Caregiving demands: Survivors of Childhood Brain Tumors Janet A. Deatrick, PhD, FAAN Lamia Barakat, PhD; Michael Fisher, MD; Jill P. Ginsberg, MD; Thomas Hardie, EdD, APRN, BCNP; Wendy Hobbie, MSN, CRNP, FAAN

Survivors Late effects (including neurodevelopmental late effects) from tumor and treatment – Impede functional status – Create difficulty managing health needs – Delay normal developmental milestones Finishing high school, obtaining a bachelor’s degree, making friends, marrying, and staying married May be unable to function independently

Caregivers Create demands on caregivers which increase as the survivors fail to achieve developmental milestones In the US, healthcare agencies and communities focus minimal resources on the needs of the caregivers

Aim To explore caregiver, survivor, and family factors that may predict caregiving demands o Caregiving demands are subjective burdens of caregiving including changes in social functioning, well being, and health resulting from providing care. o Positive->negative and negative->positive

Methods Design: Cross sectional telephone survey of 200 mothers who are caregivers in an ongoing study of brain tumor survivors – Survivor criteria: years old 5 years from diagnosis 2 years from treatment Live in the caregivers’ household

Measures Predictors – Caregiver factors Mental and physical health (State-Trait Anxiety Inventory, General Functioning [Brief Symptom Inventory-BSI] and Health Perception [SF-36 general health scale]) – Survivor factors Physical and emotional quality of life (Pediatric Oncology Quality of Life Measure-POQOL); Perceived threat to the survivors’ life (Assessment of Life Threat and Treatment Intensity-ALTTIQ) – Family factors Family functioning (Family Assessment Device-FAD) Outcome: Caregiver Demand (BCOS Caregiver Outcome Scale - BOCOS) Analysis: Multiple regression analyses

Caregivers’ Demographics Reporting analysis of 102 caregivers – Mean age: 52 years (SD=5.56) – Married: 75% – Household Income: 20%<$40,000 US – Employed: 51% full-time; 22% part-time – Education: 30% college – Race/ethnicity: 89% Caucasian

Survivors’ Demographics RangeMean Years SD Age at enrollment Age at diagnosis Years since diagnosis

Low-grade gliomas (40.4%) Medulloblastoma/PNET (31.7%) High grade gliomas (8.7%) Cariopharyngiomas (5.8%) Germ cell tumors (3.8%) Others (7.7%) Ependymomas (1.9%) Survivor tumor diagnoses

Increased Caregiver State Anxiety Predicts Increased Demands on the Caregiver p<.05

Poorer Survivor Physical QOL Predicts Increased Demands on the Caregiver p<.05

Conclusions Both caregiver (State Anxiety) and survivor (Physical QOL) functioning influenced the level of demands experienced by the caregiver – Potential targets for intervention Further analyses when finish enrollment Future directions: foundation for longitudinal study

Acknowledgements Funding sources – R01 NR A1 7/17/ /31/2011 NIH/NINR – Neuro-Oncology Nursing Research Grant 3/18/09-3/15/11 Oncology Nursing Foundation