The brain tumor experience and quality of life: a qualitative study.

Despite the attention given to quality of life (QOL) in persons with cancer, very little is currently know about QOL in persons with brain tumors. In the past twenty years, less than twenty articles reflect the actual measurement of QOL in adult brain tumor population. The shortage of QOL studies is disturbing considering the slow progress made in extending the life expectancy of many brain tumor patients and the toxicities of many existing treatment protocols. This qualitative study was undertaken to begin to fill the gaps in the existing literature and to more clearly define QOL in persons with brain tumors. The researchers used an exploratory, descriptive design involving semi-structured interviews of adults with brain tumors and their significant others. Twenty-three adults with brain tumors and 21 significant others were interviewed. Data analysis of interview transcripts focused on the identification of key variables contributing to the QOL of adults with brain tumors. Using constant comparative methods, it was found that data could be organized into five thematic categories: (1) The Stigma of a Mind-Body Illness, (2) An Invasive Disease of the Self, (3) My Family has a Brain Tumor, (4) Dealing with the Medical Diplomats, and (5) Quality of Life: No Substitute for Living. These emerging themes provide information which clinicians caring for brain tumor patients can use to provide care and anticipatory guidance. Unique areas for further research elicited in the study include exploration of the "loss of self" theme, how persons use their estimations of QOL in decision-making and examination of the balance between the need for survival and maintaining QOL.