Changing communication needs and preferences across the cancer care trajectory: insights from the patient perspective.

PURPOSE: In this program of research, we sought to expand our understanding of how cancer patients' communication needs and preferences change across the course of their illness trajectory. To address known limitations in the empirical knowledge base, we designed a study capitalizing on representative patient reports as they occurred within time and across experience obtaining care for this disease. METHODS: We used a longitudinal cohort design informed by interpretive description methodology to follow 125 patients over a multi-year period as they reflected on their ongoing experiences with cancer care communication. RESULTS: In relation to each phase of their cancer care trajectory, patients identified tension points and contextual challenges impinging on what they felt constituted helpful and unhelpful patient-provider communication. CONCLUSIONS: Findings from this study create a dynamic portrait of how we can better inform communication approaches and interventions through interpretations of population knowledge and individual experience.

Communication challenges for chronic metastatic cancer in an era of novel therapeutics.

Advances in the production of novel therapies for cancer management are creating new challenges for the support of increasing numbers of persons surviving for extended periods with advanced disease. Despite incurable and life-limiting metastatic conditions, these patients are living longer with serious disease, pushing the boundaries of what science explains and clinicians can confidently interpret using available evidence. Here we report findings from an early subset of such individuals within a longitudinal qualitative cancer cohort study on clinician-patient communication across the cancer trajectory. In these findings, we contextualize experiential accounts of communication in a changing environment of the costs and uncertainties of personalized medicine, and examine the complex psychosocial circumstances of this rapidly growing patient population. Interpretation of these findings illustrates how emerging issues in cancer treatment influence the experience of these patients, their social and support networks, their cancer care specialists, and the multidisciplinary teams charged with coordinating their care.

Poor communication in cancer care: patient perspectives on what it is and what to do about it.

BACKGROUND: Communication in cancer care is a recognized problem for patients. Research to date has provided limited relevant knowledge toward solving this problem. OBJECTIVE: Our research program aims to understand helpful and unhelpful communication from the patient perspective and to document changes in patient needs and priorities over time. In this analysis, we focus on patient perceptions of poor communication. METHODS: Using a qualitative longitudinal approach informed by interpretive description methodology, we are following a cohort of adult cancer patients across their cancer journey. We used constant comparative analysis of repeated interviews to examine thematic patterns in their perceptions and interpret both commonalities and diversities. RESULTS: Patient accounts reveal 3 types of poor communication. "Ordinary misses" are everyday missteps for which maturation and socialization may be an adequate solution. "Systemic misunderstandings" are assumptive gaps between patients and professionals, which may be addressed through qualitative research. "Repeat offenders" are a subset of clinicians whose communication patterns become a particular source of patient distress. CONCLUSIONS: This typology offers a novel way to conceptualize the problem of poor communication in cancer care toward more effective solutions for the communication problem. Managing the communication of a problematic subset of clinicians will likely require strategic interventions at the level of organizational culture and models of care. IMPLICATIONS FOR PRACTICE: Nurses can play a meaningful role in detecting and buffering sources of poor communication in the practice context. Addressing poor communication may be a further reason to advocate for interprofessional team-based care models.

Prostate cancer support groups, health literacy and consumerism: are community-based volunteers re-defining older men's health?

In this article we describe the connections between prostate cancer support groups (PCSGs) and men's health literacy and consumer orientation to health care services. The study findings are drawn from participant observations conducted at 16 PCSGs in British Columbia, Canada and 54 individual interviews that focused on men's experiences of attending group meetings. Men's communication and interactions at PCSGs provide important insights for how men talk about and conceptualize health and illness. For example, biomedical language often predominated at group meetings, and men used numbers and measures to engage with risk discourses in linking prostate cancer markers to various treatment options and morbidity and mortality rates. Many groups afforded opportunities for men to interact with health care providers as a means to better understand the language and logic of prostate cancer management. The health literacy skills fostered at PCSGs along with specific group-informed strategies could be mobilized in the men's subsequent clinical consultations. Consumer discourses and strategies to contest power relations with health care professionals underpinned many men's search for prostate cancer information and their commitment to assisting other men. Key were patients' rights, and perhaps responsibility, to compare diverse health products and services in making decisions across the entire trajectory of their prostate cancer. Overall, the study findings reveal PCSGs as having the capacity to contest as well as align with medical expertise and services facilitating men's transition from patient to informed health care consumers. The processes through which this occurs may direct the design of older men's health promotion programs.

Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period.

Communication is a notoriously complex challenge in the cancer care context. Our program of research involves exploration of patient-provider communications across the cancer trajectory from the patient perspective.Toward this end, we have been following a cohort of 60 cancer patients, representing a range of tumor sites, from immediately after diagnosis through to recovery, chronic, or advanced disease. Drawing on interpretive description analytic techniques, we documented patterns and themes related to various components of the cancer journey. In this article, we report on findings pertaining to poor communication during the initial diagnostic period, as described by patients at the time of diagnosis and 1 year later.These findings illuminate the dynamics of communication problems during that complex period, and depict the mechanisms by which patients sought to confront these challenges to optimize their cancer care experience. On the basis of these findings, considered in the context of the body of available evidence, suggestions are proposed as to appropriate directions for system-level solutions to the complex communication challenges within cancer care.

Time-related communication skills from the cancer patient perspective.

OBJECTIVE: Although it is well recognized that skilled communication is an essential element of effective cancer care, lack of time to communicate is often cited as an explanation for the ongoing cancer care communications problems patients report. In this study, we sought to answer the question: How do cancer patients describe and explain the effects of health care communication upon their experience of time? METHODS: We conducted a qualitative secondary analysis, using interpretive description methodology, on a large data set that comprised transcribed interview data from two studies of cancer communication from the patient perspective. One primary study represented a cross-sectional study of helpful and unhelpful communications (n=200) and the other a longitudinal study of changes in communication needs and preferences over the illness trajectory (n=60). RESULTS: We found time a meaningful and symbolic construct for cancer patients. They describe clinician time-related attitudes and behaviors as significant factors in shaping the impact of clinical encounters on their overall psychosocial cancer experiences. They report a number of ways in which clinician communications have been particularly effective in buffering and manipulating the impact of time pressures and describe a capacity within exceptionally skilled clinicians to manufacture a perception of available time even in the context of such pressures. CONCLUSIONS: We believe that the patient perspective on cancer care communication provides an important angle of vision from which to discern strategies that may assist clinicians to buffer the untoward effects of the time pressure under which most care systems currently operate.

Cancer care communication: the power to harm and the power to heal?

OBJECTIVE: This study was designed to examine the belief held by many cancer patients that communication with their care providers has a meaningful part to play in shaping their disease outcomes. METHODS: From a large qualitative interview data set in which cancer patients described their perceptions of helpful and unhelpful heath care communication; we extracted the accounts of 69 patients and 13 focus group participants who specifically articulated a perceived relationship between communication and cancer outcomes. Through secondary analysis of that subset, we generated an interpretive description of patterns and themes within their accounts of a relationship between communication and cancer survivorship. RESULTS: Our findings document patient perceptions of the mechanisms involved in indirect and, some instances, direct relationships between communication encounters and cancer outcomes. CONCLUSION: Some cancer patients believe that, by virtue of its influence upon comfort, inclusion, clarity and hope, communication can influence cancer outcomes. PRACTICE IMPLICATIONS: While competing discourses exist within the patient population with regard to such associations, the perception that communication may influence clinical outcomes seems sufficiently pervasive and persistent that it warrants serious attention within care systems and by the psychosocial cancer research community.

Prognosticating futures and the human experience of hope.

OBJECTIVES: Communication between health care providers and patients with cancer and other chronic diseases typically references probabilities that certain future events will or will not occur. Beyond the context of diagnostic encounters and the transmission of "bad news," such "prognostic" communications take place in various forms throughout the illness trajectory. It is well known that such information transmitted badly can have devastating psychosocial consequences for patients and their families and, conversely, that difficult information exchanged with sensitivity can lend tremendous support. This study aimed to extend our understanding of how such communications are received and interpreted by patients, so that we might optimally apply what we know about general principles of effective communication within the particularly challenging context of predicting futures. METHODS: We conducted a combined secondary analysis of two prior qualitative studies into patient perceptions of helpful and unhelpful health care communication with 200 cancer patients and 30 persons with chronic illness. These data sets offered a rich resource for comparing perceptions across a range of contextual variables, and secondary analysis focused on future-oriented interactions, including both prognostication and prediction. RESULTS: The accounts of patients with cancer and chronic illness reveal various ways in which health care communications involving future projections interact with their human experience of hope, powerfully shaping their capacity to make sense of and live with serious illness. They include a synthesis of what patients recommend health care professionals know and understand about this challenging dynamic. SIGNIFICANCE OF RESULTS: The findings of this study offer a distinct angle of vision onto the various communications that involve future predictions, illuminating a patient perspective with the potential to inform health care communication approaches that are both informative and therapeutic. As such, the study supports a dynamic understanding of the tenuous balance between hope and honesty in the clinical encounter.