Intersubjectivity and language in the clinical encounter

There is a critical need for an updated, more comprehensive, and integrated conceptual model to help health care providers, patients, and consumers, as well as researchers using this theoretical model, to better understand health information, communication, and information seeking of patients and consumers. My colleagues and I have developed such a model, based on an ongoing research agenda and empirical data provided by pilot studies in the area of breast cancer. However, this expanded model is now developed in such a manner that based on deliberations with experts in other clinical disciplines such as arthritis and diabetes, it is likely it can at least be tested with patients diagnosed and consumers at risk for these diseases. A situation recently unfolded in my neighbourhood which vividly illustrates the need for this conceptual model. It also illustrates how the model is useful beyond the area of breast cancer information. A 51-year-old, college-educated, married, mother of seven children sat down to read a popular women's magazine for a few minutes while she waited for her physician husband to come home from work. As she scanned the magazine she came across an article about the warning signs of ovarian cancer. As she read the article, she became engrossed in its details because she recognized the signs and symptoms discussed and realized she had experienced each of them. Her pulse raced as she began to realize that what she had attributed to perhaps the aging process and a hectic lifestyle could in reality be ovarian cancer. When her husband came home they discussed the issue, and the next day she made an appointment with her personal physician. A number of tests were ordered, a large abdominal mass was found, and surgery was ordered. This woman has terminal ovarian cancer. In a span of 10 days, her life and that of her family has changed dramatically based on her reading of a journal that prompted her to seek medical care. This is not a unique experience; such scenarios likely occur with hundreds, if not thousands, of individuals around the globe. However, as a researcher who examines health information use, especially as it relates to health care decision-making, I noted many implications from this experience that can inform health communication research. First, health information is not always intentionally sought, yet it may be used and have profound consequences. This requires consideration of the existence, role, and importance of 'passive' receipt of information vs. 'active' information seeking. My neighbour casually came across important information in a magazine written for the general public. The recent professional emphasis on 'Health Information Seeking Behaviour' must take into account that some individuals, who have no intent of seeking health information, come across such information as they go about their activities of daily living. Second, the information received came from traditional print media, not the 'new media,' such as the world wide web, that are so frequently cited as playing a major role in health information. This underscores the need for a comprehensive view of health information sources that recognizes not only 'high tech' or 'new media' sources, but also those that are traditional and easily accessible. Third, in this case an educated, economically upper class woman received her health information through a medium aimed at women of all educational and socio-economic classes. Given the current emphasis in the health care professions on targeting 'at risk' populations, it is important to recognize that while personal variables such as socio-economic status play a role in information use, contextual issues, such as relaxing with a popular magazine vs. accessing a medical journal or website, are also important influences. In 2001, together with colleagues Patrick and Kruse, I published an article titled 'The natural history of the use of healthcare information by women with breast cancer: a conceptual model.'1 The objective of the paper was to fill a significant knowledge gap, as a review of the literature at that time revealed a paucity of empirical studies using a strong conceptual framework or model that could provide the vital theoretical underpinnings for studies of health information use and communication, especially in understanding patient decision-making, and provide a context in which to analyse and interpret empirical data. More is known today, because of the efforts of many groups including the journal Health Expectations2,3 and in the United States, the National Cancer Institute's 'Health Information Service,'4–6 but far more work is needed. Noting the lack of a strong conceptual model using a broad spectrum of health, we developed the model first described in that 2001 paper. The first conceptual model1 illustrated the theoretical underpinnings of our approach and provides a context in which to analyse and interpret the results. In fact the National Cancer Institute's 'Health Information Service'5 cites this model as one of three viable models of health information seeking behaviour together with those of Johnson.17 Our model depicted the interrelationships among the various personal and situational factors that comprise the patient's information environment and different phases of her use of various types of information to make decisions about her own health care. We were heavily influenced by components of the Health Belief Model (HBM),7,8 the awareness-to-adherence model of physician adoption of clinical guideline information,9 and the patient practice variation theory I published in 1993.10 In an effort to test our model first published in 1991, we collected data from a total of 121 women who had previously been diagnosed with breast cancer and consented to participate in our survey. The pilot study was approved by the University of Missouri Health Sciences Institutional Review Board. The survey was conducted with patients in the Kansas City area, Columbia and mid-Missouri, and the Newark, New Jersey, area. Following the conceptual model initially developed, there was a logical progression of answers one would expect. For example, if a woman said she was not aware of health information related to breast cancer, one would not expect her to later say that health information influenced her decisions about her personal health care. An initial data analysis indicated that the expected logical pattern was not always followed. In fact only 73 of the women surveyed followed the expected pattern, with 48 not following the pattern. In an effort to better understand this potential validity problem, we took a two-step approach. First, we conducted a focus group meeting with the staff involved in patient interviews and those who worked on model development to review and discuss the detailed notes taken during the time of the interviews. We then re-contacted a sample of these women for whom our nurse interviewer had sufficiently detailed notes regarding the women's medical situation and use of health information. What we found was that the initial model had a number of flaws. Perhaps the most notable was the explicit lack of recognition of the role that the 'passive receipt' of information played in the process. For example, like the woman in the vignette above, a number of women did not intentionally seek health information. This finding is consistent with the work of Carlsson11, who reports that 'patients actively sought information to a limited degree, but the majority of patients take an interest when cancer issues are presented in newspapers and magazines, or on radio and television. A more passive information seeking strategy was common in her study of Swedish cancer patients, especially among those with lower educational levels.11 Many women in our study also came across information while they read the newspaper, read magazines, listened to radio shows, watched television, or simply spoke with others about their cancer diagnosis and treatment. So these women initially answered that they were not aware of such information, but ultimately health information became available and was in many cases very useful. In other cases, subjects may have thought only about media as sources as health information, but did not view direct communication with their physician or nurse as a source of information. Finally, there were inconsistencies introduced by the lack of a specific time frame to recall the cancer experience; this was especially true for long-term survivors. These further investigations clarified the need for more explicit wording in the survey instrument and the related conceptual model, as well as further development of the model to take into account both active and passive receipt of health information. This is now detailed in the expanded conceptual model depicted on page 4. As a further test, we conducted yet another survey using the model's revised instrument with 14 patients; consistently the logical patterns one would expect were found in all cases. Finally, consistent with the approaches taken by Cowin12 and Ouitmet et al.,13 we convened a focus group of experts in health communications, health services research, biostatistics, and nursing who in reviewing the data along with the supporting documentation determined that the revised model has both face and internal validity. Our experience shows the necessity of further work in the development, dissemination, and testing of conceptual models that assist in the understanding of this important development in the history and evolution of the role of patients in their own care. Additionally, we also need to better understand the nature, type, source, and use of health information by healthy consumers, including those with a known risk for various diseases, given our advances in knowledge of genetics and the role of family history in disease. Thus, I propose that we include but differentiate 'patients' and 'consumers' in any such models (Fig. 1). Expanded conceptual model of health information seeking behaviors and the use of information for health care decisions. Johnson14 cites Summers et al.,15 who in reporting about the critical nature of cancer-related information seeking, describe information seeking as 'the result of a complex set of interactions among multiple variables each with different capabilities to predict information use'15 and propose the need for good theory that promotes deeper understanding of the issues involved.14 Bower and Bilbody16 write that 'models are abstract representations of complex areas' and cite the original work of Siegler and Osmond,17 who describe models as 'inventions of the human mind to place facts, events and theories in an orderly manner. As such, they help place empirical data, research evidence, and systematic reviews in a broad perspective and 'can assist in the interpretation of evidence in a policy context … which may provide a more solid bridge between evidence and the policy context.'16 However, they also add that conceptual models must be continually evaluated; consequently, the proposed revised model is presented in this paper. A number of cautions are in order to fully understand this model. The model is indeed derived from the experience and reports of patients themselves. As such, it is consistent with a 'patient-centred' view of care, and may be useful in placing research findings in a broad patient perspective. However, when applied in an individual patient clinical setting, caution must be taken consistent with Barnett et al.,18 who write that a 'patient-centred approach must involve tailoring information to individual patient requirement' as 'it is difficult to predict how much information patients feel they need.' While it is widely recognized that appropriate information can increase knowledge, reduce anxiety and distress, reduce decisional conflict, and increase adherence to various regimens,15,16,19,20 many patients do not want any health information other than that provided by their personal physician. Friis et al.21 report this is more likely in the elderly, but it may also occur with other types of patients. For example, most studies focus on outpatients and little is known about the information needs of severely ill cancer patients treated in hospital.21 Therefore, the revised model takes these situations into account as some patients/consumers may decide not to access information. While the traditional medical perspective may not recognize such a view, a 'patient-centred' model must recognize patient needs and wants even when they are contrary to what the professional may view as necessary or helpful. Despite that fact that 'being informed and seeking information are discussed as society's expectations of today's cancer patient,'21 it may be in the best interests of a given patient to not seek information, 'as a strategy to maintain hope.' This also was identified in our study by at least one participant. The next step is more vigorous testing of the proposed model in various populations and cultures. This will provide not only important data for the model's enhancement, but also help us to better understand the current status of the use of health information by both patients and consumers, and clarify some of the confusion found in the current literature. For example, some articles point to the tremendous growth in health information and especially internet-based information,22 while others report that at least in the United States, as of 2001, only one-half of adults 'place a high priority on seeking health information.'23 Finally, Tu and Hargraves24 report that 'contrary to [the] popular belief that Americans avidly seek health information – especially on the internet – a majority of Americans in 2001 sought no information about health concerns, according to a Center for Health System Change study.' Interestingly, this study found that, like the woman in the above vignette, 'instead of surfing the internet, the 38% of Americans who did obtain health information relied more often on traditional sources such as books or magazines.' However, they report that level of education was shown to explain a large difference in health seeking information. While popular opinion and the reality of health information use are not yet consistent, it is anticipated that over time this situation will change as information increases, health awareness is heightened, literacy improves, education levels rise, and the consumer movement continues to evolve and mature. More rigorous studies using a model such as the one proposed here are needed as we attempt, as health professionals, to better understand patient and consumer desires for health information, how they will change over time, and how we must modify and develop new and more appropriate types of information that patients will use and find helpful as they face an illness, or simply wish to remain proactive in maintaining health.

Background and Aim: In today’s digital world, people with type 1 and 2 diabetes turn to peers on social media to exchange information and support. However, little is known about what the online sharing of diabetes-related information implies for the clinical encounter. This study examines how information that stems from social media is discussed in clinical encounters between healthcare professionals (HCPs) and people with diabetes (PWD) . Methods: We conducted semi-structured interviews with 25 PWD aged 22-76 (type 1: n= 17, type 2: n=8) and HCPs (nurses n=9, medical doctors n=7, dieticians n=3) . The participants were recruited from the diabetes outpatient care setting in Denmark. Two researchers independently developed a thematic coding framework that was compared, revised, and then applied to analyze each interview. Subsequently, overarching themes were identified across the whole data set. Results: The first theme suggests that HCPs tend to have a ‘blind spot’ towards information that stems from social media: Most HCPs have not asked whether PWD retrieve information from social media and most PWD present information that is accessed on social media without naming their source. The second theme reflects that clinical dialogues about online information rest upon trustful relationships: PWD find online peer exchanges valuable and request for HCPs to acknowledge this. Still, PWD navigate large amounts of information and treatment advice online, and while PWD may seek to discuss their information in clinical encounters, initiating these dialogues is sensitive to the reactions of HCPs. Discussion: The results suggest that HCPs should encourage curious dialogues about how PWD retrieve diabetes-related information. This serves for HCPs to learn what PWD gain from peers online and for HCPs to be able to offer their expertise to support PWD who are navigating large flows of information and advice online. Disclosure E.M.Kjærulff: None. M.A.Nexo: None. U.Bjerre-christensen: None. H.Langstrup: None. Funding Innovation Fund Denmark (Ref.no. 9163-00016B)

INTRODUCTION: Health care professionals (HCPs) often view obesity in pregnancy as a condition associated with numerous adverse clinical outcomes and procedural difficulties. In contrast, patients characterize their challenges encountered because of stigma, their desire for a normal pregnancy, and may feel weight is overemphasized. The study's objective was to explore stories of patients and HCPs in tandem, in order to understand communication challenges within obesity-in-pregnancy clinical encounters. METHODS: Employing narrative inquiry, we conducted in-depth interviews with 16 patients and 19 HCPs. Stigma theory informed our research approach. Dialogical narrative analysis of interview transcripts was conducted. RESULTS: We identified five narrative tensions that contributed to communication challenges during clinical encounters. The first three tensions related to contrasting views on obesity: 1) obesity as a detriment to health versus acceptance of obesity; 2) a result of personal choice versus a result of uncontrollable circumstances; and 3) a regular pregnancy versus a high-risk diagnosis. Two further tensions related to characterizations of communication within the clinical encounter: 4) typical and problem-free versus a tremendously difficult clinical encounter; and 5) talking openly about obesity versus sidestepping the topic. How participants positioned themselves relative to prevailing societal discourses regarding obesity and being a “good” HCP/patient influenced these tensions. CONCLUSION: This study identified five narrative tensions and revealed specific areas where communication in the obesity-in-pregnancy clinical encounter is vulnerable to breaking down, accounting for the complexities in this interactive space. These findings can inform clinical practice and education and may be applicable to other clinical contexts.

Web-based interventions in the clinical encounter in fertility care: a scoping review

Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy

Given the current increase of global migration movements and its implications for healthcare
\nsystems (Carballo et al. 2017), it is important to better understand how patients with migration
\nbackground and healthcare professionals experience their shared clinical encounters and the
\nspecific factors that can influence communication and interaction between them. Here,
\nreflections on ‘culture’ and biases as well as the topics of language barriers and mutually
\nperceived problem areas have proved to be fruitful. Furthermore ethical aspects surrounding the
\nperceived issues have to be explored. If not addressed, language barriers can affect
\ncommunication and interaction in cross-cultural clinical encounters and quality of care
\nnegatively. Although the need to address language barriers is widely acknowledged, little is
\nknown about how linguistic complexities shape decision-making for or against the use of
\ninterpreter services in everyday cross-cultural encounters. Also, it is crucial to explore the
\nproblem areas patients with migration background and healthcare professionals identify, and to
\nreflect connected ethical aspects. Using an ethnographic approach, 32 migrant patients (16 of
\nAlbanian and Turkish origin, respectively) have been accompanied during their medical
\nencounters at two outpatient clinics (using participant observation and semi-structured
\ninterviews with patients and healthcare professionals). Overall, 94 interviews with patients and
\nhealthcare professionals on how they perceived communication and interaction in their crosscultural
\nclinical encounter were conducted. Perspectives of patients and physicians on their
\nshared clinical encounters were triangulated regarding the topics ‘getting-by with limited
\nlanguage proficiency’ as well as ‘difficulties and challenges’. In one case a patient’s, a physician’s
\nand the researcher’s perspective have been compared. Results show that reflecting on ‘culture’
\nand one’s own biases is an essential tool promoting insights about what can be relevant in a
\ncross-cultural clinical encounter. In the context of language barriers, the assessment of the
\nlanguage situation, the involvement of interpreters, and dealing with conversational limits are
\nimportant topics to physicians and patients shaping decision-making for or against the use of
\ninterpreter services. Furthermore, patients and physicians identified the topics of ‘patient
\nbehaviour in relation to doctors’ advice’ and ‘relationship issues’ as meaningful problem areas in
\ntheir encounters. What makes perceived issues relevant from a medical ethics perspective is that
\npotential ethical implications of perceived difficulties (e.g. regarding how shared decisionmaking
\ncan be made in the context of relationship issues or questions of responsibility in the
\ncontext of the social embeddedness of health) were not identified during clinical routine.
\nA deeper understanding of cross-cultural clinical encounters and ethical aspects of everyday
\ncross-cultural clinical routine is provided by presenting patients’ and physicians’ perspectives on
\ntheir shared encounters focusing on the interplay between ‘culture’, stance and biases, the
\ncomplexities of decision-making in the context of language barriers and difficulties and
\nchallenges that can arise in cross-cultural settings.

IntroductionSocial and healthcare professionals are daily engaged in challenging communications and most experience a sense of being unprepared and lacking proficiency. Educational resources that provide guidance in sustaining complex communication...

Patients' family relations play an important part in the provision of patient-centred cancer care, not least when healthcare professionals encounter seriously ill patients with dependent children. Little is known about how children are perceived and dealt with in clinical encounters. In this qualitative comparative study, we explore the influence of medical contexts in three Danish hospital wards, haematology, oncological gynaecology and neuro-intensive care, on communication with patients about their children. In exploring the degree to which the inclusion of children in clinical encounters is dependent on context, we took a comparative approach based on fieldwork in wards either exclusively focusing on cancer treatment or partially involved in critical phases of cancer treatment. We conducted 49 semi-structured, in-depth interviews with doctors and nurses, and 27days of participant observation. The thematic analysis was based on Bateson's conceptualisation of communication. We found that healthcare professionals' approach to children in clinical encounters and the ways in which children were positioned on each ward were influenced by aspects specific to the ward, including the diagnosis and treatments that related specifically to the patient. Our findings suggest the need to explore further the influence of medical contexts on the inclusion of children in patient communication.

'Innovative Approaches to Narratives in Health Communication' provides in-depth research studies, literature reviews, and step-by-step instructions for a variety of health communication contexts to help improve overall satisfaction and the empowerment of others. 'Innovative Approaches to Narratives in Health Communication' is intended to be used in many health-related contexts including, but not limited to, the classroom, further research, and health care professionals. While some texts focus on narratives in public communication or on a specific population (such as women’s health), this volume applies narratives in a variety of health communication contexts. 'Innovative Approaches to Narratives in Health Communication' opens with a chapter about the different types of narrative research, entertainment education, and narrative persuasion. Next, the first section includes chapters on the “human experience” and narratives. These chapters include powerful and emotional topics relating to the use of narratives in critical care, reproductive loss, video gaming and cancer narratives, and the impacts of the infant formula shortages. The second section highlights how narratives can be used in university/college-aged participants. The two chapters analyze how narratives can be applied to both the mental health of college students and those partaking in risky behaviors. The third and final section comprises chapters discussing the impacts of the COVID-19 pandemic and the use of narratives. The section begins with a chapter highlighting the “Coming age” during the pandemic and relevant research relating to narratives. The following chapters will include a discussion of the impacts of COVID-19 on black communities, and the importance of narratives with frontline workers. All of these chapters provide unique applications and examples that use narratives in current and important research. Overall, 'Innovative Approaches to Narratives in Health Communication' aims to provide a diverse audience with unique tools and perspectives to broaden our understanding and applicability of narratives in health communication contexts.

Many healthcare professionals are unaware of the necessary skills and barriers hindering interpersonal health communication. This study aimed to evaluate the healthcare professional's perception regarding health communication training's necessity, barriers, facilitators and critical skills in health communication. Data from a cross-sectional online survey in the framework of the H-Com project were utilized. The study included 691 healthcare professionals (physicians, nurses, students and allied health professionals) from seven European countries. Only 57% of participants had participated in health communication training, while 88.1% of them indicated a willingness to be trained in health communication. Nurses were more likely (OR = 1.84; 95% CI 1.16, 2.91) to have received such training, compared to physicians. Most examined communication skills, barriers and facilitators of effective communication, and perceived outcomes of successful communication were considered crucial for most participants, although physicians overall seemed to be less concerned. Most agreed perceived outcomes were improved professional-patient relations, patient and professional satisfaction, physical and psychological health amelioration and patients' trust. Nurses evaluated the importance of these communication skills and communication barriers, facilitators and outcomes higher than physicians. Physicians may underestimate the importance of communication skills more than nurses. Health communication should become an integral part of training for all health professionals.

Patient-mediated interventions to improve professional practice.

BackgroundThe number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs’ experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD).MethodA systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs’ experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes.ResultsOur comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs’ experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one’s professional approach within the clinical encounter; 2) managing one’s emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs’ work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one’s own emotions.ConclusionFew qualitative studies highlighted HCPs’ general working experiences, as they mainly focused on the patients’ experiences or HCPs’ experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs’ work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support.Trial registrationPROSPERO number: CRD42019119052.

The Health Information National Trends Survey (HINTS) was conceived during a risk communication conference in 1997, wherein attendees representing the fields of psychology, public health, health education, health behavior, journalism, and medicine encouraged the National Cancer Institute (NCI) to develop a health and cancer communication-specific population survey to track trends in American adults’ access to, need for, and use of cancer information. This call for the development of a national cancer communication survey coincided with NCI’s designation of an Extraordinary Opportunity in Cancer Communication, which allowed the NCI to support scientific research to advance the study of cancer communication. A key component of this initiative was the HINTS. Building upon the interdisciplinary recommendations of the 1997 risk communication conference, NCI developed a national survey to assess trends in health information usage over time and cancer-related communication, knowledge, attitudes, and behavior. The NCI fielded the first HINTS in 2002 and 2003, surveying 6,369 adult Americans. Subsequent surveys followed in 2005 (5,586 Americans surveyed) and 2008 (7,674 Americans surveyed). For each survey administration, a HINTS Data Users Conference is held to encourage HINTS data users to share their research findings, to build the research community, and to gather input for future survey administrations. The third HINTS Data Users Conference was held in Silver Spring, MD, in September 2009. The conference theme, “Partners in Progress,” emphasized the collaborative nature of the HINTS program. The conference included a series of oral presentations focused on the following themes: Partners, Populations, and Progress; Survey Methodology; Health Communication; and Media and Health Communication. This special issue of the Journal of Health Communication is organized according to these thematic tracks and builds upon the oral presentations, poster presentations, and group discussions of the conference. The articles included in this issue describe key findings from HINTS research using data from the three HINTS data sets to explore disparities in health communication, information access, or use of communication technologies; examine health surveillance methodology including topics such as response rates, mode effects, scale development, and sampling design; examine patient and healthcare provider communication, perceptions of quality of healthcare, the impact of communication technology on the clinical encounter, and patient centered communication; and examine the impact of media and the Internet on information seeking and cancer-related knowledge as well as exploration of group differences in use of health communication technology. Tracking the cancer-related information needs, experiences, knowledge, attitudes, and risk behaviors of the American public is critical to NCI’s strategic objectives in service of the NCI mission to reduce the cancer burden through coordinated efforts to advance fundamental cancer knowledge across the continuum from discovery to delivery. This imperative requires multidisciplinary and collaborative partnerships, which have been instrumental to the success of the HINTS program. We are grateful to the HINTS community of data and results users, and enthusiastically anticipate continued collaboration and partnership as the driving force for progress in the HINTS program. We hope that the research featured in this special issue will fortify the evidence base for developing effective cancer communication strategies and inform future work in communication science and cancer prevention and control.

This article analyzes telemedicine, the use of distant communication technologies within the context of clinical health care, and the effects it has on health communication. The main effect is that telemedicine has the capacity to substantially transform health care in both positive and negative ways and to radically modify personal face-to-face communication (Turner, 2003). This has tremendous implications for health communication scholars in that they can extend the telemedicine debate by integrating fresh insights into more acceptable approaches that will refine and humanize mediated channels of health communication. There are several key areas of telemedicine that need to be discussed (i.e., e-health services, clinical encounters, etc.), all of which are identified in this article. In addition to describing the past and current applications of telemedicine, this article provides a better understanding of unique needs, resources, problems, and opportunities germane to telemedicine services.

Cultural issues and linguistic complications in health communication