with CHD and their parents have not been identified. • Emotional and biobehavioural attunement (or misattunement) in the developing CHD parent- infant relationship has not been sufficiently studied.	• Establish an evidence base for the use of biomarkers of stress and distress in research with parents and their children with CHD. • Investigate associations between biological, psychological, and social responses to stress and distress in parents and their children with CHD.
CQ3. How do parent mental health and family functioning change and influence child neurodeve- lopmental and psychosocial outcomes over time? Which parent, child, and environmental factors mediate and moderate the trajectories of parent mental health and family functioning?	• There are limited data on how parent MH and FF fluctuate over time, when parents and families may be at greatest risk, and the extent to which associations between parent MH, FF, and child outcomes are causal. • Parent, child, and environmental characteristics that influence trajectories of parent MH and FF (including positive outcomes) are unknown.	• Conduct longitudinal research to evaluate relationships between parent MH, FF, and child neurodevelopmental and psychosocial outcomes. • Leverage multisite clinical registries to collect data on parent MH, FF, and child neurodevelopmental and psychosocial outcomes. • Utilise qualitative and mixed methods to understand the experiences of families over time.
CQ4. How and when should parent mental health and family functioning be assessed in clinical care settings?	• Not clear which aspects of parent MH and FF (including both risk and protective factors) are most important to assess at which time points. • Factors impacting the feasibility and acceptability of MH and FF screening within routine clinical practice are unknown. • Impact of screening on access to care and parent, family, and child outcomes is unknown.	• Identify optimal tools and timing for screening and assessment of parent MH and FF. • Determine feasibility and acceptability of screening and assessment processes for diverse stakeholders. • Evaluate whether screening of parent MH and FF increases access to care and improves outcomes.
CQ5. How and when should interventions be offered to bolster parent mental health and family adaptation, and optimise child neurodevelopmen- tal and psychosocial outcomes?	• Limited rigorous RCTs to determine the efficacy of interventions for CHD families and no data on the potential cost-effectiveness of intervention. • Comparative effectiveness, mechanisms of action, and feasibility of heterogeneous intervention approaches are largely unknown. • Extent to which evidence-based interventions for other patient populations can be adapted for CHD is unknown. • Effects of incorporating shared decision-making, peer support, and technology into interventions are unknown.	• Evaluate interventions using rigorous randomised controlled efficacy trials, followed by effectiveness trials that guide real-world implementation. • Adapt interventions developed for other high-risk populations and determine optimal intervention content, format, timing, and dose. • Explore effects of incorporating shared decision-making and peer support into interventions. • Explore technology-based modes of intervention delivery.

CHD = congenital heart disease; CQ = Critical Question; FF = family functioning; MH = mental health; RCT = randomised controlled trial.