Journal of Pediatric Psychology Advance Access published online on April 25, 2008
Journal of Pediatric Psychology, doi:10.1093/jpepsy/jsn042
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Commentary: Adopting to a Broad Perspective on Posttraumatic Stress Disorders, Childhood Medical Illness and Injury
Fox Chase Cancer Center
All correspondence concerning this article should be addressed to Dr Sharon Manne, PhD, Fox Chase Cancer Center, 510 Township Line Road, 1st Floor, Cheltenham, PA 19012, USA. E-mail: sl_manne{at}fccc.edu
In their study of posttraumatic stress symptoms (PTSS) in parents of children with cancer, Jurbergs and colleagues (2007) compared a group of parents of children diagnosed with cancer with a group of parents of physically healthy children. Parents of children across a range of treatment phases, including those on treatment, and parents of children who had had a cancer recurrence, were studied. Parents were administered a widely used self-report measure of traumatic stress symptoms, the Impact of Events Scale-Revised (Horowitz, Wilner, & Alvarez, 1979
), with parents of healthy children completing the survey considering the most major stressor they have experienced. The results indicated that PTSS increased in the first 18 months after diagnosis and evidenced a declining trend after that, particularly beyond 5 years postdiagnosis. One of the most interesting findings of this study was the comparison of parents of children who had relapsed with parents of children who were on therapy. Parents of children who relapsed evidenced the highest levels of PTSS and parents of children on treatment with no relapse history and parents of healthy children reported similar, intermediate levels of PTSS. The authors suggest that the first diagnosis may leave parents vulnerable to developing PTSS when their child is diagnosed with a relapse or recurrence.
In the second study by Landolt and colleagues (2007), children who had acquired severe accidental burns were evaluated for posttraumatic stress disorder (PTSD) and the association between PTSD and quality of life outcomes was assessed. Almost 19% of the children met criteria for PTSD, and more than half of the sample met the criterion for the PTSD re-experiencing cluster. Surprisingly, health-related quality of life was not lower when the entire sample was considered; however, children with more PTSD symptoms reported poorer physical, motor, cognitive, and emotional functioning.
These two studies illustrate key issues in the consideration of whether childhood illness and medical injury is a viable framework for studying PTSD and PTSS. The question that has been the subject of the vast majority of studies is whether childhood illness results in PTSD among both children and their family members, particularly parents. Although childhood illness qualifies as a traumatic stressor, both for the child who undergoes the experience and for the parent who witnesses their child undergo this experience, there has been some question as to whether medical illnesses (e.g., cancer, diabetes, asthma, epilepsy) and events that result in significant long-term medical problems (e.g., burns, serious accidents) result in sufficiently high rates of posttraumatic stress for either parent or child (Phipps, Long, Hudson, & Rai, 2005). There have been different approaches to evaluating this issue, which have ranged from documenting the prevalence of PTSD in the population of interest and comparing these rates with previous studies of the same population (Horsch et al., 2007; Manne et al., 2002; Rourke, Hobbie, Schwartz, & Kazak, 2007), to documenting and comparing PTSD rates to norms from the general population (Landolt et al., 2005), to gathering a healthy control sample for purposes of comparison (Barakat et al., 1997; Jurbergs et al., 2007).
These approaches have yielded widely variable results. Studies of children reveal prevalence rates ranging from 12% in children seriously injured in accidents (Meiser-Stedman, Yule, Smith, Glucksman, & Dalgleish, 2005), 16% in adolescent organ transplant recipients (Mintzer et al., 2005), 20% among adolescents with life-threatening asthma (Kean et al., 2006), and between 5% (Kazak et al., 1997) and 10% (Butler, Rizzi, & Handwerger, 1996) among children surviving cancer, 16–22% among young adult cancer survivors (Meeske et al., 2001; Rourke et al., 2007), and nearly 30% of children who have undergone surgery for congenital heart disease (Toren & Horesh, 2007).
When comparisons are made between rates in these populations and other samples, the results have been similarly inconsistent. Some studies have illustrated that children report lower levels of PTSD than children undergoing other traumatic experiences (Stoppelbein, Greening, & Elkin, 2006), some studies do not reveal differences between these children and comparison peers (Gerhardt et al., 2007), and some studies suggest rates of PTSD are higher among children with cancer than comparison groups (Brown, Madan-Swain, & Lambert, 2003; Schwartz & Drotar, 2006).
Rates among parents have shown similar variability but are typically higher than among children. Recent work by Landolt and colleagues (2005) found prevalence rates of PTSD among parents of children recently diagnosed with diabetes of 20.4% 1 year after diagnosis. Iseri and colleagues (Iseri, Ozten, & Aker, 2006) found PTSD among 32% of caregivers of children with epilepsy, and Farley and colleagues (2007) recently reported 19% PTSD prevalence among parents of children who underwent heart transplantation. Lower prevalence rates have been reported among parents of children treated for cancer (13.7%, Kazak et al., 2004) and among mothers of children undergoing stem cell transplantation (11.7%; Manne et al., 2004).
What can be concluded from these widely variable results? As has been aptly noted by Jurbergs and colleagues (2007) "simply having a child with cancer does not lead to increased PTSS in parents of children with cancer." Indeed, PTSD is not a universal side-effect of childhood medical illness or injury. With the possible exception of severe pediatric burns, it is a subset of children and parents who develop persistent PTSD after a childhood illness or medical event. A more fruitful approach to understanding PTSD among children who have undergone a serious medical event and their family members will be to take a broad, cross-situational perspective of this issue, rather than focus on debating the prevalence of PTSD. This approach will facilitate the study of PTSD in a number of ways; I will outline two in this commentary. There are some excellent examples of scientific gains that may occur by adopting this broad, cross-situational perspective.
The first advantage of adopting a broad perspective is that it may result in the identification of unique and common characteristics of childhood illness or injury, the cognitive, psychological, and biological characteristics of the child and parents, and characteristics of the family's social context that place children and parents at risk for the development of persistent PTSD or play a protective role by reducing risk for persistent problems. I review each topic below.
If we look across the literature at the unique and common characteristics of the childhood illness or injury that may predict PTSD, PTSD may be more likely to develop among children who have persistent, unmanaged pain (Saxe et al., 2001; Stoddard et al., 2006) or medical complications (Mintzer et al., 2005), among children who have sustained significant bodily disfigurement, particularly facial disfigurement (Rusch et al., 2000) and their parents (Schrieber & Galai-Gat, 1993), among children who sustain cognitive impairment (Vasa et al., 2004), among children and families who experience a life-threatening episode during the course of the illness (e.g., life threatening asthma episode or seizure; Kean et al., 2006) or a recurrence of the illness (e.g., cancer relapse; Jurbergs et al., 2007).
If we consider cognitive characteristics of the child, a key variable is the current perception of threat posed by the illness/injury. Across multiple pediatric medical conditions, PTSD is more likely to develop if the child presently perceives the illness as life-threatening (Barakat et al., 1997; Rourke et al., 2007), perceives the treatment as more intense (Barakat et al., 1997; Rourke et al., 2007), perceives higher risk for a recurrence of the illness (Stoppelbein, Greening, & Elkin, 2006), and perceives that the medical complications of the illness are more severe (Copeland et al., 2007). If we consider psychological characteristics of the child, an important variable is the presence of pretrauma psychological problems such as trait anxiety (Ozono et al., 2007) and/or preexisting anxiety disorder (Muris et al., 2003). The child's emotional responses during the illness or during the immediate postinjury phase may also play a role. Indeed, a number of studies have suggested that children (Bryant et al., 2007; Di Gallo et al., 1997) and parents (Manne et al., 2004; Ribi et al., in press) who exhibit significant distress and/or traumatic symptomatology during the medical illness experience are more likely to develop later PTSD.
Finally, there has been little attention paid to biological and genetic markers as vulnerability factors in the pediatric PTSD literature. Biological theories of PTSD postulate that initial biological responses to the traumatic event, which can include physiological arousal indices such as increased heart rate (De Young, Kenardy, & Spence, 2007; Stoddard et al., 2006) and high epinephrine and cortisol levels (Delahanty et al., 2005; Glover & Poland, 2002) play a strong role in the development of PTSD in children. Recent studies suggest that genes and genetic polymorphisms involved in dopamine and serotonin regulation may also make some children vulnerable to developing PTSD after medical and nonmedical traumatic events (Koenen et al., 2005; Lu et al., in press). Similar risk factors may be present for children across medical illnesses and their family members and represent a fruitful avenue for future research.
In terms of family contextual factors, the primary factor that has been consistently associated with PTSD is family environment and support. Family support may play a protective role, whereas family conflict is likely a risk factor. Some cross-sectional studies have reported that lower levels of family functioning and perceived social support from family members predict PTSS among parents of childhood cancer survivors (Kazak et al., 1999). The few longitudinal studies that have evaluated family environment as a predictor of PTSD have suggested that family conflict may be more predictive than family support (Manne et al., 2002). More longitudinal research, particularly among children and parents experiencing other medical illnesses and injuries, will determine specific aspects of the family context that contribute to child and parent PTSD (La Greca et al., 1996).
The second advantage of adopting broad perspective is that it may further enrich our understanding of sub-clinical PTSS syndromes and link PTSD and sub-clinical PTSD with other psychological problems and late effects of medical illness. While frank PTSD may not be common, it is clear that sub-syndromal symptoms (PTSS) are more prevalent among children dealing with medical illness and injury and their parents. By examining sub-clinical PTSS syndromes and moving beyond a focus on PTSD as a diagnosis, investigators can begin to investigate the link between PTSS/PTSD with other psychological problems. The Landolt and colleagues’ (2007) study is one a step in this direction in that their findings suggest posttraumatic stress responses may have far-reaching consequences in terms of quality of life. A broader perspective on the effects of childhood illness and injury will also facilitate the investigation of positive aspects of traumatic experiences such as the ability to find benefit in the experience and enhance resilience (Barakat et al., 2006). Adopting a broader perspective may also facilitate the understanding of the late psychological effects of childhood diseases. For example, Recklitis and colleagues (Recklitis, Lockwood, Rothwell, & Diller, 2008) reported that 12.83% of a sample of young adult survivors of childhood cancer reported suicidality, but only a small subset evidenced depression. Current physical symptoms associated with cancer late effects predicted suicidality. Paradigms of psychological effects of life-threatening illness may need to be expanded beyond PTSD to look at other psychological issues. Late medical effects may not only serve as cues for PTSD or PTSS, but may also function as cues and reminders of mortality, may limit survivors from setting life goals and adopting a forward-looking perspective, and may ultimately compromise quality of life in ways that are unique from PTSD.
In summary, I believe it is important to move beyond debating the prevalence of PTSD as a method of determining whether PTSD is a viable framework for understanding emotional responses to childhood illness and injury. It is clear that a subset of families report significant stress responses and that PTSD and sub-syndromal symptoms reduce quality of life. As a field, it may benefit us to increase our awareness of the broader psychological and biological literature on PTSD in children and parents, to identify commonalities across childhood illnesses and injury, and to integrate the understanding of the link between long-term physical and psychological effects of childhood cancer. Through this broad, integrative, translational perspective we will advance our knowledge about PTSS and PTSD and develop more effective interventions for children and their families.
Conflicts of interest: None declared.
Received February 11, 2008; revision received March 31, 2008; accepted April 3, 2008
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