| Summary: | For patients living with End Stage Renal Disease (ESRD), encounters with health care providers are frequent and long-term. Communication forms much of the basis of these encounters and yet little is known about communication in ESRD care. This study was thus undertaken in an attempt to develop some preliminary understandings of helpful and unhelpful communication in the context of the care of these patients. Interpretive description was the qualitative method utilized in this study, where the investigator posed the question: How do individuals with ESRD explain and describe helpful and unhelpful communication in renal disease care? Eight people participated in this study. Four women and three men who had been diagnosed with ESRD for at least five years were interviewed regarding their experiences of communication. One family member of a patient with ESRD also participated. Participants had experienced at least one of the four treatment modalities, and several had experienced all four, thereby providing perspectives from the full range of ESRD treatments, where patient-provider communication take varying forms. Descriptions of helpful and unhelpful communication with ESRD care providers, were grouped into two major themes that illuminate the complexities of communicating while experiencing illness and dealing with a changing and complex health care system. Vulnerability and vigilance were those themes, within which several sub-themes arose. Specifically, being ill, recognizing that care is fragmented and that not all providers are helpful communicators were contributors to vulnerability. In an effort to mediate this vulnerability, participants undertook vigilant behaviors, such as getting educated in order to monitor the activities expected of providers, and creating networks of health care allies who were supportive and helpful. Participants thus functioned, in varying ways, as coordinators of their own care and utilized their health care allies to provide advice, emotional and political support, depending on what was necessary in the moment. However, the work of vigilance proved to be considerable. The communication and responsibilities involved in coordinating care, maintaining networks and ensuring the appropriateness of care presented unique challenges for participants. The findings of this study suggest that ESRD care providers might benefit from further consideration about the ways in which health care is communicated, organized, and delivered in order to make illness management less burdensome for patients.
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