Competence in Caregivers of Survivors of Childhood Brain Tumors Janet A. Deatrick, PhD, FAAN Professor and Co-Director, Center for Health Equity Research University of Pennsylvania School of Nursing 1 2 Background These AYA BT survivors experience moderate to severe issues related to the late effects of the tumor and treatment o Personal/developmental o Health o Institutional 3 Background Families are also experiencing many issues o Life before the brain tumor and after the brain tumor- As they constantly adjust to changes in a previously normal/ typical child and family brought about by the brain tumor. o Ongoing loss- As they experience reminders of their ongoing losses as the survivors develop differently than their peers. 4 Background Mother/caregiver continue to function as primary caregivers. Evidence says that o The demands that they experience compound their usual parental responsibilities and over the long haul can threaten their perceived competence (mastery). o Their competence is important because of its relationship to both survivor and caregiver outcomes/functioning. 5 Method Hypothesis o Caregiver health, survivor health, and family functioning directly contribute to caregiver demands that, in turn, contribute to caregiver competence 6 7 Method Approved by the IRB. Data collected via Cross sectional telephone survey of mothers whose survivor lives at least part time at home using structured self-report questionnaires. Used Structural Equation Modeling to test the hypotheses. 8 Caregiver Demographic Characteristics Caregivers (n=186) Aged (mean = 51.6 6.4) White (88.7%) and non-Hispanic (96%) Education: attended/graduated high school (29%) or college (29%) Employed full time (47.3%) Married or live with a partner (79%) 9 Survivor Demographic Characteristics Survivors(n=186) Aged m = 20.5 years 5.3 Years since diagnosis 6.4 Male (56.5%) No School or work (17.7%) 10 Tumor Location and Histology Tumor Location: Posterior Fossa/cerebellar (50.5%) Histology: Low grade glioma (50.5%); PNET/medulloblastoma (27.4%) 11 Clinical Characteristics Treatment intensity o Minimal: Resection only 33% o Average: Focal radiation and non-intensive chemo 30% o Moderate: Moderate chemo focal rad but no CSR 10% o Intensive: CSR mod non-intensive chemo or HDC with SCR 24% o Most intensive: CSR and intensive chemo with SCR 3% Medical Sequelae o Minimal to no limitation in activity 17% o Mild restriction of daily living 26% o Moderate restrictions to daily living 47 % o Severe restriction of daily living; life threatening 10% 12 Results 13 Results The final SEM model suggests that survivor health and family functioning directly predicts caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. Caregiver health and survivor health are moderately correlated. The model showed adequate fit (CF I= 0.905, TFI = and RMSEA = 0.081). All the paths are significant with p