Bioethics Forum Essay
Parents, Covid, and Trauma-Informed Choices
As the parent of a child under 5 years old, I am worried about what lies ahead for kids and Covid-19. The more contagious Delta variant is widely circulating, infecting kids at higher rates and making some kids more seriously ill than previous variants. When I talk with other parents, we are anxious about our kids’ health and social and emotional well-being. We’re making tough choices about schooling and playdates and family visits, sometimes involving sadness and regret. Everyone’s tolerance for risk is different. But whatever their threshold, parents are vigilantly reassessing risks every time new information emerges–which seems to be constantly.
One thing I have reassessed is my willingness to enroll my child in a Covid-19 vaccine trial. This spring I was uncertain. This summer, as the FDA asked Moderna and Pfizer to expand enrollment in pediatric trials, I wish study sites in my region were enrolling more participants and my child could be one of them.
Technically, I don’t have more information about the safety of Covid vaccines for kids my child’s age than I did a few months ago: this is the very information the trial is collecting. Other evolving facts about the virus and my society shape my current calculation of risks and benefits. If I am being honest, this calculation is also shaped by fear.
My scholarship with Uchenna Anani on trauma-informed ethics consultation analyzes how histories of traumatic experiences and events shape perceptions and reactions to other people and to situations–including ethical dilemmas in medical contexts. Trauma-informed care transforms questions like “what is wrong with you?” to “what happened to you?” and recognizes that traumatic (and re-traumatizing) experiences can contribute to behaviors, actions, or choices perceived as difficult or irrational.
The pandemic is collectively and individually traumatic. Trauma-informed care recognizes trauma is pervasive and responds with principles of trust, transparency, safety, collaboration, empowerment, humility, cultural awareness, and peer support. A trauma-informed approach during the pandemic resists asking “what is wrong” with people choosing against vaccination or masking. Instead, it asks what is going on or what happened to them.
I could pretend that dispassionate engagement with data alone informs my choices to wear masks and vaccinate as soon as possible. But shining a trauma-informed light to ask what is going on with my decision-making reveals that stress and anxiety are influencing my choices. Acknowledging that the trauma of the pandemic can lead me to affirm my trust in science invites humility. It could also be a source of affiliation, and possibly peer support and collaboration, with those for whom fear, anxiety, or histories of individual or collective trauma lead to skepticism of science or contribute to structural barriers to vaccination.
In a pluralistic and often polarized society, asking what happened to (or what is going on for) people, and identifying points of shared experience, could support not only civil deliberation, but also honest, vulnerable, and productive conversation. Emotions play a role in how people assess risks–in relation to (and in the absence of) information. Worry, stress, fear, anxiety, guilt, or anger–whether over our families, jobs, health, or communities–can be areas of convergence, even when choices we make because of them differ.
An international study conducted last year showed that only about a fifth of parents were willing to enroll their children in a hypothetical Covid-19 vaccine trial. This figure was even smaller if it was a randomized control trial with a 50% chance of a child receiving a placebo. I find weighing the risks of receiving a placebo complicated.
Study participants who receive placebos in a pediatric vaccine trial are the first to get the vaccine when it is authorized. But, if my kid were enrolled in a study of one pediatric vaccine with a placebo, another pediatric vaccine could get approved first. Completing the trial could delay when my child could be vaccinated. Though controversial, some have even suggested kids could receive vaccines off-label following full FDA approval for adult use. Yet my moral commitment that individuals have obligations to contribute to collective goods supports enrolling my child in a study that could contribute to data collection leading to authorization, and eventually approval, of safe and effective pediatric vaccines.
The study on parents’ willingness to enroll children in Covid vaccine trials found that in 2020 overall parental concern about Covid was low and greater concern did not increase willingness to enroll in a trial. I can’t help but suspect these findings would be different now, when parents like me are increasingly concerned, worried, and anxious, and are making decisions amidst the compounding stress of the pandemic.
At this point, whether through a clinical trial or following FDA authorization, I want my kid vaccinated as soon as possible.
Elizabeth Lanphier, PhD, MS, (@EthicsElizabeth) is an assistant professor in the Ethics Center at Cincinnati Children’s Hospital Medical Center, the Division of General and Community Pediatrics, and Department of Pediatrics at the University of Cincinnati College of Medicine.