Changes in Caregiver Perceptions Over Time in Response to Providing Care for a Loved One With a Primary Malignant Brain Tumor

PURPOSE/OBJECTIVES: To examine how family members of patients with a primary malignant brain tumor transition into the caregiver role and how their perceptions of this transition change over time. RESEARCH APPROACH: Descriptive, qualitative. SETTING: Neurosurgery and neuro-oncology clinics of a regional medical center. PARTICIPANTS: 10 family caregivers of patients with a primary malignant brain tumor. METHODOLOGIC APPROACH: A series of 11 open-ended questions addressing various aspects of the care situation were administered to each caregiver. The same questions were asked at baseline (within one month of the patient's diagnosis) and four months later. Content analysis was performed to identify themes among interviews. MAIN RESEARCH VARIABLES: Patient changes, caregiver adjustments, and accessing support. FINDINGS: Caregivers described difficulties stemming from the patient's tumor-related dysfunction and changes in their familial, occupational, and social roles. Support from family and friends was vital to caregivers' emotional health, but shock and fear were evident in all interviews. Becoming subsumed in the care situation was described as enmeshment. Caregivers reported difficulty in communicating with healthcare providers. When looking at change over time, three major themes emerged: Patient Changes: The New Normal; Caregiver Adjustments; and Accessing Support. CONCLUSIONS: Caregivers require support in handling neurologic and physical sequelae, transitioning into new roles, and avoiding becoming enmeshed in the care situation. INTERPRETATION: This study underlines the importance of continuing research in this area to provide the necessary interventions that will assist caregivers and provide support throughout their loved one's disease trajectory.