A new reality: long-term survivorship with a malignant brain tumor.

PURPOSE/OBJECTIVES To explore the survivor experience of adults who have been diagnosed three years or longer with a primary malignant brain tumor (PMBT). RESEARCH APPROACH Qualitative using a biographical narrative approach. SETTING Six sites across the United States. PARTICIPANTS Survivors of PMBTs (N = 35) and their family caregivers (N = 35). METHODOLOGIC APPROACH Using a semistructured interview guide, survivors and caregivers were interviewed individually about their lives before and since the PMBT diagnosis. Thematic analysis was performed to identify themes. FINDINGS Stability in survivor lives disintegrated as a result of the changes experienced related to the tumor and its treatment. Those changes were profound and ultimately contributed to multiple losses in key areas of their lives. Over time, living with the diagnosis and its consequences required survivors and their caregivers to adapt to the new reality of their lives. Through the process of becoming a survivor, individuals were able to take back control of their lives. Adaptation required survivors to use internal and external resources as ways of coping with their new reality. CONCLUSIONS People with PMBTs require support as they adapt to losses and changes that impact their lives. Assessment of specific changes that impact survivors' lives may be useful in guiding type of support given. Symptom management and mobilization of internal and external resources may lessen the life-changing impact. INTERPRETATION Nurses should capture symptom meaning during assessments and expand assessments to include social support systems. Instituting measures that facilitate survivor independence may lessen the impact of disability. The significance of symptom worsening over time requires additional research. KNOWLEDGE TRANSLATION Restoring self-worth and taking control of their lives are critical concerns for survivors of PMBTs.