Family care of persons with a brain tumor
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Paula R. Sherwood, PhD, RN, CNRN, FAAN
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Background/purpose. Research has demonstrated that caregivers of persons with cancer and persons with dementia are at risk for negative consequences from providing care, such as increased mortality, depressive symptoms, and anxiety. However, there have been minimal efforts to describe the impact of providing care for persons with both oncological and neurological sequelae. The purpose of this study was to determine the effects of the care recipient's functional, cognitive, and neuropsychiatric status on the caregiver's level of burden and depressive symptoms for caregivers of persons with a primary malignant brain tumor, and to determine whether caregiver mastery and perceived adequacy of information to care moderated these relationships.
Conceptual framework. Based on Lazarus and Folkman's Theory of Stress and Coping, the care recipient's functional, cognitive, and neuropsychiatric status dictate care demands identified during the primary appraisal that are met using resources identified during the secondary appraisal (mastery and perceived adequacy of information to care). Caregivers' stress response reflects the imbalance between care demands and caregiver resources, operationalized as caregiver burden and depressive symptoms.
Methods. The cross-sectional, descriptive study consisted of telephone interviews with 95 adult caregivers of adults with a primary malignant brain tumor recruited from two national brain tumor support groups, two urban cancer centers, and a statewide cancer registry. The 45–60 minute interview consisted of sociodemographic questions and the following instruments: Activities of Daily Living/Instrumental Activities of Daily Living (α = .93); Cognitive Performance Scale (α = .71); Neuropsychiatric Inventory (α = .78); Patient Satisfaction Questionnaire (α =.96); Caregiver Mastery (α = .73); Caregiver Reaction Assessment (subscales: self esteem α = .79, abandonment α = .83, finances α = .87, schedule α = .75, health α = .70); and CESD (α = .89).
Data analysis. Using structural equation modeling, relationships were formulated among variables, model fit assessed, and respecification was done to interpret relationships. Findings: The overall model demonstrated good fit indices (rmsea = .05, χ2 = 11.6 p = .24, gfi = .93) Care recipients' cognitive status and instrumental activities of daily living status did not significantly affect caregiver burden or depressive symptoms. Higher numbers of neuropsychiatric symptoms predicted higher levels of caregiver depressive symptoms and higher levels of caregiver burden in all burden subscales (self esteem, finances, schedule, abandonment, and health). Higher levels of care recipient dysfunction in activities of daily living led to higher levels of caregiver burden regarding the impact of providing care on the caregiver's schedule and health. Perceived adequacy of information to care did not have a significant moderating or direct effect on caregiver outcomes. Higher levels of caregiver mastery directly predicted less depressive symptoms and burden, and moderated the effects of neuropsychiatric symptoms on caregiver burden and depressive symptoms.
Conclusions. Study findings emphasize the importance of controlling patients' neuropsychiatric symptoms and providing assistance to caregivers on how to cope with and manage neuropsychiatric symptoms in the home. Caregivers also need information on how to manage activities of daily living problems on the part of the care recipient.
American Cancer Society;
Oncology Nursing Society Foundation;
American Brain Tumor Association;
Alpha Psi Chapter of Sigma Theta Tau International Honor Society of Nursing;
Michigan State University College of Nursing;
Mary Margaret Walther Program of the Walther Cancer Institute
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 3146103; ProQuest document ID: 305156528. The author still retains copyright.
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
Type | Dissertation |
Acquisition | Proxy-submission |
Review Type | None: Degree-based Submission |
Format | Text-based Document |
Evidence Level | Cross-Sectional |
Research Approach | Quantitative Research |
Keywords | Patients with Brain Tumors; Neurooncology; Caregiver Outcomes; Neuropsychiatric Symptoms; Caregiver Burdon |
Grantor | Michigan State University |
Advisor | Given, Barbara; Given, Charles W.; Schiffman, Rachel; von Eye, Alexander |
Level | PhD |
Year | 2004 |
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