Families
A commonly repeated idea in the cancer community is that cancer is a family disease; this concept is clearly supported by parents and siblings of children who are being treated for cancer. However, the effects of having a child or sibling with cancer are not uniform, either for all family members or at all points in the treatment process, and the literature reflects the variability of each family member's experience.
Parents
Despite significant improvements in long-term, disease-free survival in children treated for cancer,[1] cancer remains the second leading disease-related cause of death for children in the United States behind injury, congenital causes, and heart disease.[2] For more than half of children for whom frontline treatment fails, treatment using relapse and disease recurrence clinical trials (phase I and phase II) and unrelated hematopoietic stem cell transplantation is common.[3] For children, this...
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The diagnosis of childhood cancer represents the start of a period of substantial distress for parents, who report shock, emotional pain, difficulty coping with the necessary procedures performed on their child, rumination, and high levels of information seeking accompanied by a sense of lack of control.[1,2,3] One study found that all but one participant in a sample of 119 mothers and 52 fathers of children undergoing cancer treatment reported traumatic stress symptoms such as intrusive thoughts, physiologic arousal, and avoidance.[4] When parents of children undergoing treatment (n = 175) were compared with parents of children who had completed treatment (n = 238), symptoms of traumatic stress (intrusion, arousal) were reported more frequently by the parents during the acute phase of treatment than by the parents after treatment, though some parents reported these symptoms after treatment. Some demographic factors may play a role in the degree to which parents experienced significant stress that impairs function. Mothers were more likely to report higher levels of stress than were fathers, and parents with fewer years of formal education and lower socioeconomic status were more likely to experience traumatic stress at any time.[5]
Patterns of parental stress in families of children treated for cancer differ from those in families of children treated for other diseases. In one large study of 675 parents of children who were treated for cancer or diabetes or who were healthy, parents of children with cancer reported significantly higher levels of distress-as indicated in the specific areas of anxiety, physical and psychological distress, depression, and loneliness-than did parents of children with diabetes. Distress levels of parents of patients with cancer matched those in parents of patients with diabetes in measures of uncertainty, loss of control, self-esteem, disease-related fear, and sleep disturbances. Distress levels for parents of children with cancer decreased in intensity with longer time since diagnosis.[6]
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.
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