Substantial changes in life: perceptions in patients with newly diagnosed advanced cancer and their spouses

There are few studies on patients' perceptions of their situation after being recently diagnosed with an advanced gastrointestinal cancer and those of their spouses. Fourteen patients and their spouses were interviewed separately. The interviews were analyzed using a phenomenographic approach. The analysis indicated that the response categories for patients and spouses were roughly the same, but the number of patients and spouses who made statements differed between categories. All informants perceived substantial changes in life. This included negative physical, mental, and practical changes as well as positive changes. Mental changes included 3 categories: despair, why, and uncertainty. The informants described several ways of handling these changes in life. The most frequently reported by patients were that "one shouldn't complain" and by spouses to "hope," and by all informants to "make the best of it." Other ways of handling the situation were reconciliation, avoidance, preparation for death, seeking support, and isolation. In conclusion, more patients than spouses seemed to accept their situation because fewer patients complained and instead prepared for death, whereas more spouses felt despair, used hope and avoidance, and were preoccupied with practical matters. These findings suggest that spouses are a vulnerable group and healthcare staff should be just as aware of their situation as that of the patients.