Poor Communication in Cancer Care

Patient Perspectives on What It Is and What to Do About It

Sally Thorne, PhD, RN, FAAN, FCAHS; John L. Oliffe, PhD, RN; Kelli I. Stajduhar, PhD, RN; Valerie Oglov, BSW, MA; Charmaine Kim-Sing, MD, FRCPC; T. Gregory Hislop, MDCM, MSc

Disclosures

Cancer Nurs. 2013;36(6):445-453. 

In This Article

Methodological Orientation to the Patient-Perspective Research

In an ongoing program of qualitative longitudinal and cross-sectional research addressing helpful and unhelpful cancer care communication, funded by national Canadian health research and cancer nonprofit organizations, we have been analyzing how patients' needs and preferences related to communication with healthcare professionals change across the trajectory of the cancer journey. In this work, we look for the commonalities across cases and also unique attributes and sensibilities that each individual brings to the cancer experience so that we can better understand patterns in communication experience and interpret the knowledge, skills, and attitudes that will allow clinicians to extend their competencies beyond what can be represented in a standardized protocol. The overarching questions guiding our research are as follows:

  1. How do cancer patients describe and explain helpful and unhelpful communication?

  2. How do the needs, preferences, and priorities of patients in relation to their communications with professional healthcare providers change over the course of a cancer illness?

Interpretive Description

The methodological approach informing our research program is interpretive description,[40] which is a qualitative method designed to expand beyond the social theorizing of Grounded Theory[41] and the contextual examination of Naturalistic Inquiry,[42] drawing on the explicit logic of how knowledge is used in the applied health disciplines.[43] Instead of trying to fit a study into a theoretical grounding drawn from the social science origins of conventional qualitative methods, this approach relies on the knowledge-to-practice orientation of health disciplinary logic. In this sense, it helps the researcher seek out the kind of knowledge that is needed to inform, and potentially change, practice.

In keeping with this method, multiple approaches were used to recruit voluntary samples representing a diversity of study participants with various demographic and disease variables. The protocol for the ongoing longitudinal study, which has held approval over time from our local university's ethical review board, involves face-to-face initial individual interviews followed by an ongoing series of bimonthly face-to-face or telephone interviews, in accordance with patient preference. The interviewers, who have both health professional and qualitative inquiry training, adjust the schedule as needed, according to the patient's changing clinical circumstances. As might be expected, several members of the initial cohort have died, and the priorities of others have shifted away from focusing on cancer as they enter survivorship. Repeated interviews over an extended period provide unique insights about a changing clinical portrait. This large and complex database provides a rich resource for the exploration of evolving themes, including not only themes that were expected in the original research protocol, but also themes that arise as a result of ongoing data collection and analysis.

Data Collection

In an initial phase of the study (2005–2009), we recruited 60 newly diagnosed cancer patients, conducted in-depth interviews in relation to their experiences with communication in the cancer care system, and followed them bimonthly over time. In a second phase (2009–2013), we expanded that cohort to include more patients with advanced disease as well as those with additional diversity in demographic and clinical conditions ( Table ). Currently, the large qualitative database we are continuing to build consists of more than 500 transcribed individual interviews with 125 cancer patients.

Analytic Approach

Verbatim transcripts of interview data have been coded using the NVivo (QSR International Pty Ltd, Melbourne, Australia) qualitative data management software system for patient, disease, and treatment attributes as well as trajectory elements. Study participants tend to initially convey perceptions about communication in anecdotal form. Our interview techniques encourage them to expand upon their narratives to deepen our capacity to understand their intended meanings. We code data related to these communication narratives as helpful or unhelpful as well as in relation to the numerous variables that arise from the evolving analysis. This coding system helps us "see" emerging patterns in the overall data set and facilitates comprehensive thematic interpretations about the broader context in which these narratives reside.

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