Jennifer J. Bute

Surrogate Decision Makers and Proxy Ownership: Challenges of Privacy Management in Health Care Decision Making

This study explored the communicative experiences of surrogates who served as decision makers for patients who were unable to convey health information and choices about treatment options. Drawing on assumptions from communication privacy management theory (Petronio, 2002), 35 surrogates were interviewed to explore how they navigated the role of guardian of patients’ private health information while the patient was hospitalized. This research determined that not only are surrogates guardians and thereby co-owners of the patients’ private health information, they actually served in a “proxy ownership” role. Surrogates described obstacles to both obtaining and sharing private health information about the patient, suggesting that their rights as legitimate co-owners of the patients’ information were not fully acknowledged by the medical teams. Surrogates also described challenges in performing the proxy ownership role when they were not fully aware of the patient’s wishes. Theoretical and practical implications of these challenges are discussed.

Public Discourses About Teenage Pregnancy: Disruption, Restoration, and Ideology

Two recent incidents in the United States generated a wealth of public discourses about a particular reproductive health issue: adolescent childbearing. As the media, political pundits, and private citizens pondered the meaning of these events, they expressed viewpoints, explanations, and possible solutions in mass-mediated outlets. We examined the discourses communicated in such outlets to understand how public discussion of teenage pregnancy reveals ideological assumptions about reproductive health, ideal family forms, and the expected life course.

Implementation of a journal prototype for pregnant and parenting adolescents

Teenage pregnancy and childbearing remain pressing public health issues that have garnered attention from public health officials and social services agencies. This paper reports on the initial implementation and formative evaluation of a journaling program used as a means of communicating health information to pregnant and parenting adolescents (young women age 15-19) while also providing participants with a means of self-expression. The journaling prototype was implemented in a community-based agency in the Midwest by Family Support Specialists (FSSs) who made home visits on a monthly basis to assist pregnant and parenting adolescents (n=52) with successful family planning and public health education. A mixed method approach of qualitative (analysis of journals, field notes, and responses of semi-structured interviews with FSSs) and quantitative (questionnaires from pregnant and parenting adolescent respondents) data with purposive sampling was employed to evaluate the implementation of the journaling intervention. Twenty of the 52 study participants were pregnant when the journaling intervention was implemented, while 32 were not pregnant, but recently had a child and were currently parenting. Two core themes emerged from analysis of the data after the implementation of the journals: (1) usefulness of the journal and responsiveness to participants information needs and (2) functionality challenges. The results offer practical starting points to tailor the implementation of journaling in other contexts. Further, areas for improvement emerged regarding the distribution timeline for the journal and the content of the journal itself. As such, we discuss the lessons learned through this collaborative project and suggest opportunities for future phases of the journal intervention.

'Where Are All the Men?' A Post-Structural Feminist Analysis of a University's Sexual Health Seminar.

Set against the background of efforts to promote sexuality education and sexual health in a university setting, this paper focuses on a sexual health seminar offered at a midwestern US university. Using a post-structural feminist framework, we analysed discourses from qualitative surveys, newspaper coverage and participant observation. We argue that the framing of the seminar posed an obstacle to receiving health care, altercasted women in disempowering roles and failed to acknowledge mens voices. It is important to address entrenched gender biases, power imbalances and assumptions that undermine students engagement with sexual health education and access to services. Based on this analysis, we developed recommendations for sexuality education of university students informed by feminist understandings of health.

Informing or Exploiting? Public Reponses to Giuliana Rancic’s Health Narrative

ABSTRACT Popular entertainment journalist Giuliana Rancic has shared her struggles with pregnancy loss, infertility, and breast cancer in an array of public forums. In this study, we analyzed online comments responding to public discourses surrounding Rancic’s revelations, including her miscarriage and fertility treatments, her breast cancer diagnosis, and her decision to undergo a double mastectomy. Our goal was to explore how the public framed Rancic’s health challenges. Using a narrative lens, we argue that online comments reveal the tensions that celebrities like Rancic must manage as they contend with public scrutiny of their stories. Online commenters in this study framed Rancic’s narrative as a privileged vantage point in which she exploited her health struggles for personal and financial gain. Our analysis of these comments also demonstrates how Rancic’s narrative exists in concert with other discourses that challenge and disrupt her own account of events. The examination of these mediated discourses has implications for understanding the role of celebrity experiences in personal and public conversations about health.

The Influence of Everyday Interpersonal Communication on the Medical Encounter: An Extension of Street’s Ecological Model

ABSTRACT Street’s ecological model has shaped the research-examining communication during medical encounters for over a decade. Although the model accounts for the variety of contexts that shape the conversations in which patients and health-care providers engage, the model does not adequately address the way that everyday conversations about health carry over into patient–provider interactions. In this essay, we propose an extension of Street’s model that adds the context of everyday communication about health as a contributing factor in the medical encounter. We support the need for this extension by discussing research that points to the ways these conversations with our social network influence communication during the medical encounter and propose new areas for research based on this extension.

Communicating to promote informed decisions in the context of early pregnancy loss

OBJECTIVEnTo evaluate residents ability to engage standardized patients in informed decision making during a pregnancy loss scenario.nnnMETHODSnForty patient encounters between interns and standardized patients were coded to assess informed decision-making practices, exploration of unexpressed concerns, and support provision.nnnRESULTSnInterns engaged in minimum informed decision making but did not address all of the communicative elements necessary for informed decisions, and most elements were only partially addressed. Patients in this study did not receive information about all management options, their concerns were not addressed, and there was limited support communicated for their decision.nnnCONCLUSIONnThis study offers an initial assessment of a communicative approach to evaluate and improve decision making during early pregnancy loss. A comprehensive approach to making informed decisions must include discussion of all management options, exploration of patient preferences and concerns, and support for the patients decision.nnnPRACTICE IMPLICATIONSnPhysicians could benefit from communication skills training to communicate more effectively with patients to help them make more informed decisions.

Development of a patient-centric food allergy research program: A model for action

Attention to patient perspectives on healthcare and disease burden is the guiding principle of patient-centered outcomes research (1) and is an approach increasingly employed by researchers in allergic disease settings, such as asthma (2) and allergic rhinosinusitis (3) and urticaria (4). Because of the all-encompassing impact of food allergies on daily living, including social and economic effects, the food allergy context is especially suited for an approach to research designed to account for the lived experiences of food allergic patients and their families. This article is protected by copyright. All rights reserved.

Exploring societal-level privacy rules for talking about miscarriage:

Communication privacy management (CPM) theory posits that culturally specific understandings of privacy guide how people manage private information in everyday conversations. We use the context of miscarriage to demonstrate how societal-level expectations about (in)appropriate topics of talk converge with micro-level decisions about privacy rules and privacy boundary management. More specifically, we explore how people’s perceptions of broad social rules about the topic of miscarriage influence their disclosure decisions. Based on interviews with 20 couples who have experienced pregnancy loss, we examined how couples described miscarriage as a topic that is bound by societal-level expectations about whether and how this subject should be discussed in interpersonal conversations. Participants reflected on their perceptions of societal-level privacy rules for protecting information about their miscarriage experiences and described how these rules affected their own privacy management decisions. We discuss these findings in terms of CPM’s theoretical tools for linking macro-level discourses to everyday talk.