Amanda J. Young

Patients as partners, patients as problem-solvers.

This article reports our ongoing work in developing a model of health care communication called collaborative interpretation, which we define as a rhetorical practice that generates building blocks for a more complete and coherent diagnostic story and for a collaborative treatment plan. It does this by situating patients as problem-solvers. Our study begins with an analysis of provider-patient interactions in a specific setting-the emergency department (ED) of an urban trauma-level hospital- where we observed patients and providers miscommunicating in at least 3 distinct areas: over the meaning of key terms, in the framing of the immediate problem, and over the perceived role of the ED in serving the individual and the community. From our observations, we argue that all of these miscommunications and missed opportunities are rooted in mismatched expectations on the part of both provider and patient and the lack of explicit comparison and negotiation of expectations-in other words, a failure to see the patient-provider interaction as a rhetorical, knowledge-building event. In the process of observing interactions, conversing with patients and providers, and working with a team of providers and patients, we have developed an operational model of communication that could narrow the gap between the lay public and the medical profession-a gap that is especially critical in intercultural settings like the one we have studied. This model of collaborative interpretation (CI) provides strategies to help patients to represent their medical problems in the context of their life experiences and to share the logic behind their health care decisions. In addition, CI helps both patient and provider identify their goals and expectations in treatment, the obstacles that each party perceives, and the available options. It is adaptable to various settings, including short, structured conversations in the emergency room, extended dialogue between a health educator and a patient in a clinical setting, and group discussions in support groups, community groups, or health education classrooms.

Meaning and Agency in Discussing End-of-Life Care: A Study of Elderly Veterans' Values and Interpretations

The authors of this exploratory study used textual analysis of transcribed interviews to examine the mental constructs that individuals form around advance care terminology and to learn how elderly veterans conceptualize the language used in the Veterans Administration advance directive. They found that respondents often negotiated meaning by drawing on rigid schemas, specific mental constructs already in place: The Lords Will, Machine Talk, Being a Burden, and Being Productive. The authors also examined the transcripts for agency. In addition to assigning external agency for end-of-life care decisions, respondents often expressed a complex interaction of “self” and “other” agency. These results challenge us to develop communication methods that allow patients to claim agency and participate fully in decisions regarding their health care, especially at the end of life.

Keeping Users at the Center: Developing a Multimedia Interface for Informed Consent

Viewing “informing” as a process to protect patients and support autonomy, we undertook a user-centered design process to develop online support for informed consent in pediatric Phase I research trials. Challenges included (a) delivering accurate information to people unfamiliar with medical terminology; (b) delivering this information humanely under time constraints and heightened emotions; (c) allowing users control over the information, while ensuring availability of legally required information. We addressed these challenges through analyses of audience, task, and information design.

Agency and Communication Challenges in Discussions of Informed Consent in Pediatric Cancer Research

In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication. Our goal was to understand how individuals rhetorically constructed agency in discussions of informed consent experiences. After transcribing and coding the focus group interviews, we identified six aspects of agency in participants’ discourse: (a) defining roles, (b) seeking information, (c) providing information, (d) supporting others, (e) making decisions, and (f) claiming agency for self. Examining these aspects of agency indicated that efforts to improve the informed consent process must address: (a) status differentials, (b) role definitions, (c) information flow, and (d) relationships.

African American Veterans' Experiences with Mobile Geriatric Care

To explore perspectives concerning use of a mobile geriatrics unit (MGU) by underserved populations in low-income urban neighborhoods, we recruited 18 elderly African American patients and engaged them in in-depth semistructured interviews. Using grounded theory techniques of constant comparative analysis, we found that most patients learned about the MGU from community members and initially visited it to determine whether it would be worth using in the future. In describing their MGU experiences, patients tended to focus on three main factors: quality of care, accessibility of services, and ambience of the care setting. They reported that the MGU allowed them to have their health conditions and medications monitored regularly and functioned as a central link to the larger Veterans Affairs health care system. The findings suggest that using MGUs is an acceptable and effective way to help medically underserved populations receive primary medical care and referrals to specialty care.

The Rhetoric of Fraud in Breast Cancer Trials: Manifestations in Medical Journals and the Mass Media—And Missed Opportunities

In 1994, the Chicago Tribune announced in a blaring page-one story that fraud had been discovered in an important nine-year-old medical study which compared two treatments for early-stage breast cancer. The study had assured women that lumpectomy plus radiation was as safe as the more invasive mastectomy procedure for early-stage breast cancer; however, the revelation of fraud called these results into question. We examine the reactions of two professional medical journals to demonstrate how negotiations for upholding ethical norms in science took place within the pages of these publications. Then, we analyze the public discourse surrounding the fraud and show that much of the coverage was devoted to scandal. Both forums missed opportunities: professional journals ignored a chance to explore the blurry boundary between “writing up” and “making up” results that all scientists must negotiate in interpreting and publicizing data, while public discourse neglected women affected by the fraud.

Disenfranchised grief following African American Homicide loss: an inductive case study.

Disenfranchised grief is experienced when a mourner’s grief response is socially invalidated, unacknowledged, or discouraged. When the circumstances of death or the emotional reactions of the griever violate social norms, empathic failures can occur within the bereaved individual’s support systems. This study used conventional content analysis, an intensive and inductive qualitative research method, to analyze the experience of one African American woman who lost her only son to homicide, a particularly distressing and marginalized form of loss. Results elucidate both the empathic failings and resiliencies within the social systems of this griever and emerged from the perspectives offered by the bereaved mother and her primary supporter. Clinical implications and suggestions for future research are discussed.

Family Caregiver Communication in the ICU: Toward a Relational View of Health Literacy

ABSRACT We interviewed 18 family caregivers about their communication experiences in the ICUs at an urban hospital. Analysis of their narratives suggests health literacy is important in family caregiver/healthcare provider communication, especially as complicated illnesses move the caregiver deeper into decision making. Using the domains of Yuen et al.’s conceptual model of caregiver health literacy (2015), we identified three themes within the context of ICU communication: agency, coordinated communication, and caregiver’s evolving role. We saw family caregivers negotiating domains of health literacy as they built upon knowledge of the patient’s needs, their rights as family caregivers, and the hierarchy of the professional staff. We found that these narratives represent co-created, or relational communication, rather than individual health literacy skills. Conceptualized in the transaction of relationship, health literacy is enacted; it is socially constructed and is the scaffolding upon which family caregivers make decisions, care for their loved one, and care for themselves.

Plain Language and Health Literacy for the Oncology Family Caregiver: Examining an English/Spanish mHealth Resource

OBJECTIVES To explore an mHealth resource to support the limited-English-proficient cancer family caregiver. DATA SOURCES Structured interviews with oncology clinic providers to assess a nurse-delivered resource to support health literacy and decision-making along the cancer trajectory. CONCLUSION Limitations in communicating about oncology care with limited-English caregivers is evident. The mHealth resource examined here shows promise to improve relational health literacy between the oncology nurse and family caregiver. IMPLICATIONS FOR NURSING PRACTICE Communicating with limited-English-proficient family caregivers invites oncology nurses to seek out resources to create shared understanding.