Informal caregiving in patients with brain tumors

Purpose/Objectives: To explore the experience of informal caregivers of patients with a primary brain tumor by identifying themes of the caregiving experience specific to this population. Research Approach: Qualitative study employing Parse's descriptive exploratory method. Setting: National Cancer Institute-designated comprehensive cancer center in a major city in the southern United States. Participants: 20 patients with primary brain tumors and their caregivers. Methodologic Approach: Data collection involved a tape-recorded dialogue with caregivers using Story Theory. Patient and caregiver demographic information was collected. Main Research Variables: Concepts of commitment, expectation management, role negotiation, self-care, new insight, and role support. Findings: Caregivers of patients with primary brain tumors used the energy sources identified by the Model of Informal Caregiving Dynamics. Commitment is sustained through enduring patient cognitive and behavioral decline. Expectations are based on a realistic understanding of the disease trajectory and known mortality, and allow caregivers to hope for the ability to manage declining patients. Caregivers express difficulty in gauging the behavior of cognitively impaired patients. Healthcare providers support caregivers by supplying information and listening to caregivers' stories. In contrast to a similar study involving caregivers of bone marrow transplantation recipients, these caregivers reported negative perceptions. Conclusions: Commitment, expectation management, role negotiation, self-care, new insight, and role support motivate informal caregivers of patients with primary brain tumors in a unique way. Interpretation: Healthcare providers can support the caregiving experience by validating efforts, providing information, and listening to frustrations. Additional research should explore interventions aimed at assisting caregivers.