Faculty Bibliography

PURPOSE OF REVIEW: In the advanced stages of illness, families with dependent children experience disruption across all dimensions of family life. The need for family support during palliative care is well recognized, yet little is understood about how parents and their children navigate these difficult circumstances. This review summarizes the current body of research on parenting challenges in advanced cancer. RECENT FINDINGS: To date, the study of parental cancer has focused predominantly on the early stages of disease and its impact on children and adolescents. Less is known about how families with minor children prepare for parental loss. Evidence suggests that having dependent children influences parents' treatment decisions at the end of life, and that a central concern for children and parents is optimizing time spent together. Parents may feel an urgency to engage in accelerated parenting, and maintaining normalcy remains a consistent theme for the ill and healthy parent alike. There is a growing evidence base affirming the importance of responsive communication prior to death. SUMMARY: Advancing knowledge about the parenting experience at the end of life is critical for ensuring effective support to the entire family, as it accommodates and prepares for the loss of a vital member.

BACKGROUND: Due to the devastating late effects associated with cranial irradiation in young children with central nervous system (CNS) tumors, treatment for these patients has evolved to include the use of intensive chemotherapy to either avoid or postpone irradiation. While survival outcomes have improved, late effects data in survivors treated on such regimens are needed. OBJECTIVE: This multi-institutional study comprehensively describes late effects in survivors treated on the Head Start I/II protocols. METHODS: Survivors of CNS tumors treated on Head Start I/II protocols were enrolled. Late effects data were collected using a validated parent-report questionnaire. Social, emotional, and behavioral functioning and quality of life were assessed using parent-report on the BASC-2 and CHQ-PF50 questionnaires. RESULTS: Twenty-one survivors (medulloblastoma = 13, sPNET = 4, ATRT = 1, ependymoma = 3) were enrolled. Ten (48%) were irradiation-free. Late effects (frequency; median time of onset since diagnosis) included >/= grade III hearing loss (67%; 3.9 years), vision (67%; 4.1 years), hypothyroidism (33%; 4 years), growth hormone (GH) deficiency (48%; 4.7 years), dental (52%; 7.1 years), and no cases of secondary leukemia. Irradiation-free (vs. irradiated) survivors reported low rates of hypothyroidism (0/10 vs. 7/11; P = 0.004) and GH deficiency (2/10 vs. 8/11; P = 0.03). The BASC-2 and CHQPF-50 mean composite scores were within average ranges relative to healthy comparison norms. Neither age at diagnosis nor irradiation was associated with these scores. CONCLUSIONS: Irradiation-free Head Start survivors have lower risk of hypothyroidism and GH deficiency. Secondary leukemias are not reported. With extended follow-up, survivors demonstrate quality of life, social, emotional, and behavioral functioning within average ranges.

OBJECTIVE: To assess self-perceptions of social behavior among children treated for a brain tumor and comparison children. To investigate group differences in the accuracy of children's self-perceptions as measured by discrepancies between self and peer reports of social behavior and to understand if these phenomena differ by gender. METHOD: Self and peer reports of social behavior were obtained in the classrooms of 116 children who were treated for an intracranial tumor. Social behaviors were assessed using the Revised Class Play, which generates indices for 5 behavioral subscales: Leadership-popularity, Prosocial, Aggressive-disruptive, Sensitive-isolated, and Victimization. A child matched for gender, race, and age was selected from each survivor's classroom to serve as a comparison. Abbreviated IQ scores were obtained in participants' homes. RESULTS: Relative to comparison children, those who had undergone treatment for a brain tumor overestimated their level of Leadership-popularity and underestimated levels of Sensitive-isolated behaviors and Victimization by peers. Female survivors were more likely than male survivors to underestimate Sensitive-isolated behaviors and Victimization. CONCLUSION: Following treatment for a brain tumor, children (particularly girls) may be more likely than healthy children to underestimate peer relationship difficulties. These discrepancies should be considered when obtaining self-report from survivors and developing interventions to improve social functioning.

Significant theoretical and research efforts have addressed children's self-perceptions. However, questions remain about the factors that affect variability in self-perceptions both between children and across development. The present study examined social self-perceptions and self-perception accuracy as defined by concordance between self and peer report of positive and negative social behaviors. Accuracy was examined as a function of grade level (grades 2-8) and gender within a broad sample (n=1883). Younger children reported more positive self-perceptions, but concordance with peers was stronger at higher grade levels. Although boys and girls differed in their self-perceptions, concordance did not vary as a function of gender or whether the peer reference group was composed of same- or opposite-gender peers.

OBJECTIVE: To examine the extent to which stress, coping, and temperament accounted for variability in adjustment among children with cancer. METHODS: Seventy-five mothers of children with cancer (ages 5-17) completed questionnaires regarding their child's cancer-related stress; coping; temperament characteristics including positive affect (PA), negative affect (NA), and effortful control (EC); and symptoms of anxiety and depression. Assessments occurred within one year of initial diagnosis or relapse (M = 5.74 months; SD = 4.72). RESULTS: Cancer-related stress was positively associated with symptoms of depression in children. NA was positively associated with symptoms of anxiety and depression. Primary control coping moderated the association between NA and depression, and primary and secondary control coping mediated this association. CONCLUSION: Results partially support the utility of an integrated model including cancer-related stress, coping, and NA in identifying children at risk for internalizing symptoms during treatment. Additional research is needed to inform interventions for this population.