Research Summaries | Patient Centered Care and Trauma Informed Care for Pediatric Patients

Key Research Findings

Research over the past several decades has helped expand our understanding of pediatric medical traumatic stress and how to help.

Traumatic stress reactions associated with pediatric medical events were described initially in the mid-1980s. The first large multi-site study of childhood cancer survivors highlighted the significance of traumatic responses in the survivors' mothers and fathers (Kazak et al, 1997). Studies documenting traumatic stress symptoms in children and parents after pediatric injury soon followed (DeVries et al. 1999).

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Summary: Pediatric Traumatic Stress Studies

Percent of children & parents with significant traumatic stress symptoms after medical events

Summary of research findings from The Children's Hospital of Philadelphia. Summarized from peer-reviewed research studies, 1999-2009. Note: Traumatic stress levels in children in pediatric intensive care has not yet been well-documented.

Initial studies focused on documenting the prevalence of traumatic stress reactions in children facing illness, injury, or medical treatment, and in their family members. A systematic review of over 200 pediatric traumatic stress studies found that the rate of significant pediatric medical traumatic stress (PMTS) was approximately 30% across pediatric medical populations (Price et al., 2016).

Prevalence studies have documented that there is variation in development of traumatic stress reactions in ill or injured children and their family members. Thus research has begun to identify risk and protective factors to help identify those who need follow-up, as well as malleable etiological factors to inform prevention and treatment approaches.

Pediatric traumatic stress studies continue to make progress in developing screening tools, early and brief interventions, and web-based interventions, as well as face to face support for children and families for pediatric medical traumatic stress.

Promising screening tools have been developed to identify children with more severe acute traumatic stress reactions, injured children at higher risk for persistent traumatic stress, and families of children with cancer and other conditions with greater need for psychosocial support.

Programs of preventive intervention for families of children with a new cancer diagnosis, parents of preterm infants admitted to the NICU, and children hospitalized for acute medical events, have been developed. Evidence supports the utility of online and face-to-face interventions, and more pediatric traumatic stress studies focused on prevention and intervention are underway.

Research data supports the use of treatment programs specifically designed to address cancer-related traumatic stress in teen cancer survivors and their families, and cognitive-behavioral therapy for children with traumatic stress related to acute medical events.

Research Evidence about Medical Traumatic Stress in Childhood Illness and Injury

Prevalence research: How common are traumatic stress reactions related to pediatric medical events?

father an son_prevalence traumatic stress

The prevalence of traumatic stress reactions can vary across conditions. In general, higher rates are found closer in time to acute medical events (an injury or new diagnosis, onset of a new illness or treatment) and rates decline a bit over time. Systematic reviews have summarized the research evidence to date (Kazak et al., 2006;Price et al., 2016):

Cancer: The prevalence of PTSD symptoms in child cancer survivors ranges from 8 - 75%. In parents, within the first month post diagnosis PTSD rates range from 40 - 83%, dropping to 18 - 33% six months post diagnosis and 7 - 27% over 10 months post diagnosis. Higher rates are found among samples of older children, suggesting a developmental trajectory. Persistent PTSD symptoms in child cancer survivors have been associated with other psychosocial concerns in young adulthood.

Injury: Child PTSD rates range from 22 - 42% within the first month after an injury, from 1 - 38% two to nine months post injury, and 10 - 19% ten months or more post injury. Parental PTSD rates range from 10 - 22% in the first month post injury, 5 - 11% within 6 months post injury, and 0 - 18% ten or more months post injury.

Other conditions: A number of studies have documented longer-term traumatic stress symptoms and PTSD in children and parents facing other conditions and a range of medical treatments, such as intensive care (ICU) admission, diabetes, or organ transplantation. For example, 12 - 84% parents of children admitted to intensive care report some PTSD symptoms within the first 6 weeks and 13 - 30% continue to experience symptoms at 6+ months post discharge. In teens 1 year post transplant (heart, liver or kidney), approximately 16% met PTSD criterion in two of three symptom clusters. In parents of children diagnosed with diabetes, 5 - 24% of parents within the first 6 weeks of diagnosis experiences PTSS symptoms, rising to 10 - 42% of parents 6+ months after diagnosis.

Family members

Persistent traumatic stress symptoms have been documented in parents and siblings of childhood cancer survivors, parents of transplant recipients, parents of children with epilepsy, parents of burn patients, and parents of injured children. Systematic reviews have found:

PTSD prevalence rates of approximately 20% in parents of chronically ill children (Cabizuca et al., 2009).
PTSD symptoms and poorer quality of life, but also positive changes and growth, in siblings of pediatric cancer patients (Alderfer et al., 2010).

Research on risk factors and etiology: What influences development of medical traumatic stress? Who is at higher risk?

Research evidence consistently indicates that objective characteristics of illness or injury (e.g. severity, complexity) are not strongly related to subsequent traumatic stress symptoms.

Across both injury and illness, evidence suggests that it is the perception of life threat, and the subjective appraisal of severity of injury / illness and intensity of treatment that lead to greater traumatic stress reactions.

However, there is some evidence that the severity or intensity of procedures during intensive care, or the scarring or disfigurement associated with some injuries, can be associated with more severe traumatic stress reactions.

Research studies have identified a range of other risk and protective factors associated with the development of persistent traumatic stress (for meta-analyses / systematic reviews, see: Kahana et al., 2006; Cox et al, 2008; Alisic et al., 2011; Trickey et al., 2012).

Risk factors for persistent traumatic stress in ill or injured children

Pre-existing child, parental or family factors

Pre-existing anxiety and/or other psychological difficulties
History of trauma exposure or past traumatic stress symptoms

Early physiological and psychological responses

More severe acute traumatic stress symptoms (emerging within a few hours or days of a medical event)
Early physiological arousal in injured children (e.g., elevated heart rate in the ED or hospital)

Aspects of the medical condition or resulting treatment experiences

Length of hospitalization and intensity of treatment in intensive care
Separation from parents (and separation anxiety) during emergent care or hospital treatment
More severe pain or exposure to frightening sights and sounds while in the hospital
A subjective sense of life threat and injury / illness severity

Maladaptive coping strategies

Social and emotional withdrawal
Extreme avoidance of things that are reminders of a traumatic event

Protective factors that may reduce development of traumatic stress in ill or injured children

Social support

Parent presence and support
Maintaining, or re-establishing, age-appropriate social activities and friendships
Availability of family or friends who can listen and understand

Healthy coping

A range of coping strategies seem to be adaptive - each individual may be a bit different.
Seeking social support, and using pro-active coping (in situations where problem-solving is appropriate or possible) appear to be useful.

Risk factors for traumatic stress in parents of ill and injured children

he parent’s own anxiety during treatment
Presence and severity of parental acute stress reactions
Fearing that their child would die (subjective sense of life threat for their child)
Worrying about relapse
Unexpectedness of hospital admission / medical event

"Posttraumatic growth" after injury or illness

Some research suggests children and families can experience positive changes from the experience of facing illness or injury. Pediatric medical traumatic stress and posttraumatic growth may occur together.

A comprehensive review found that positive changes reported by children and their families facing serious pediatric illness can include 'greater appreciation of life, improved interpersonal relationships, greater personal strength, recognition of new possibilities in one's life course, as well as spiritual or religious growth' (Picoraro et al., 2014).

Intervention research: What's the best approach to preventing and treating traumatic stress in ill or injured children (and their families)?

The research evidence consistently indicates that it is not necessary or effective to provide mental health treatment to ALL children or adults exposed to traumatic experiences.

Instead, best practice recommendations call for empirically-sound screening to identify those children (and parents) with more severe acute stress reactions that may warrant clinical attention, as well as those at greater risk of persistent distress who could benefit from further monitoring or preventive interventions. This approach has been termed "watchful waiting" or "screen and treat."

Research on screening

Identifying children with more severe acute stress reactions in the first few days or weeks after a medical experience can aid healthcare teams in appropriately addressing these early needs.

Another important aim of screening patients within the first few days to weeks of an acute injury or illness event is to identify those who are more likely to have persistent distress, to ensure that appropriate additional monitoring ("watchful waiting") or preventive interventions can be put in place.

For injured children, screening for acute stress reactions post-injury has shown the most promise for identifying children who will experience persistent PTSS many months later (Kassam-Adams et al., 2015).

Empirically-sound screening tools for acute stress reactions:

The Acute Stress Checklist for Children (ASC-Kids) is a 29-item measure (Kassam-Adams et al., 2013), also available in 3- and 6-item brief screening versions (Kassam-Adams et al., 2016), in English and Spanish. The ASC-Kids has been validated as a measure of acute traumatic stress symptoms in children after a range of acute traumatic events.
The Child Trauma Screening Questionnaire (CTSQ; Kenardy et al., 2006) is a 10-item measure with promising evidence for prediction of persistent traumatic stress reactions in injured children.

A distinct but related screening aim is to identify pediatric patients (and their families) who are likely to need more psychosocial resources to sustain optimal family functioning and participation in care, over the course of ongoing treatment for a chronic or life-threatening illness.

The Psychosocial Assessment Tool (PAT) (Pai et al. 2008) is a validated tool that identifies three risk levels for families of children newly diagnosed with cancer, and that has been adapted for use in other illness groups including: Sickle Cell Disease, Craniofacial, pediatric palliative care, and the Neonatal Intensive Care Unit.

Research on preventive interventions

A three-session manualized intervention for parents/caregivers of children newly diagnosed with cancer - Surviving Cancer Competently Intervention Program - Newly Diagnosed (SCCIP-ND) has preliminary data that supports its ability to reduce later traumatic stress symptoms in those families (Kazak, Simms et al., 2005) .

A brief intervention for mothers of preterm infants admitted to the NICU - PROMOMS for Preemies - was found to help prevent maternal traumatic stress reactions 6 months later (Shaw et al., 2014).

Preventive interventions that involve psychoeducation for children or for children and parents together, including self-directed online tools, have shown emerging evidence for effectiveness, according to a recent comprehensive research review (ISTSS Treatment Guidelines 2018). Many of the studies in this review involved children with acute medical events, most notably injury.

Several promising interventions aimed at supporting emotional recovery and preventing traumatic stress in injured children have preliminary evidence for their effectiveness (Haag et al., 2020) or are currently being evaluated (Ramirez et al., 2017; Ridings et al., 2019).

There is no current evidence for psychopharmacological interventions as preventive or early treatments for PMTS (ISTSS Treatment Guidelines 2018).

Research on treatment interventions

There has been limited research regarding treatment specifically designed for ill or injured children.

One notable exception is the Surviving Cancer Competently Intervention Program (SCCIP; Kazak et al., 1999; Kazak et al., 2004). SCCIP is a one-day, multi-family group intervention for adolescent cancer survivors and their mothers, fathers, and siblings. In a randomized clinical trial, SCCIP has been shown to reduce traumatic stress responses in survivors and family members.

In the past decade, interest has grown in the use of internet based interventions for children facing trauma, including medical events. Several randomized controlled trials of internet based interventions have shown promise in decreasing anxiety in recently injured children (Cox et al., 2010), decreasing traumatic stress in children with recent medical events (Kassam-Adams et al., 2016), and decreasing emotional difficulties, including PTSS symptoms, in long-term pediatric cancer survivors (Seitz et al. 2014).

There are effective treatments designed more generally for traumatic stress symptoms in children that are applicable for many ill or injured children.

Trauma-Focused Cognitive-Behavioral Therapy (TF-CBT) is a well-validated treatment approach for child traumatic stress that is likely to be useful for ill or injured children who have persistent traumatic stress symptoms.
Child and Family Traumatic Stress Intervention (CFTSI) focuses on two key risk factors (poor social or familial support, and poor coping skills in the aftermath of potentially traumatic events) with the primary goal of preventing the development of PTSD.

Find information on additional promising treatment approaches for child trauma at the National Child Traumatic Stress Network website.

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