Description

While communication is increasingly recognized as a critically important element in the cancer care process, health care communications specific to cancer are not well understood. Consumers consistently report that both effective and ineffective communication, particularly between doctors and patients, has a significant impact on their decision-making, their emotional state, and their ability to cope with cancer. There is convincing evidence that communications play a considerable role in quality of life with cancer, and may have an indirect impact on more traditional outcome measures. However, because communication is inherently individualized and contextualized, it has been difficult to study it using traditional research methods, and much of what is currently understood about cancer care communication is extracted from studies about specific behaviors within critical medical consultations, such as those in which specific treatment decisions are made. Little is known about the larger context of health care communications that shapes the ongoing experience of receiving cancer care.

In this research, patterns and themes specific to communication in cancer care will be documented, analyzed and interpreted. Primary data will be obtained from focus groups and interviews with volunteer cancer patients representing a wide range of demographic, disease, and contextual situations (approximately 250 persons will be involved in this process). The findings from this phase of the research will be synthesized into preliminary principles and guidelines for communication from a consumer perspective. In a secondary phase of this study,these preliminary guidelines will be used as a basis for discussion in interviews with selected health care professionals who have a demonstrated interest in elevating the general level of communications in oncology. Their perceptions are expected to provide a grounding for the proposed principles, articulating any challenges, exceptions, or variances that may be relevant from the perspective of those with clinical experience in the field. The findings will become the basis for the eventual articulation of evidence-based practice standards forcommunication in cancer care.

The research methods that will be used in this study are drawn from the naturalistic tradition of studying a phenomenon in context, strategically sampling that phenomenon for its predictable and emerging variations, and analyzing patterns and themes within the phenomenon using rigorous inductive analytic strategies. Aproximately 100 consumer interviews, lasting an average of 90 minutes, and 20 focus groups comprised of 6-8 consumers each, will be audiotaped, transcribed verbatim, analyzed, coded, and entered into a computer program that facilitates the organization of large, complex coded data sets. This mechanism will allow the investigators to preserve the narrative form of the original accounts and stories, but also perform a number of key sorting and organizing functions as patterns and themes begin to emerge from the study findings. The initial set of findings will serve as the basis for the second phase of the study, testing the consumer perceptions of what ought to constitute communication guidelines for cancer practice against perceptions of selected health care professionals with experience in the field. This secondary step is intended not to challenge the consumer views, but instead to permit insight into any complications that might arise from uncritical acceptance of any particular perspectives so that the findings will have the highest likelihood of being rendered in an acceptable form to the target audiences working in cancer care settings. With a grounded, consumer-oriented, and acceptably presented set of preliminary principles and guidelines for cancer communication, we believe we can most effectively address the gap in standards and thereby influence the ongoing care that cancer patients received in Canada.

Research team

• S.E. Thorne, principal investigator
• G. Hislop, co-investigator
• S. Harris, co-investigator
• B. Nelems, co-investigator