Long Term Family Adjustment

Not surprisingly, parents of newly diagnosed childhood cancer patients are distressed. A meta-analysis of 29 studies found that compared with parents of healthy children, both mothers and fathers of children or adolescents recently diagnosed with cancer reported significantly more distress and problems with marital and family functioning, with mothers reporting more distress than fathers for up to 1 year after diagnosis. The mothers of the children with cancer also reported higher levels of family conflict than mothers of healthy children (Pai et al. 2007).

The stress of a child's cancer diagnosis and treatment leaves some parents feeling helpless, extremely fearful, or horrified, thus setting the stage for symptoms of acute stress and/or posttraumatic stress symptoms (Pai and Kazak 2006). Children whose parents are distressed are more likely to be distressed themselves (Robinson et al. 2007); however, parents appear to be at significantly higher risk for posttraumatic stress symptoms than their children (Kazak et al. 2004). A study of 214 parents of pediatric oncology patients found that 33% of the parents reported symptoms consistent with acute stress disorder at 1 week postdiagnosis, and half of those reported symptoms of posttraumatic stress disorder at 4 months postdiagnosis. Mothers were more likely to report symptoms than fathers (Poder et al. 2008). Another study of 201 parents using a different measure to assess acute and posttraumatic stress found that 51% of the mothers and 40% of the fathers reported symptoms meeting DSM-IV-TR (American Psychiatric Association 2000) criteria for acute stress disorder (Patiño-Fernández et al. 2008).

Stress symptoms may not necessarily resolve. Data suggest that parents of long-term cancer survivors are as psychologically symptomatic as those of recently diagnosed pediatric cancer patients, although the former are less angry and report less caregiving burden (Hardy et al. 2008). Parents with poor social support, adverse experiences with invasive procedures, trait anxiety, and negative beliefs about their child's illness and/or treatment have been found in most studies to be more likely to report posttraumatic stress symptoms, even many years after the completion of successful treatment (Rabineau et al. 2008). The Pediatric Psychosocial Preventative Health Model and the Medical Traumatic Stress Model are evidence-based treatment approaches designed specifically to address these issues (Kazak et al. 2007).

Brothers and sisters are also affected by the experience of a sibling's cancer diagnosis and treatment. They tend to feel left out, both by the family and by the medical team (Wilkins and Woodgate 2007). Little has been known about the long-term impact of childhood cancer diagnosis and treatment on siblings. The inclusion of brothers and sisters in the Childhood Cancer Survivor Study has provided the best information to date. Young adult siblings appear to do well in terms of HRQOL, education, general function, and emotional distress (Zebrack et al. 2007; Zeltzer et al. 2008).

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