Despite increasing focus on the quality of life of children with critical congenital heart disease (CHD), relatively minimal improvement has been realized in neurodevelopmental and mental health outcomes over the past several decades (1). To date most efforts have centered around potentially modifiable surgical and medical factors, but as we increasingly understand the profound psychological stress experienced by family members of patients with CHD, we are discovering more about the interplay between parent mental health and child wellbeing (2,3). It is now evident that if we are serious about promoting interventions in the cardiac ICU (CICU) to improve longer-term patient outcomes, it is imperative we create an ecosystem that intentionally addresses family wellbeing with the same intensity that we devote to providing excellent traditional cardiac critical care.

This concept can admittedly seem daunting for the CICU team, who may not have the training or experience to feel comfortable addressing these issues. While vital, psychosocial care can also be perceived as time and resource intensive in the CICU environment, where sharp attention to dynamic changes in patient status is a persistent necessity. While we undoubtedly want what is best for our patients and their families, it can be natural for those of us providing critical care to children with CHD to believe that our sphere of influence and expertise is limited to the medical interventions we provide on a minute-by-minute basis. But as we strive to improve downstream outcomes for our patients, we are beholden to consider that how we support families in the CICU may be just as impactful as how we support blood pressure. How can we most effectively and efficiently foster an environment in which our sphere of influence expands beyond the immediate bedspace, holistically incorporating interventions to bolster family wellbeing just as intensely as we support the critically ill patient?

In this issue of Pediatric Critical Care Medicine, Driscoll et al (4) present parents’ perspectives on key components of family-based psychosocial care in CHD. Utilizing qualitative, crowdsourced data collected from 100 parents (72 mothers, 28 fathers) of children with CHD across the United States, the authors identified three broad pillars of family-based psychosocial care. As the authors point out, the psychosocial needs of each family and individual family member are distinct and changeable over time; however, parents in the study by Driscoll et al (4) consistently identified themes within each of the three pillars viewed to promote psychosocial support and caregiver wellbeing.

The first two pillars highlight strategies every provider in the CICU can take today to support families of children hospitalized with CHD. Pillar 1 highlights the importance of creating a culture in which the patient’s family is viewed as a vital member of the care team. We know that parental role alteration (5) and disruptions to the imagined or anticipated parenting experience (6,7) are significant stressors for parents of infants with CHD. While the CICU is an inherently unnatural environment for an infant and their family, it is important we insist upon seizing opportunities for parents to engage in the vital caregiving roles of nurturing, protecting, nourishing, and bonding with their child (8). When parents are included as central members of their child’s care team, they are more likely to feel a sense of control over their child’s outcomes, even in the face of prognostic uncertainty (9). Models of individualized family-centered care in the CICU (10,11) outline steps we can take to move away from a culture where parents are “allowed” to participate in their child’s care when convenient, and toward an environment where parents are engaged and supported as primary caregiver of their child, even during periods of critical illness. Collaboration, including actively involving patients and families in decision-making, goal setting and care planning, is central to this approach.

Pillar 2 reminds us of the importance of bringing our humanity into the interactions we have with our patients’ families. Rates of anxiety, depression, and even post-traumatic stress among parents of children with CHD are high (7–12). While we will never be able to fully buffer parents from the stress of having a child hospitalized with critical CHD, family responses in the study by Driscoll et al (4) indicate that even small efforts to acknowledge the difficulties of a family’s situation, and the simple act of asking how a parent is doing, can go a long way to mitigating the adverse consequences of stress. It is worthwhile to remind ourselves that even if we perform a pristine complex cardiac repair and navigate a child through a flawless CICU course, if we discharge the child to an emotionally devastated family, we have not provided truly excellent care. Or even adequate care. In adopting a holistic view of our patients and their experiences, it is imperative we not only insist upon reducing mortality and medical morbidity, but that we do all within our capacity to optimize outcomes for the whole family.

Pillar 3 highlights the importance of integrated psychosocial care and peer support for parents and families of children with CHD. This finding is directly aligned with a recently published Scientific Statement from the American Heart Association on “Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease” (13). This Statement, which includes a state-of-the-art review of psychological risk and resilience factors, serves as a call to action, asking us all to make mental health care an ordinary, routine, and expected part of congenital heart care. If we are to accept this call to action, then we must encourage a cultural shift whereby mental health professionals are included as essential members of the CICU (and broader congenital heart care) team. While there is strong evidence that parental anxiety and depression can be prevented (14) and treated (15), barriers to psychological care continue to exist at the systems (e.g., fragmentation, under-prioritization), provider (e.g., lack of time, knowledge), and patient levels (e.g., stigma, mistrust, discrimination) (16). Integrating psychosocial interventions within health services with which families are already engaged has been shown to improve intervention access and uptake, interdisciplinary healthcare coordination, and parent mental health and parenting outcomes (7–17). In the neonatal ICU (NICU), for example, targeted psychosocial interventions reduce parent anxiety and depression, increase positive parent-infant interactions, and shorten NICU and total hospital length of stay (18). Importantly, parents not offered psychosocial support during their infant’s hospital admission report a significantly greater risk of postnatal depression 1-month after discharge compared with those offered support (18). It is past time that such initiatives be routinely implemented in the CICU.

In their qualitative data, Driscoll et al (4) also found parents with lower family income frequently described instances of feeling excluded from medical decision-making for their child. More broadly, research consistently demonstrates that social determinants of health impact CHD outcomes and are associated with longer hospital stays (19,20), higher emergency department (21) and readmission rates (21–23), suboptimal adherence to care (23), and increased mortality across the lifespan (24). Such disparities likely also affect mental health outcomes, since social factors and mental health are tightly related (25,26). In the context of structural racism and socioeconomic inequities, rates of maternal anxiety and depression in the perinatal period (from conception to the first year postpartum) are nearly double for women of color and those experiencing poverty (27). In the CICU, we have an opportunity and a responsibility to identify the social factors that may adversely affect health outcomes and work as a collaborative, multidisciplinary team to offer appropriate interventions and community-based resources. Selection of specific supportive or therapeutic approaches should be culturally sensitive and commensurate with the individual parent’s needs, preferences, abilities, and priorities.

To be truly family-centered in our approach to care in the CICU, we must include the perspectives of parents and family members from diverse backgrounds and recognize the need to tailor our interventions to meet the needs of those in our care. Despite decades of research investigating psychological outcomes of parents of children with heart disease, and strong advocacy by patients, families, researchers, and healthcare professionals, more is needed to move mental health initiatives forward in the clinical setting. To offer our patients and their families the best possible quality of life, it is time to move from awareness to action, and to galvanize our collective efforts to integrate family-centered psychosocial care in the CICU.

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