A systematic and conceptual review of posttraumatic stress in childhood cancer survivors and their parents
Introduction
No longer is childhood cancer considered a fatal illness. Advances in treatment technologies have ensured ever-increasing periods of disease-free survival (Brown et al., 2003, Moore, 2005). However, an equally rapid growth of research suggests that the deleterious effects of cancer and subsequent “cure” extend beyond physical sequelae. Childhood cancer survivors have repeatedly been found to be at increased risk of developing internalizing and externalizing difficulties as well as social problems (Fuemmeler, Elkin, & Mullins, 2002). In recent years a growing body of literature has highlighted presence of trauma-related symptomatology, such as avoidant behaviors, intrusive thoughts and heightened arousability in cancer survivors (see Kangas et al., 2002, Smith et al., 1999 for reviews). Furthermore, the parents of these children have been found to report comparatively higher rates of trauma-related symptomatology (Goldenberg libov et al., 2002, Manne et al., 2000, Manne et al., 2002, Pelcovitz et al., 1996). The profile and severity of these symptoms are comparable to those exhibited by individuals diagnosed with posttraumatic stress disorder (PTSD) (Smith et al., 1999).
Accordingly, the Diagnostic Statistical Manual of Mental Disorders, 4th edition (DSM-IV; American Psychological Association [APA], 1994) modified and broadened its taxonomy of PTSD. This resulted in the inclusion of both the traumatic event itself and the experience of the person involved in the event. Specifically, being ‘diagnosed with a life-threatening illness’ or ‘learning that one's child’ (APA, 1994, p. 426) has such an illness became a qualifying stressful event. Henceforth, increasing attention has focused on the applicability and nature of cancer specific factors in the development and maintenance of both PTSD and PTSS. Correspondingly, growing recognition and documentation of PTSD in cancer patients by psycho-oncology researchers and clinicians has ensued (Kangas et al., 2002). Furthermore, increasing attention has focused upon assessing posttraumatic stress symptoms (PTSS), which provides a continuous measure of posttraumatic stress reactions and risk of PTSD diagnosis.
As an extensive and ever-expanding body of literature exists in relation to PTSD as well as the neurocognitive and psychosocial sequelae of cancer, this review aims to restrict its examination to the documentation of PTSD and PTSS in childhood cancer survivors1 and their parents. Specifically, the following issues will be reviewed: (i) the prevalence and nature of childhood cancer as well as the associated physical and psychosocial sequelae; (ii) the prevalence and diagnostic features of PTSD in the general population including associated risk factors; (iii) the applicability of PTSD diagnosis to childhood cancer; (iv) the current empirical research base on PTSD and PTSS in childhood cancer survivors and their parents; and (v) the extent to which the experience of childhood cancer can be conceptualized within current theories of PTSD. Finally, several recommendations for future research studies are delineated.
Section snippets
Prevalence of childhood cancer
In the UK, approximately 1400 cases of cancer were diagnosed in children (0–14 years) and 1600 in adolescents and young adults (15–24) in 2001 (Office for National Statistics, Cancer Statistics registrations, 2004). In the US, the American Cancer Society estimated that 9100 new cases of children cancer (0–14 years) were diagnosed in 2002 (Cancer Facts & Figures, 2002). The risk of an individual child in the UK being diagnosed with cancer before the age of 15 is approximately 1 in 500, with a
Prevalence of PTSD in the general population
Estimates of lifetime prevalence of PTSD in the general adult population have been reported to range from 1% to 14% (APA, 1994). The Epidemiologic Catchment Area (ECA) studies revealed lifetime prevalence of PTSD to be 1% in the general adult US population (Helzer, Robins, & McEvoy, 1987). Davidson, Hughes, Blazer, and George, (1991) found a lifetime prevalence of 1.3% in a large adult community sample. The National Comorbidity Survey reported a lifetime prevalence of 7.8% (Kessler, Sonnega,
Application of PTSD and PTSS to childhood cancer
Recognition and utilization of the concepts of PTSD and PTSS in childhood cancer survivors and their parents clearly bestows a number of advantages. Firstly, children and parents who exhibit such symptomatic profiles may be able to understand these responses as recognizable and treatable reactions to traumatic experiences. Use of diagnostic taxonomies such as PTSD also enables rapid and succinct communication of potentially very complex problems. Furthermore, they assist clinicians in the
Systematic review of cancer-related PTSD and PTSS literature
Recently, two excellent reviews of PTSD and PTSS in adults directly affected by cancer (Kangas et al., 2002) and general medical illnesses (Tedstone & Tarrier, 2003) have been published. Kangas et al. (2002) highlighted a number of issues pertinent to the assessment and treatment of cancer-related PTSD as well as advocating the need for a stronger empirical base to guide clinical management of PTSD in cancer patients. Tedstone and Tarrier (2003) documented that, irrespective of medical illness,
Theories of PTSD applied to childhood cancer survivors and their parents
A large number of theories have attempted to elaborate the mechanisms thought to underlie the etiology and maintenance of PTSD. While each has offered important contributions to the field of posttraumatic stress this review has selected four theories through which to assimilate the current findings of cancer-related PTSD and PTSS in childhood cancer survivors and their parents: (i) stress response model; (ii) fear network model of emotional processing; (iii) dual processing theory; (iv)
Directions for future research
What is clear from the current literature on PTSD and PTSS in childhood cancer survivors and their parents is that findings are inconsistent. This prevents establishment of a coherent body of knowledge from which to inform and guide clinical assessments and interventions. Future research needs to identify specific mechanisms which both precipitate and maintain PTSD and PTSS in this clinical population. This review has highlighted a number of areas that warrant further investigation: (i)
Summary
The experience of childhood cancer is a highly distressing and chronic life event which extends beyond the survivor to the entire family system. Children must endure a number of lengthy and aversive diagnostic procedures and treatments, frequently accompanied by short and long-term side effects. Accordingly, the construct of posttraumatic stress has proved a useful framework for the conceptualization of the associated psychological sequelae in childhood cancer survivors and their parents.
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