Activism among exceptional patients with cancer.

BACKGROUND: The "exceptional patients" with cancer are survivors who had advanced cancer considered incurable by medical report and who subsequently became disease-free or experienced unexplained survival time given the nature of their disease or treatment. This experience is a puzzling phenomenon that has not been formally investigated in a cancer population. The purpose of this study was to understand exceptional patients' accounts of their experience. MATERIALS AND METHODS: This study used a narrative approach with a cross-case thematic analysis. Recruitment took place at health care centers in the USA and Israel. Oncologists in both centers were asked to identify patients who had an exceptional disease course. Patients were then contacted and interviewed; an audio recording was made of each narrative account and then transcribed. Interviews and thematic analyses were conducted independently at each site. These thematic findings from each site were discussed with both research teams and a common underlying theme was identified, which is the focus of this report. RESULTS: Twenty-six participants were interviewed: 14 from the USA and 12 from Israel. All the participants have had advanced disease with a range of diagnoses that included breast, colorectal, pancreatic, ovarian cancer, glioblastoma multiforme, and others. The main recurrent theme from both the US and Israeli sites was personal activism. This was manifested in taking charge and getting involved in the process of diagnosis and treatment, as well as becoming more altruistic in their relationships with others. In many cases, this was reflected in a change in a philosophy about life. CONCLUSIONS: In this study, we found that activism was a major theme that was independently observed in both Israel and the U.S.A. This has implications for health care providers to facilitate patient engagement in the care and treatment of their disease. Further research on this phenomenon is needed.

Telling their stories, telling our stories: physicians' experiences with patients who decide to forgo or stop treatment for cancer.

There is currently very little research on how physicians respond to patients with cancer who decide to forgo or stop medically recommended "curative" therapy. The purpose of this article is to report on a qualitative study with 12 oncology specialists in Israel and Australia that addresses this question. The findings indicate that physicians tend to construct patients and their decisions in terms of mutually exclusive categories that focus on curability of the disease, rationality of the patient's decision, and patients' personal attributes. Physicians' constructions of their experience focus on uncertainty and concern. Although contextual factors play a role in how physicians act in this situation, Israeli and Australian oncologists are remarkably similar in how they describe their own and their patients' experiences.

Institutional narratives in the discourse between oncology social workers and cancer patients' self-help organization.

In this study, the authors examine a discourse between members of a cancer patients' self-help organization (CP-SHO) and oncological social workers (OSWs) on support groups for cancer patients. Eight OSWs and 8 CP-SHO volunteers served as the key research population. Using the interpretive-narrative approach to research, the authors apply a variety of data collection methods and a combination of data analysis methods: narrative analysis and discourse analysis. The findings point to the simultaneous existence of two institutional narratives for each organization, one internal and the other external. Discourse between the organizations takes place mainly at the external institutional narrative level, with each body maintaining the mistaken impression that the other's perception of reality is similar to its own (false consensus). In the meantime, the internal narratives that attest to the latent meaning of the discourse govern the interaction and prevent effective dialogue between the respective organizations.