Diagnosis, disclosure, and informed consent: learning from parents of children with cancer.

PURPOSE: The aim of this study was to learn about and to describe retrospective perceptions of parents of the circumstances of their child's cancer diagnosis and of the informed consent process. METHODS: Professional moderators conducted three focus groups with 22 parents of children with cancer who were eligible for enrollment in a Children's Cancer Group clinical trial research protocol. Each focus group consisted of seven to nine parents and was audiotaped and transcribed. RESULTS: Parents' descriptions of the early phase of their child's illness yielded the following themes: dialogues regarding the diagnosis and treatment options occurred amidst tremendous stress; a sense of constraint and lack of control were common; parents experienced variable degrees of choice regarding their child's participation in a clinical trial; and parents provided suggestions about how to improve the informed consent process. Overall, parents did not verbalize distinctions between their understanding of their child's medical treatment, research participation, and other aspects of their child's cancer experience. CONCLUSIONS: Based on these results, the authors conclude with practical recommendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment options, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents from multiple sites.

Posttraumatic stress symptoms in children following orthopedic or traumatic brain injury.

Examined posttraumatic stress (PTS) symptoms in children following pediatric traumatic brain injury (TBI). Children (ages 6-12) with TBI (n = 81) and orthopedic injury (OI; n = 59) were assessed 6 and 12 months postinjury. Parents of children with severe TBI reported higher levels of child PTS symptoms than did parents of children with moderate TBI or OI at the 6- and 12-month follow-ups. Group differences in child-reported PTS symptoms emerged at the 12-month follow-up with higher symptom levels reported by children with severe TBI than by those with moderate TBI or OI. At both follow-ups, rates of clinically significant symptom levels were higher in the severe TBI group than in the moderate TBI or OI groups. The group differences in parent and child reports were significant even after taking ethnicity, social disadvantage, and age at injury into account. Parent and child reports of child PTS symptoms were related to family socioeconomic status. Implications for clinical intervention with children and families following pediatric TBI are discussed.

Health-related quality of life in childhood cancer: discrepancy in parent-child reports.

The purpose of our study was to describe reports of parents and of children with cancer on items taken from 4 domains of health-related quality of life (HRQL), bodily pain/distress, general health perceptions, physical functioning and limitations in role/social functioning as a result of physical health, and to examine whether differences in parent-child reports varied as a function of the child's health condition (cancer vs. healthy). Twenty-seven child-parent dyads with cancer and 27 child-parent dyads who were healthy (child ages 8 to 18 inclusive) completed measures of child HRQL [Child Health Questionnaire-Parent Form (CHQ-PF50) and Child Health Questionnaire (CHQ-CF87)] and demographic information at a scheduled out-patient general pediatric or pediatric oncology clinic appointment. Sixteen items included on both the CHQ-CF87 and CHQ-PF50 were examined to compare parent and child reports of child HRQL. As hypothesized, greater discrepancies were evident in the reports of parents of children with cancer than parents of children who are healthy [F(16,31) = 3.98, p < 0.0001]. Statistically significant discrepancies emerged in parent and child responses on 50% of the items in the sample of children with cancer, with parents reporting that their children experience more limitations in their lives than did the children themselves. In the healthy group, statistically significant discrepancies emerged on only 1 of the 16 items (6.3%).