Children with cancer and their family members experience childhood cancer as a highly distressing event. When a child is diagnosed with cancer, it is quickly understood that he or she will die without treatment. Current treatments, while accompanied by high overall success rates (Reis et al., 2008
), are very intensive. Typically, treatment protocols require hospitalization, painful and invasive diagnostic and monitoring procedures, and surgery, chemotherapy, and/or radiation therapy. Side effects of the treatment and possible complications (e.g., nausea, loss of appetite, severe fatigue, mouth sores, rashes, infections) may make the child feel and appear more ill during treatment than they were prior to treatment (Keene, 1999
). Even if the child does well and establishes remission quickly, treatment is rarely routine and may involve frequent transitions and periods of uncertainty regarding long-term prognosis. Even after remission is achieved, fears about relapse persist.
While most children and families adjust well to cancer over time, an important subset of survivors of childhood cancer continue to experience cancer-related distress long after cancer treatment ends (Brown, Madan-Swain & Lambert, 2003
; Kazak et al., 2004
). A posttraumatic stress model provides a useful framework for understanding the nature of this long-term distress (Kazak et al., 2006
). This model recognizes the life threat inherent in cancer and explains symptoms such as intrusive thoughts, physiological arousal, hypervigilance and avoidance. Most studies find that between 5 and 10% of adolescent survivors of childhood cancer qualify for a diagnosis of Posttraumatic Stress Disorder (Butler, Rizzi & Handwerger, 1996
; Erickson & Steiner, 2002
; Kazak et al., 2004
); however, rates of sub-clinical posttraumatic stress symptoms are higher (Kazak et al., 1997
; Langeveld, Grootenhuis, Voûte, De Haan, & Van Den Bos, 2004
Although only a subset of adolescents experience persistent cancer-related distress, it is important to determine what factors may be associated with this severe disruption of adjustment. Previous research has demonstrated that greater levels of general anxiety, a history of other stressful experiences, and subjective perceptions of greater life threat and more severe treatment intensity are predictive of posttraumatic stress symptomatology in samples of childhood cancer survivors (e.g., Stuber et al., 1997
). However, time elapsed since treatment and objective measures of medical severity are usually not predictive of persistent posttraumatic stress symptoms (e.g., Taieb, Moro, Baubet, Revah-Levy, & Flament, 2003
Family factors may also predict posttraumatic reactions in adolescent survivors of cancer. It is widely recognized that a child's response to a traumatic event is greatly influenced by family context (Kiser & Black, 2005
). In fact, some evidence suggests that disruptions in family functioning following a traumatic event predict the development of posttraumatic stress better than characteristics of the traumatic event itself, such as extent of loss or duration of the event (Pfefferbaum, 1997
The experience of childhood cancer poses many challenges to the functioning of families (see Alderfer & Kazak, 2006
for a review). Upon learning of the diagnosis, families may pull together emotionally to support one another and mobilize for the challenges of treatment. As treatment starts the family may need to renegotiate roles and responsibilities to care for the child with cancer at the hospital or attend outpatient appointments while ensuring that important responsibilities and routines are not abandoned. The child with cancer may become the center of the family. After treatment ends the patterns developed within the family may persist, even if no longer appropriate for the successful development of individual family members.
Research supports many of these theoretically-predicted changes in family functioning. Around the time of diagnosis families pull closer together (e.g., McGrath, 2001
; Varni, Katz, Colegrove & Dolgin, 1996
). The time and physical demands of treatment prompt strain and disorganization; Horwitz and Kazak (1989)
found that families of children with cancer 6 to 41 months post-diagnosis were more likely to fall into the chaotic and rigid ranges of flexibility when compared to community controls. Families who have completed treatment have been found to be better functioning than those on treatment (Brown et al., 2003
; Streisand, Kazak & Tercyak, 2003
). However, even off-treatment, there seems to be some long-term disruptions. For example, Cohen and colleagues (Cohen, Friedrich, Jaworski, Copeland, & Pendergrass, 1994
) found that significantly more families of children with cancer up to 4 years post-diagnosis scored in the enmeshed range when compared to norms (21% vs. 14%).
Research specifically concerning family functioning and posttraumatic reactions in survivors of childhood cancer is scant. The few studies that exist provide conflicting results. Barakat and colleagues (Barakat, Kazak, Meadows, Casey, Meeske & Stuber, 1997
) investigated factors predicting self-reported posttraumatic stress (PTS) reactions in 8 to 20 year old survivors of childhood cancer and found that mother-reported family adaptability, cohesion, and family satisfaction were not significant predictors of child PTS. Similarly, Brown and colleagues (2003)
in a study of 12 to 23 year old childhood cancer survivors found adolescent-reported family support and conflict to be unrelated to their self-reported PTS symptoms. Pelcovitz and colleagues (Pelcovitz, Libov, Mandel, Kaplan, Weinblatt & Septimus, 1998
) used adolescent-reports of family functioning and a structured clinical interview to assess PTSD in survivors of childhood cancer (13 to over 20 years of age) and found that those meeting criteria for lifetime PTSD reported more chaos within their families than those who did not have a history of PTSD. Finally, Ozono and colleagues (Ozono, Saeki, Mantani, Ogata, Okamura & Yamawaki, 2007
) in an investigation of 12 to 20 year old survivors of childhood cancer found that those reporting PTS symptoms in the severe range also reported poorer family roles and affective responsiveness within their families.
In summary while it is widely recognized in the general trauma literature that a child's response to a traumatic event is greatly influenced by family context (Kiser & Black, 2005
), the evidence linking family functioning and cancer-related PTSD in adolescent survivors is weak. Studies isolating adolescents with definitive adjustment problems (e.g., severe PTS or PTSD) seem more likely to find associations with family functioning compared to studies investigating PTS as a continuous variable, suggesting a possible threshold effect. However, in the past investigations finding significant linkages, the adolescent was the only reporter of family functioning. The presence of severe PTS or PTSD might alter or bias perceptions of family functioning. Furthermore, all of these studies examined broad age ranges without attention to possible developmental variation in family functioning or possible developmental differences in the relationship between family functioning and PTS.
The purpose of this investigation was to examine the functioning of families with an adolescent cancer survivor and to explore relationships between family functioning and adolescent cancer-related PTSD. Based upon past findings, we decided to compare and contrast adolescents with and without a history of cancer-related PTSD as opposed to examining PTS as a continuous variable. To improve upon past research, we utilized multiple informants of family functioning and considered the developmental level of the adolescent in our analyses. We also investigated the relative risk of adolescent cancer-related PTSD when the family is poorly functioning. We hypothesized that adolescent survivors with PTSD and their parents would report poorer family functioning than families without adolescent cancer-related PTSD and that adolescents with PTSD would be more likely to come from poorly functioning families.