More than 359,000 persons in the U.S. are survivors of a primary brain and/or central nervous system tumors, and approximately 26,000 survivors are children under 19 years of age. Improvements in five- year survival rates, which have slowly improved to 65%, can be attributed to advances in multi-modal therapy including surgery, chemotherapy, and cranial and/or spinal irradiation as well as to improvements in supportive care. Survival of these children, however, comes at a significant cost to their cognitive and social functioning, growth and development, and major organ function as well as to their mothers who are their most typical caregivers. Caregiving for survivors of childhood brain tumors often continues into adulthood, as they typically do not become independent of their families of origin. A gap exists in our understanding about these caregivers in terms of how we can design interventions that will increase their perceived competence as caregivers and reframe their caregiver demands, as well as treat the psychosocial problems of survivors and caregivers, the physical-related problems of survivors, and household functioning. This interdisciplinary study proposes to begin to fill these gaps in our understanding by conducting a mixed methods study based on a heuristic model, Perceived Competence for Caregivers of Brain Tumor Survivors. Quantitative data will be gathered regarding perceived caregiving demands, psychosocial functioning of the survivor and caregiver, physical-related functioning of the survivor, and household functioning from 196 caregivers and their adolescent and young adult survivors (as appropriate) of childhood brain tumors being seen in a large, regional Cancer Survivorship Program and a Neuro-Oncology Program in the Mid-Atlantic United States. (The target sample size provides 80 percent statistical power to define a multivariate model explaining 40 percent of the variation in caregiver competence with a level of significance of .001). All caregivers meeting these criteria will be screened for inclusion in the study: caregivers who are mothers will be recruited if their adolescent and young adult survivors are 5 or more years from diagnosis;2 or more years from discontinuation of therapy;and, between the ages of 14 and 30 years. Qualitative data will then be gathered from a purposeful, criterion based sample of at least 28-40 caregivers from the quantitative phase of the study based on their scores on measures of caregiver competency and caregiver demands. Results of this investigation will be used to meet the short-term goal of describing the variables in the Model and testing the relationships among the variables. This Model can then be used as the basis to meet the long-term goal of developing theory based interventions to enhance the perceived caregiver competence of mothers who are caregivers for children with brain tumors. Nursing and health care providers are concerned about functioning of caregivers as well as the health of long-term survivors of cancer because caregivers cannot be effective in their caregiving roles and assist the survivor with their needs without feeling competent as caregivers.
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