Background: Clinical research that has no curative intent involving patients nearing the end of life, presents an ethically challenging situation. Previous research has demonstrated that these patients' understanding of clinical trials can be limited. Aim: This study seeks to understand the decision making process of patients with incurable cancer within the context of clinical research trials and to explore the clinical research teams' perspective on patients' decision making. Method: A modified grounded theory approach was used. This approach combined classic grounded theory methodology with the symbolic interaction element of Charmaz' grounded theory. Sixteen patients and eighteen research team members were interviewed. Data were analysed using a constant comparative method. Results: Nothing to lose emerged as the core category. Consenting patients made their decision instantly and were influenced by factors including, desire for increased longevity, an expectation to receive better attention, and the persuasive language used by doctors and nurses. They gave little consideration to the side-effects of the trial drug. Patients who declined did so after much deliberation . They were concerned about extra hospital visits and unknown side-effects. Oncologists and clinical research nurses believed that clinical care was highly protocolised and therefore better than care during standard treatment and as a result they thought that patients had nothing to lose by participating in a clinical trial. Conclusion: These findings demonstrate that patients' motivation for trial consent is complex. They perceive themselves in a paternalistic relationship with their doctor and thus are influenced by the emotional context and language used. Patients evaluated the risk of trial participation in the context of a limited lifespan thinking "I have nothing to lose." Consenting patients put significant value on the trial as a vehicle of hope and personalised care from the research team, whereas decliners decided they had more to lose by trial participation and opted for standard treatment.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:648023 |
| Date | January 2015 |
| Creators | Murphy, Mary |
| Publisher | Ulster University |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
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