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Pediatric Supportive Care (PDQ®): Supportive care - Health Professional Information [NCI] - Families

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At the same time that they are dealing with increased distress, parents of children with cancer report wanting to remain strong and optimistic for their children.[7] One study found no differences in multiple measures of family distress and psychological functioning between families of children with cancer and families with healthy children.[8]

Several factors appear to be predictive of long-term parental adjustment. Better short- and long-term adjustment is experienced by parents who:[9,10,11]

  • Are employed.
  • Have social support from family, friends, and health care team members.
  • Experience lower levels of parenting stress.
  • View their children's quality of life positively.
  • Have positive expectations for treatment outcome.

Factors associated with poorer parental adjustment include the following:[12,13]

  • Low parental expectations for positive outcomes.
  • Feelings of helplessness, uncertainty, and anxiety.
  • Low levels of social support.
  • Negative interactions with health care team members.
  • Negative assessment of the child's quality of life.

Race [14] and parent gender [15] may affect the intensity of the effect of these factors on parental functioning. In rare circumstances, the stress of coping with pain, adverse side effects, lack of control or understanding of information or outcomes, and conflicts with health care professionals may lead parents to drop out of cancer treatment for their children.[16]

Most studies suggest that over time, maternal affective distress and perceived stress have been shown to decline, but the perceived burden of caring for a child with cancer remains stable, as do positive characteristics such as parental control, nurturance, and responsiveness.[14] This pattern may be related to the high levels of social support provided at the time of diagnosis, with a gradual decrease in the quantity of support but stable perceived quality of support across all phases of cancer treatment.[15] In general, parents are seen as resilient,[12][Level of evidence: II] but parental loneliness and continued uncertainty may last far beyond the treatment phase if there are ongoing late effects of treatment for the child.[17][Level of evidence: II] A few studies have found that a substantial number of parents (30%–36%) of long-term cancer survivors may experience intense long-term stress-related symptoms that fall below the threshold for a diagnosis of post-traumatic stress disorder (PTSD) but that are nevertheless a significant problem for these parents.[18,19][Level of evidence: II] Symptoms were severe enough that in 20% of families, at least one parent met the criteria for a diagnosis of PTSD.[19]

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