How do patients and spouses deal with the serious facts of malignant glioma?

Abstract

Malignant glioma is a severe disease with little chance for recovery. Due to its effect on cerebral function, it is also a disease with an obvious social impact on family life. Brain tumours, therefore, produce much of the anguish associated with cancer diseases. There is a lack of prospective studies concerning how patients and spouses together deal with the serious facts of cancer. In this study, a series of 25 consecutive patients with malignant gliomas and their spouses was followed during the whole course of the disease process by repeated thematic interviews. The spouses were also subjected to a summarizing interview after the patient's death. The interviews were analyzed qualitatively in order to detect the various ways the patient spouse couples dealt with this severe situation and how they discussed it with each other. Four different social processes were detected: 1) the patient does not seem to be aware, the spouse is aware but pretends not to be; 2) both are aware, but the patient does not want to share; they drift apart; 3) both are aware, they do/do not talk openly about the gravity of the situation; nevertheless, there is a joint platform; and 4) neither patient nor spouse seems to be aware; they carry on living as before. The patients, compared to the spouses, seemed content with received information. A few of the couples openly discussed death and dying. More common, and apparently sufficient, was a mutual acknowledgement of the serious facts, without using the words ‘death’ and ‘dying’. In a sense, the present findings challenge the awareness categories suggested by Glaser and Strauss.