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Caregiving demands: Survivors of Childhood Brain Tumors

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.

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Caregiving demands: Survivors of Childhood Brain Tumors

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  1. 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

  2. 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

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

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

  5. Methods • Design: Cross sectional telephone survey of 200 mothers who are caregivers in an ongoing study of brain tumor survivors • Survivor criteria: • 14-40 years old • 5 years from diagnosis • 2 years from treatment • Live in the caregivers’ household

  6. 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

  7. 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

  8. Survivors’ Demographics

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

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

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

  12. 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

  13. Acknowledgements • Funding sources • R01 NR009651-01A1 7/17/2007-5/31/2011 NIH/NINR • Neuro-Oncology Nursing Research Grant 3/18/09-3/15/11 Oncology Nursing Foundation • http://caregiverproject.securespsites.com

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