On Witnessing the Precipice between Life and Death.

In the context of hospital intensive care units, lives often hang in tenuous balance among potential healing, continuing survival, and death. Caretakers and loved ones, both family and friends, who are present to accompany and lend support to the stricken individuals are witnesses to suffering that embodies pain, discomfort, and prolonged uncertainty. My experiences throughout a concentrated period of being present in three, overlapping situations of people in the liminal space of the ICU are described. This essay explores the process of witnessing such suffering as both moral and communicative, sensory and emotive, privileged and responsibility-laden. Interpersonal, public, and intrapersonal aspects of witnessing are considered.

Challenging integration: clinicians' perspectives of communicating collaboration in a center for integrative medicine.

A shift has occurred in the provision of health care to include a focus not just on biology and disease but also on the whole person, preventative care, and an array of healing modalities based on systems of beliefs and values not typically included within biomedical practice. This approach to health care, termed integrative medicine (IM), blends biomedicine with a broader understanding of patients and their illnesses, including elements of mind, body, and spirit that may be contributing to an ailment. While the use of integrative medicine has increased and centers for integrative medicine have proliferated within conventional health care organizations, distinct tensions arise from this amalgamation. The tensions between IM and biomedical clinicians often center on their differing training and philosophies, as well as on a larger system of health care that privileges biomedicine. As a result, this research is designed to explore the challenges IM clinicians face in collaborating with conventional practitioners to provide patient care. Analysis of interviews with 14 clinicians at one center for integrative medicine revealed four specific challenges they face in their attempt to co-practice IM with conventional medicine. The four challenges include (a) challenges to collaboration, (b) challenges to legitimacy, (c) challenges to consistency, and (d) challenges to unification. Future research should investigate the ways in which these challenges can be addressed so that collaboration throughout the system is facilitated. The professional training of clinicians, the structuring and institutionalization of integrative medicine, and enhanced systems for communicating patient information all play a significant role in this transformation.

Roads Less Traveled: Finding a Path to Using Complementary and Alternative Medicine.

An increasing number of health seekers in the United States are looking outside conventional medicine to address their health needs. It is estimated that in the United States, 38% of adults use complementary and alternative medicine (CAM). Extant research characterizes CAM users as a unified homogeneous group, with little understanding of the differences among them in terms of attitudes toward body, wellness, disease, and pivotal aspects of their personal histories. In this article, we seek to better understand the nuances of who uses CAM and why, using the following questions: How do people communicate their life stories that explain their decision to use CAM? How do the life stories enable us to understand the similarities and differences among CAM users? Based on analysis of the narratives of 18 individuals, three clusters or types of CAM users emerged: natives, immigrants, and tourists. In an effort to push our analysis further, we theorized three dimensions that help to explain CAM users' objectives, motives, and resultant sense of empowerment. Together, these dimensions comprise The Pathfinder Model of CAM Usage. The Pathfinder Model can be useful to clarify self-understanding among CAM users themselves, as well as for conventional and alternative practitioners, as they establish a working relationship and communicate with their patients during medical encounters. Understanding the path of the health seeker can help influence the quality of the relationship and the communicative strategies providers use to educate and influence.

Trailblazing healthcare: institutionalizing and integrating complementary medicine.

OBJECTIVES: This study examines three integrative health centers to understand their (1) historical development, organizational goals, and modalities, (2) the processes and challenges of integrating complementary and allopathic medicine, while encouraging staff collaboration, and (3) how each center becomes institutionalized within their community. METHODS: We focus on three organizational case studies that reflect varying forms of integrative health care practices in three U.S. cities. Participant-observation and in-depth interviews with center directors were analyzed qualitatively. RESULTS: Important patterns found within the three cases are (1) the critical role of visionary biomedical practitioners who bridge complementary and allopathic practices, (2) communicating integration internally through team interaction, and (3) communicating integration externally through spatial location, naming, and community outreach. CONCLUSION: IM centers continue to blaze new trails toward mainstream access and acceptance by gathering evidence for IM, encouraging team collaboration within organizational contexts, constructing organizational identity, and negotiating insurance reimbursements. PRACTICE IMPLICATIONS: IM is not the enactment of specific modalities, but rather a philosophy of healing. Though scheduling conflicts, skepticism, and insurance coverage may be obstacles toward IM, collaboration among specialists and with patients should be the ultimate goal.

Rural food insecurity in the United States as an overlooked site of struggle in health communication.

This article indicates the need for health communication scholars to attend to the growing national problem of rural food insecurity. A review of the health communication literature reveals that food insecurity and rural health overall are research issues that have been overlooked. Using the Culture-Centered Approach ( Dutta, 2008 ), while simultaneously searching for community assets as well as problems, we explore aspects of rural residents' food environments, culture, and institutional structures that empower and constrain their communities. Twelve focus groups (n = 86), segmented by race/ethnicity, were conducted in rural central Texas. Results were analyzed using grounded theory methodology. Our findings outline problems and personal obstacles described by participants, as well as creative solutions and coping mechanisms illustrative of individual agency and social capital inherent in their rural culture. We conclude by providing suggestions for future research that will aid health communication scholars to further the conversation on rural food insecurity.

Understanding risk communication through patient narratives about complex antithrombotic therapies.

The purpose of this study was to explore how patients use narratives to create coherent understandings of risks associated with complex antithrombotic therapies. We led four focus groups consisting of patients older than 65 years of age who had a diagnosis of cardiovascular disease and were using a prescription for cardioprotective agents, such as aspirin, anticoagulants, and/or antiplatelets. The participants' stories were retrospective accounts about physician and patient interactions and adverse events organized in the plot structure of a trial-and-error story. The trial-and-error narrative structure emphasizes patients' idiosyncrasies and reasons why they expect to experience adverse events from changes in treatment. Any fears that they might have had about these risks were mitigated by physician expertise, patient responsibility, and medical technology. Patients who expressed concern about not having sufficient access to medical expertise (e.g., physicians, laboratory tests) seemed less willing to accept risks. The trial-and-error risk narratives helped patients deal with ambiguity and uncertainty about the outcomes of their therapies, and revealed patients' orientations to the risks they faced.

A qualitative analysis of decision-making for total knee replacement in patients with osteoarthritis.

OBJECTIVE: Variation in the utilization of total knee arthroplasty (TKA) for patients with osteoarthritis has been well documented. Conceivably, patient preferences may play a major role in these differences; however, this has not been adequately assessed. The purpose of this study was to conduct a qualitative analysis of decision-making factors influencing preferences for TKA in patients with knee osteoarthritis. METHODS: We conducted 6 focus groups of patients with knee osteoarthritis from diverse ethnic backgrounds attending primary care clinics affiliated to the largest private outpatient institution in Houston, TX. All groups were lead by race-concordant facilitators. The group discussions were centered on factors considered to be important in the decision-making for TKA. Thematic analysis was conducted, using a grounded theory approach aided by qualitative software. RESULTS: Several themes emerged from the groups' discussions. Positive and negative personal experiences played a major role in decision-making. Generally, participants had good expectations about improved function and quality of life, but a number of fears were identified, the most prevalent being fear of a lengthy recovery, followed by fear of complications and of anesthesia. Additional emerging themes included trust in surgeon, financial concerns, and worries about general health. CONCLUSIONS: The attitudes and beliefs of patients with knee osteoarthritis about TKA are largely based on personal experiences, expectations, and fears, and they are largely influenced by their close social environment. These findings emphasize the need for open doctor-patient communication around individual experiences to achieve satisfactory shared decision-making for TKA.

"Una persona derechita (staying right in the mind)": perceptions of Spanish-speaking Mexican American older adults in South Texas colonias.

PURPOSE: This study describes the perceptions of brain health among older Spanish-speaking Mexican Americans who reside in colonia areas of the Lower Rio Grande Valley of Texas. DESIGN AND METHODS: In 2007, 33 Mexican American older adults (9 men and 24 women) were recruited by promotoras (community health workers) from clusters of colonias in Hidalgo County to participate in focus group discussions conducted in Spanish. After participants completed a 19-item questionnaire (in Spanish), a bilingual and bicultural researcher from the community, trained as a moderator, conducted 4 focus groups using a semistructured interview guide, culturally modified with the assistance of promotoras. All discussions were audio recorded; audio recordings were transcribed verbatim in Spanish and then translated into English. Analyses were conducted in English. RESULTS: Almost 85% had less than a high school education and 100% reported a household income less than $20,000/year. Groups attached cultural meaning to aging well. The idea of "staying straight in the mind" resonated as a depiction of brain health. Participants also mentioned the types of activities they could do to stay "right in the mind." IMPLICATIONS: Particular attention must be focused on development of programs that provide satisfying culturally appropriate activities for older participants and the delivery of health messages that take into consideration culture and language.

Face-to-face interaction compared with video watching on use of physical activity in peripheral arterial disease: a pilot trial.

Few studies have defined the association of physician-patient communication with physical activity levels in patients with peripheral arterial disease. We hypothesized that a face-to-face intervention versus video watching would improve physical activity levels in patients with peripheral arterial disease. The authors conducted a randomized trial involving 2 interventions. The face-to-face intervention included a brief dialogue with patients to understand their perceptions of peripheral arterial disease and importance of walking. The comparison group watched a video that included an overview of peripheral arterial disease. The primary outcome was changed from baseline to follow-up in levels of physical activity. Fifty-one patients with peripheral arterial disease were randomized. There were no statistically significant differences between the 2 groups in reported activity level or walking ability at 12 weeks. For within group changes, the patients in the video-watching group improved their walking speed (8.5%; SD = 4.1; P = .05). Patients with peripheral arterial disease may benefit from the use of an educational video to increase the use of unsupervised physical activity. Further research is needed to identify interventions that can increase the use of unsupervised physical activity in this population.

Characterizing explanatory models of illness in healthcare: development and validation of the CONNECT instrument.

OBJECTIVE: A growing body of qualitative and quantitative research suggests that individual patients and physicians often have differing perspectives, or 'explanatory models,' regarding the patient's health condition or illness. Discordance between explanatory models may lead to difficulties in communication and poor disease outcomes. However, due to a lack of tools to systematically measure concordance in patient and physician explanatory models, a large-scale study of explanatory models of illness has not been previously possible. The objective of this project was to develop and pilot-test a survey-based tool (the CONNECT Instrument) that measures salient aspects of explanatory models of illness. METHODS: We conducted a multi-method survey development project that included qualitative and quantitative item development, refinement, pilot testing, and psychometric evaluation. We evaluated the instrument in two unique, consecutive cohorts of primary care patients in a variety of private and public settings in Houston, TX. We also used the instrument to examine concordance between patient and physician explanatory models in the second cohort. RESULTS: The final version of the CONNECT Instrument contains nineteen items that focus on six dimensions of explanatory models. Cronbach alphas ranged from 0.65 to 0.89 for the six CONNECT dimensions. The instrument demonstrated evidence of criterion-related validity when individual CONNECT dimension scores were compared with scores from previously published instruments, and demonstrated expected differences between patients 'and physicians' explanatory models of illness. CONCLUSION: The CONNECT instrument is a tool with good psychometric properties that enables researchers to measure important aspects of patients 'and physicians' explanatory models of illness. Our continuing work will focus on gathering additional validity evidence and evaluating associations between explanatory model concordance and health outcomes. PRACTICE IMPLICATIONS: The CONNECT instrument can be used to improve quality in clinical practice and medical education by measuring an important intermediate outcome in the chain of factors leading to patient trust, satisfaction, and adherence.

'Screwed for life': examining identification and division in addiction narratives.

In this study, we investigate the use of narrative in online conversations among persons suffering from chronic opiate addiction and evaluate both its positive and negative uses. Illness narratives, as argued by sociologist Arthur Frank and psychiatrist/medical anthropologist Arthur Kleinman, enable patients to give order to life experiences and receive support from others. We wished to explore under what circumstances online support coalesces and breaks apart. The narratives we examined exemplify two topics frequently discussed on the message board: the recovery process and what it means to be 'clean'. To better understand these narratives from a theoretically based approach, we used the work of rhetorical theorist Kenneth Burke. Burke's description of two human motives, suffering and perfection, led us to an understanding of how unification and division happened within the online community. We found that the recovery narrative primarily embodied the author's suffering and, consequently, received support from other members of the message board. The second narrative centered on what it means to be 'clean' through a discussion of the author's desire to court temptation, revealing what Burke calls the rotten nature of perfection. As a result, the author of the narrative provoked disagreements and did not receive support.

"Keep on truckin'" or "It's got you in this little vacuum": race-based perceptions in decision-making for total knee arthroplasty.

OBJECTIVE: Ethnic variation in the utilization of total knee arthroplasty (TKA) has been well documented, with African Americans showing significantly lower utilization rates. These differences are not explained by the prevalence or severity of knee osteoarthritis (OA). Patient preferences may contribute to differences in utilization since TKA is an elective surgery. We conducted a qualitative analysis of decision-making factors influencing ethnic preferences for TKA in patients with knee OA. METHODS: Six focus group discussions were conducted with participants being divided according to race: 2 African American groups, 2 Hispanic groups, and 2 Caucasian groups. Participants were all patients with knee OA attending the same treatment facility. A total of 37 patients participated, 14 male and 23 female. Group discussions were led by a race-concordant facilitator. A grounded theory approach was used to analyze verbatim transcripts of the discussions. RESULTS: Thirty distinct categories of information emerged in the analysis of the data. Four of these categories showed variation among ethnic groups and included explanations of illness, changes in lifestyle, trust and skepticism, and paying for surgery. CONCLUSION: Patient attitudes and beliefs about TKA vary among ethnic groups. Differences in explanations of illness, changes in lifestyle, trust and skepticism, and paying for surgery are topics for discussion in the medical encounter. There is a need for open doctor-patient communication around individual experiences and beliefs in an effort to enhance decision-making for TKA.

Racial differences in doctors' information-giving and patients' participation.

BACKGROUND: Whether doctor-patient communication differs by race was investigated in patients with pulmonary nodules or lung cancer. METHODS: Eligible patients (n = 137) had pulmonary nodules or lung cancer and were seen in thoracic surgery or oncology clinics for initial treatment recommendations at a large southern Veterans Affairs Medical Center from 2001-2004. Doctor-patient consultations were audiotaped. Audiotapes were transcribed, unitized into utterances, and utterances were coded as doctors' information-giving or patients' and companions' active participation (asking questions, expressing concerns, and making assertions). Data were compared by patient race and doctor-patient racial concordance using t-tests or chi-square tests as appropriate. Mixed linear regression was used to determine the independent predictors of doctor's information-giving after controlling for clustering of patients by doctor. RESULTS: Patient age, gender, marital status, clinical site, and health status were similar by race (P > .20), but black patients were somewhat less likely to have education beyond high school and to bring a companion to the visit (P = .06) than white patients. Black patients and their companions received significantly less information from doctors (49.3 vs. 87.3 mean utterances; P < .001) and produced significantly fewer active participation utterances (21.4 vs. 37.2; P < .001) than white patients. In mixed regression analyses, after adjusting for patients' and companions' participation, clustering by doctor, and other factors, race no longer predicted information-giving (P = .54). Patients in racially discordant interactions received significantly less information and were significantly less active participants (P < .001) when compared with patients in racially concordant interactions, and after controlling for patients' participation and other factors using mixed regression, racial discordance did not predict information-giving. CONCLUSIONS: The results indicate a pattern of communication that may perpetuate patient passivity and limited information exchange where black patients and patients in discordant interactions do less to prompt doctors for information and doctors in turn provide less information to these patients.

The complexity of patient participation: lessons learned from patients' illness narratives.

OBJECTIVE: To describe the meaning of active participation from the patient's perspective. METHODS: We used a narrative framework to analyze transcripts generated from 16 qualitative open-ended, semi-structured interviews with primary care patients in Houston, Texas. RESULTS: Patients' illness narratives reflected several themes related to patient participation. These included patients' perspectives of illness (i.e., how central the illness is in the patient's overall life story and how changeable the patient believes their illness to be) and aspects of actions pursued in the context of patients' illness narratives (i.e., the degree of illness-related activity that a patient engages in and the role of partnership with the patient's physician in health decision making and illness management). The relationships among these themes explained a limited number of distinct illness-management strategies pursued by patients. CONCLUSION: Our findings revealed a level of complexity to patients' healthcare participation that has not been previously described. Patients' illness-management strategies were explained by four thematic story elements in dynamic interplay with unique variations for each individual. Further research is needed to explore how these story elements influence communication between patients and physicians. PRACTICE IMPLICATIONS: By understanding the nature of and relationships between the thematic elements in patients' illness narratives, practitioners will be able to better inform their negotiations with patients regarding participation in healthcare.

A qualitative approach to developing a patient-derived intervention to increase exercise in peripheral arterial disease.

OBJECTIVE: In designing a patient-physician communication intervention, we explored patients' perceptions of the role of exercise in the treatment of peripheral arterial disease (PAD). METHODS: We conducted qualitative interviews (5 focus groups and 13 one-on-one interviews) involving 35 patients with known PAD. We analyzed verbatim transcripts for significant dimensions of patients' explanatory models of PAD and exercise, perceptions of patient-physician communication, and other factors that would increase their participation in exercise (ie, walking). We used Atlas.ti software to facilitate data sorting and storage. RESULTS: Based on 30 emerging codes, we identified primary themes that constitute patients' perceptions of (1) the causes and outcomes of PAD, (2) the importance of patient-physician communication, (3) the impact of PAD on their lives, and (4) the factors that would lead to their exercise participation to treat PAD. From this information, our conceptual model focuses on an intervention plan that includes addressing the known causes of PAD, the patient's behavior prior to the diagnosis of PAD, and the factors that shape a patient's overall assessment of the role of exercise for PAD. An integral aspect of our model is the impact of the physician's perception of PAD coupled with the patient's perception in order to shape the intervention-a partnership between the physician and the patient-that we posit is likely to lead to behavior change. CONCLUSION: Based on qualitative data analysis, we developed a patient-derived model to influence exercise participation. This model highlights those factors most likely to influence behavior change in patients with PAD. The next step is to enact and assess an intervention based on this model, to increase physical activity in patients with PAD.

Racial differences in trust and lung cancer patients' perceptions of physician communication.

PURPOSE: Black patients report lower trust in physicians than white patients, but this difference is poorly studied. We examined whether racial differences in patient trust are associated with physician-patient communication about lung cancer treatment. PATIENTS AND METHODS: Data were obtained for 103 patients (22% black and 78% white) visiting thoracic surgery or oncology clinics in a large Southern Veterans Affairs hospital for initial treatment recommendation for suspicious pulmonary nodules or lung cancer. Questionnaires were used to determine patients' perceptions of the quality of the physicians' communication and were used to assess patients' previsit and postvisit trust in physician and trust in health care system. Patients responded on a 10-point scale. RESULTS: Previsit trust in physician was statistically similar in black and white patients (mean score, 8.2 v 8.3, respectively; P = .80), but black patients had lower postvisit trust in physician than white patients (8.0 v 9.3, respectively; P = .02). Black patients, compared with white patients, judged the physicians' communication as less informative (7.3 v 8.5, respectively; P = .03), less supportive (8.1 v 9.3, respectively; P = .03), and less partnering (6.4 v 8.2, respectively; P = .001). In mixed linear regression analysis, controlling for clustering of patients by physician, patients' perceptions of physicians' communication were statistically significant (P < .005) predictors of postvisit trust, although patient race, previsit trust, and patient and visit characteristics were not significant (P > .05) predictors. CONCLUSION: Perceptions that physician communication was less supportive, less partnering, and less informative accounted for black patients' lower trust in physicians. Our findings raise concern that black patients may have lower trust in their physicians in part because of poorer physician-patient communication.

'A little bitty spot and I'm a big man': patients' perspectives on refusing diagnosis or treatment for lung cancer.

Patient refusal of physicians' recommendations may partially account for variations in lung cancer treatment affecting survival. Reasons for refusal have not been well researched, and patients who refuse are often labeled derogatorily as irrational or enigmatically non-compliant. This study explored why patients refused recommendations for further diagnosis or treatment of lung cancer. We conducted in-depth interviews with nine patients, identified and recruited over a 2-year period, with documented refusal of doctors' recommendations. Recruiting was hampered by deaths, logistics, and refusal to participate. Questions focused on participants' understanding of disease, medical recommendations, and perceptions of decision-making. Transcripts were analyzed using a grounded theory approach. Participants emphasized self-efficacy, minimizing threat, fatalism or faith, and distrust of medical authority; explanations were often multi-dimensional. Comments included complaints about communication with physicians, health system discontinuities, and impact of social support. Explanations of participants' decisions reflected several ways of coping with an undesirable situation, including strategies for reducing, sustaining, and increasing uncertainty. Problematic Integration Theory helps to explain patients' difficulties in managing uncertainty when assessments of disease outcomes and treatment recommendations diverge. Implications for clinical communication include increasing trust while delivering bad news, understanding the source of resistance to recommendations, and discussing palliative care.

Associations between the impact of terrorism and health perceptions of patients.

OBJECTIVE: Previous studies have demonstrated the effects of the September 11th 2001 terrorist attacks on anxiety and anxiety-related conditions in Americans. However, data regarding associations between the attacks and patients' health perceptions are lacking. The objective of this study was to explore associations between the personal impact of the September 11th attacks and patients' perceptions of health and illness. METHOD: We performed a cross-sectional survey of 303 adult African-American, Caucasian, and Hispanic patients at primary care clinics in Houston, Texas. Data were collected between October 15, 2001 and March 1, 2002. We developed items to measure the impact of the September 11th attacks and patients' quality of life. Previously validated scales were used to measure health status, health locus of control, preferences regarding the patient-physician relationship, and patients' explanatory models of illness. RESULTS: Twenty-two percent of patients reported no impact from the attacks, 41% reported mildly negative impact, 22% reported moderately negative impact, and 15% reported extremely negative impact in their lives. In multivariate analysis, demographic characteristics were not associated with impact from the attacks. However, patients who perceived a more external locus of control with respect to health and patients who reported greater meaning of illness in their lives also reported more negative impact from the September 11th attacks. CONCLUSIONS: The September 11th terrorist attacks had at least a somewhat negative impact for a majority of patients far from the site of the nearest attack, and regardless of their demographic backgrounds. The amount of negative impact that patients perceived as a result of the terrorist attacks correlates with certain illness perceptions, including an external health locus of control and a perception of greater meaning of illness in one's life. Such correlations may indicate an effect of terrorism on patients' illness behaviors. Further research is needed to better understand effects of the threat of terrorism on the general health and illness behaviors of patients.