Jacob, a father from a low-income, rural background, has vivid flashbacks of seeing his newborn intubated. Confused at why his mind keeps replaying the scene, he struggles to concentrate at work and earn the paycheck he needs to make ends meet for his family. Whenever he makes the long drive to the hospital for his newborn’s follow-up visits, he feels the same intense panic he felt in the NICU and becomes overwhelmed with worries about all the pending medical costs.

Jacob is not alone. He is one of many parents who experience symptoms of trauma while caring for a child with medical complexity.

Caregivers (parents or another primary caregiver) of children with serious health conditions face higher rates of mental health concerns relative to those with healthy children. Studies have shown that nearly 1 in 5 parents of children with chronic illnesses meet criteria for PTSD, and an even larger number of these parents show posttraumatic stress symptoms (PTSS) that fall below the threshold for full PTSD criteria. Both PTSD and PTSS can occur as a result of witnessing, being involved in, or being informed of a traumatic event that happened to a loved one, including a child. Potentially traumatizing events for caregivers of children with serious health conditions might include learning of their child’s serious diagnosis, miscommunication with the medical team, witnessing their child struggle to cope with blood draws, or learning of an emergency medical procedure their child must undergo.

This type of PTSD or PTSS is often referred to as medical traumatic stress, the term used to broadly describe traumatic stress reactions to pain, injury, illness, and medical procedures. Exposure to medical traumatic stress can overwhelm a caregiver’s ability to cope and can trigger a range of symptoms, including sleep disturbance, intrusive thoughts and memories, and heightened emotional states. However, given their skillfulness in being “on” and attentive to the needs of their child, caregivers of children with serious health conditions may not exhibit overt or textbook signs of traumatic stress. They might appear outwardly calm and find it difficult to both recognize and articulate their own needs, especially when their child’s medical care is the collective focus. As a result, the impact of medical traumatic stress on these caregivers may be overlooked or underacknowledged.

So, what can be done?

For starters, implementing and expanding all prevention and intervention efforts for caregivers of children with serious health conditions is necessary. Research shows that evidence-based interventions designed to address mental health concerns among caregivers work for many. For example, Acceptance and Commitment Therapy (ACT) appears to be a promising treatment for reducing stress among parents of children with asthma, as well as parents of children with autism. Interventions like these are important and necessary but are unfortunately not readily accessible to caregivers in most pediatric health care settings.

Thus, creatively identifying how to best conquer the where and how caregiver services are offered is of concern. As explained in a recent review, there are three major pathways to support the mental health of parents/caregivers of children with serious health conditions: “1) subsume caregiver support as part of the child’s care, 2) refer the caregiver to a provider outside of the hospital setting, or 3) treat the caregiver within the pediatric hospital setting.” More research is needed to determine which pathway or combination thereof will best meet the needs of caregivers, but movement toward the third option may reduce several barriers to care.

Next, given the high prevalence of PTSD and PTSS among caregivers of children with serious health conditions, attention must be given to ensuring trauma-informed care at all levels of the health care system. At the individual level, clinicians can start with the recognition that these caregivers are more likely than not to have been exposed to medical traumatic events in the process of caring for their child. At the systems level, trauma-informed care for caregivers of children with serious health conditions might look like: including a caregiver wellbeing specialist (e.g., psychologist, social worker) in all pediatric emergency response teams and using triage systems to provide anticipatory guidance on medical traumatic stress and its potential impact on caregivers. By intervening with caregivers as part of trauma-informed care for pediatric patients, we may be able to reduce burden and guilt experienced by caregivers and equip them to better support themselves and their child.

As research on trauma-informed care of caregivers of children with serious health conditions expands, consideration of more structural change is essential. Individual-level interventions alone cannot address the expansive systemic inequities that differentially impact caregivers based on their identities and sociocultural contexts. For example, it is well documented that children with serious health conditions are disproportionately of non-White, rural, and/or poor family backgrounds. These and other pediatric health disparities directly impact caregivers, such that their mental health and medical traumatic stress experiences cannot be separated from the effects of systemic inequities.

To best serve the whole family, the overall mental health and trauma-informed care of caregivers must be viewed as a matter of social justice. Doing so allows us pediatric health care providers to both reimagine and brainstorm services for caregivers that include not only the individual but also the current systems of care. From the lens of social justice, supporting caregivers of children with serious health conditions might include:

• Integrating the mental health and trauma-informed care of caregivers into the health care organization’s existing equity, inclusion, and diversity plans and priorities.
• Ensuring all trauma-informed care trainings explicitly label the trauma of historical, intergenerational, and ongoing inequities in relation to caregiver mental health.
• Conducting universal screening of Adverse Childhood Experiences (ACEs) for all caregivers, with the recognition that higher ACEs can increase the likelihood of developing PTSD or PTSS related to medical traumatic stress.
• Partnering with community leaders and caregiver-led organizations (e.g., Courageous Parents Network) to redistribute power and share decision-making when developing or implementing services for caregivers.
• Expanding research efforts focused on caregivers: Methods like community-based participatory action research may be especially helpful to ensure caregivers directly benefit from scholarly activities and are given agency in capturing their unique needs and experiences.

Jacob’s story illustrates the need to examine the interlocking effects of medical traumatic stress and systemic inequities among caregivers of children with serious health conditions. To truly provide trauma-informed care for Jacob and the millions of caregivers like him, an understanding of the trauma inherent in social injustice is required. After all, there is no separating medical traumatic stress from the traumatic stress of living with the effects of oppression and inequity. As pediatric health care providers, we must champion efforts to include the mental health and trauma-informed care of caregivers in the fight against social injustice, in our health care organizations and beyond.

Kody Sexton is a graduate student. Meghan Marsac and Christina Salley are pediatric psychologists.