Purpose: Obtaining an accurate understanding of a child’s cancer prognosis may allow for informed parent decision making, as well as an ability to balance aggressive treatment with maintaining the child’s quality of life throughout the disease course. Research has shown that parents tend to overestimate their child’s cancer prognosis relative to physicians. The current study examined an integrated model that included parent adjustment, coping, and health literacy variables for its ability to account for differences in the accuracy of parents’ understanding of their child’s cancer prognosis.
Methods: Seventy-seven mothers and forty-two fathers of children with cancer completed questionnaires regarding their own adjustment, coping, and sources of medical information. Physicians reported on the content of their communication with parents regarding the child’s prognosis. Both parents and physicians estimated the child’s chance of 5-year survival using a visual analogue scale. Assessments occurred within 3-8 weeks of a child’s new diagnosis or relapse of cancer. Mothers were on average 36.89 years old (SD = 7.57), and 92% (n = 71) were Caucasian. Sixty-eight percent (n = 52) were married, and mean years of education was 14.90 (SD = 3.53). Fathers were on average 40.45 years old (SD = 7.01), and 98% (n = 41) were Caucasian. Eighty-three percent (n = 35) were married, and mean years of education was 15.26 (SD = 4.04). Children were on average 10.77 years old (SD = 3.88); the majority were male (52%; n = 40) and Caucasian (90%; n = 69). Diagnoses included leukemias (26%; n = 20), lymphomas (36%; n = 28), brain tumors (12%; n = 9), and other solid tumors (26%; n = 20).
Results: Both mothers and fathers reported a more favorable prognosis for their child than physicians. Agreement between physician and mother prognosis estimates was moderated by mothers’ symptoms of depression and anxiety. Agreement between physician and father prognosis estimates was moderated by fathers’ use of secondary and disengagement coping, as well as father age and sources of medical information.
Conclusion: Results provide partial support for an integrated model of parent prognosis literacy that highlights various coping, adjustment, and health literacy variables as important factors that play a role in mothers’ or fathers’ understanding of their child’s cancer prognosis. In addition, findings indicate that the specific factors involved in influencing prognosis understanding vary between parents. Additional research on these and other factors is needed to assist in developing clinical interventions aimed at improving informed parental knowledge during a child’s cancer treatment.