Caring for patients with brain tumor: the patient and care giver perspectives.

BACKGROUND Patients with brain tumors form a heterogeneous group in terms of clinical presentation and pathology. However, the impact of the disease on patients' families is often more homogenous and frequently quite profound. A considerable body of literature is available on the management of brain tumors and recently, the National Institute for Clinical Excellence has developed guidelines on the care of brain tumor patients that should improve the overall outcome for the patient from both the disease and psychological aspects. OBJECTIVES An increasing number of studies have attempted to address the impact of the disease on the care givers and relatives of these patients, but few have considered the problem simultaneously from both the patient's and care giver's perspective. In this study, we analyzed the psychosocial and general health of brain tumor patients and related this to the care givers. MATERIALS AND METHODS This is a questionnaire-based postal survey of 168 patients and their relatives. We examined how the health and psychological well-being of the caregiver may affect the quality of care. RESULTS There is significant physical, social, and psychosocial morbidity associated with caring for brain tumor patients. Patients worry about their care givers and this constitutes additional stress for the patient. CONCLUSIONS No constructive and lasting improvement can be made to the quality of life of patients with brain tumor until the health and welfare of their care givers are factored into the care package. With better service to the patient, it is hoped that the burden of care will lighten for the care givers.