When a Family Member Has a Malignant Brain Tumor

The Caregiver Perspective

Abstract

 

The incidence of primary malignant brain tumors has remained stable over the past 10 years, with median survival reported as 12 months. Once the patient has been diagnosed, providing care for him or her is primarily performed by family members. Although previous research has documented the stress, depression, anxiety, and burden associated with caregiving, when these conditions occur is not known. The purpose of this study was to explore the caregiver perspective of providing care while the patient was receiving chemotherapy as initial treatment for the disease. Using phenomenological techniques, data were obtained from semistructured interviews with family caregivers and self-disclosed demographic data. Each interview occurred while the patient was receiving treatment; all patients were within 6 months of initial diagnosis. Interview data were analyzed using Colaizzi's method, which allowed themes universal to the participants to be uncovered. Interview data from 10 participants provided saturation and identified three themes: (a) the diagnosis of a brain tumor is a shock; (b) immediate family role changes occur; and (c) there are psychosocial effects for the caregiver, his or her family, and the person with the brain tumor.