Fostering Interdisciplinary Boundary Spanning in Health Communication: A Call for a Paradigm Shift.

Scholarship in the field of health communication is broad, with interdisciplinary contributions from researchers trained in a variety of fields including communication, nursing, medicine, pharmacy, public health, and social work. In this paper, we explore the role of "health communication boundary spanners" (HCBS), individuals whose scholarly work and academic appointment reflect dual citizenship in both the communication discipline and the health professions or public health. Using a process of critical reflective inquiry, we elucidate opportunities and challenges associated with HCBS across the spectrum of health communication in order to provide guidance for individuals pursuing boundary spanning roles and those who supervise and mentor them. This dual citizen role suggests that HCBS have unique skills, identities, perspectives, and practices that contribute new ways of being and knowing that transcend traditional disciplinary boundaries. The health communication field is evolving in response to the need to address significant healthcare and policy problems. No one discipline has the ability to single-handedly fix our current healthcare systems. Narrative data from this study illustrate the importance of seeing HCBS work beyond simply being informed by disciplinary knowledge. Rather, we suggest that adapting ways of knowing and definitions of expertise is an integral part of the solution to solving persistent health problems.

Stakeholder-engaged process for refining the design of a clinical trial in home hospice.

BACKGROUND: Clinical trials in home hospice settings are important to build the evidence base for practice, but balancing the burden and benefit of clinical trial conduct for clinicians, patients, and family caregivers is challenging. A stakeholder-engaged process can help inform and refine key aspects of home hospice clinical trials. The aim of this study was to describe a stakeholder-engaged process to refine, design, and implement aspects of an educational intervention trial in home hospice, including recommendations for refining intervention content and delivery, recruitment and enrollment strategies, and content and frequency of outcome measurement. METHODS: A panel of interprofessional (1 hospice administrator, 3 nurses, 2 physicians, 2 pharmacists) and 2 former family caregiver stakeholders was systematically selected and invited to participate based on expertise, representing 2 geographically distinct hospices who were participating in the clinical trial. Teleconferences followed a predetermined procedural sequence: 1. pre-meeting materials distribution and review; 2. pre-meeting email solicitation of concerns in response to materials; 3. teleconference with structured and guided discussion; and 4. documentation and distribution of minutes for accuracy review and future meeting guidance. Discussion topics were distinct for each panel meeting. Written reflections on the stakeholder engagement process were collected from panel members to further refine our process. RESULTS: Five initial biweekly teleconferences resulted in recommendations for recruitment strategy, enrollment process, measurement frequency, patient inclusion, and primary care physician notification of the patient's trial involvement. The panel continues to participate in quarterly teleconferences to review progress and unexpected questions and concerns. Panelist reflections reveal personal and professional benefit from participation. CONCLUSIONS: An interprofessional stakeholder process is feasible and invaluable for developing home hospice intervention studies, contributing to better science, successful trial implementation, and relevant, valid outcomes. TRIAL REGISTRATION: Clinicaltrials.gov, NCT03972163 , Registered June 3, 2019.

The Me in We dyadic communication intervention is feasible and acceptable among advanced cancer patients and their family caregivers.

BACKGROUND: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients' and caregivers' individual perspectives, and those they share. AIM: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. DESIGN: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. SETTING/PARTICIPANTS: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. RESULTS: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. CONCLUSIONS: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.

Health communication roles in Latino, Pacific Islander, and Caucasian Families: A qualitative investigation.

Family communication about health is critical for the dissemination of information that may improve health management of all family members. Communication about health issues, attitudes, and behaviors in families is associated with life expectancy as well as quality of life for family members. This study addresses family communication about health by examining individual roles for family health communication and factors related to these roles, among families of three different racial/ethnic groups: Caucasians, Latinos, and Pacific Islanders. Data were collected from 60 participants recruited as 30 family dyads, 10 from each group, through qualitative semistructured interviews. Interviews were conducted with each participant separately and then together in a dyadic interview. Two coders independently coded interview transcripts using NVivo 11. Results identified the family health communication roles of collector, disseminator, health educator, and researcher. We also identified several factors related to these roles using the lens of family systems theory-the presence of chronic conditions in the family, previous experience, medical education, and family hierarchy. Findings demonstrate many similarities and relatively few differences in the family health communication roles and the related factors among the families of different race/ethnicity. Conclusions highlight implications for future research and intervention development.

"In Eight Minutes We Talked More About Our Goals, Relationship, Than We Have in Years": A Pilot of Patient-Caregiver Discussions in a Neuro-Oncology Clinic.

Primary brain cancer is a diagnosis that can have drastic health impacts on patient and caregiver alike. In high-stress situations, dyadic coping can improve psychosocial and health outcomes and communication about personal life goals maybe one way to facilitate this coping. In this study, we describe the feasibility and accessibility of a one-time, self-directed goal discussion pilot intervention for neuro-oncology patients and their primary caregivers. Ten dyads were taken to a private room to complete a pre-discussion questionnaire, a worksheet to elicit personal goals, complete an 8-min discussion of goals, a post-discussion questionnaire, and provided open-ended feedback about the process. Post-discussion, dyads reported that the intervention was not stressful. In open-ended feedback, dyads overwhelmingly reported that the intervention was a positive experience, providing a safe, calm environment to have difficult conversations. This intervention provides a positive framework for improving communication and discussion of goals between patient-caregiver dyads.

Communication of emotion in home hospice cancer care: Implications for spouse caregiver depression into bereavement.

OBJECTIVE: Family caregivers of cancer hospice patients likely benefit from clinician provision of verbal support and from expression of positive emotions. Our aim was to identify the effects of hospice nurse supportive communication as well as caregiver-nurse exchange of positive emotions on family caregiver depression during bereavement. METHODS: This prospective, observational longitudinal study included hospice nurses (N = 58) and family caregivers of cancer patients (N = 101) recruited from 10 hospice agencies in the United States. Digitally recorded nurse home visit conversations were coded using Roter interaction analysis system to capture emotion-focused caregiver-nurse communication and supportive nurse responses. Caregivers completed the Hospital Anxiety and Depression Scale Anxiety Subscale and Geriatric Depression Scale-Short Form at study enrollment and at 2, 6, and 12 months after patient death. RESULTS: Caregivers had moderate levels of depression at study enrollment and throughout bereavement. Multilevel modeling revealed that caregiver positive emotion communication and nurse emotional response communication are associated with caregiver depression in bereavement. There was no significant association between caregiver distress communication and depression in bereavement. CONCLUSIONS: This is the first study to demonstrate that communication demonstrating emotional expression between cancer spouse caregivers and nurses during home hospice may have implications for caregiver depression up to a year after patient death. Our findings may help identify caregivers who may be coping well in the short term but may struggle more over time.

Female family members lack understanding of indeterminate negative BRCA1/2 test results shared by probands.

Genetic test results have important implications for close family members. Indeterminate negative results are the most common outcome of BRCA1/2 mutation testing. Little is known about family members' understanding of indeterminate negative BRCA1/2 test results. The purpose of this mixed-methods study was to investigate how daughters and sisters received and understood genetic test results as shared by their mothers or sisters. Participants included 81 women aged 40-74 with mothers or sisters previously diagnosed with breast cancer and who received indeterminate negative BRCA1/2 test results. Participants had never been diagnosed with breast cancer nor received their own genetic testing or counseling. This Institutional Review Board-approved study utilized semi-structured interviews and surveys. Descriptive coding with theme development was used during qualitative analysis. Participants reported low amounts of information shared with them. Most women described test results as negative and incorrectly interpreted the test to mean there was no genetic component to the pattern of cancer in their families. Only seven of 81 women accurately described test results consistent with the meaning of an indeterminate negative. Our findings demonstrate that indeterminate negative genetic test results are not well understood by family members. Lack of understanding may lead to an inability to effectively communicate results to primary care providers and missed opportunities for prevention, screening, and further genetic testing. Future research should evaluate acceptability and feasibility of providing family members letters they can share with their own primary care providers.

Addressing cancer patient and caregiver role transitions during home hospice nursing care.

OBJECTIVE: Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. METHOD: A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. RESULT: Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. SIGNIFICANCE OF RESULTS: Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Behind the doors of home hospice patients: A secondary qualitative analysis of hospice nurse communication with patients and families.

OBJECTIVE: Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses' use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress. METHOD: Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses' home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques. RESULT: All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques. SIGNIFICANCE OF RESULTS: Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.

Utah Cancer Survivors: A Comprehensive Comparison of Health-Related Outcomes Between Survivors and Individuals Without a History of Cancer.

Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs. 47 % of controls). Survivors reported the majority of their cancer survivorship care was managed by primary care physicians or non-cancer specialists (93.5 %, 95 % CI = 87.9-99.1). Furthermore, 71.1 % (95 % CI = 59.2-82.9) of survivors reported that they did not receive a cancer treatment summary. In multivariable estimates, fair/poor general health was more common among survivors compared to controls (17.8 %, 95 % CI = 12.5-23.1 vs. 14.2 %, 95 % CI = 12.4-16.0). Few survivors in Utah receive follow-up care from a cancer specialist. Provider educational efforts are needed to promote knowledge of cancer survivor issues. Efforts should be made to improve continuity in follow-up care that addresses the known issues of long-term survivors that preclude optimal quality of life, resulting in a patient-centered approach to survivorship.

Supporting home hospice family caregivers: Insights from different perspectives.

ABSTRACTObjective:Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support. METHOD: Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups. RESULTS: Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05). SIGNIFICANCE OF RESULTS: Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Caregiver, patient, and nurse visit communication patterns in cancer home hospice.

OBJECTIVE: Few studies have examined the triadic communication between patients, spouse caregivers, and nurses in the home hospice setting. Thus, little is known about the types of communication patterns that unfold. The goals of the study were to, first, identify common patterns of communication in nurse-patient-caregiver home hospice visits and, second, to identify nurse, caregiver-patient dyad, and visit characteristics that predict visit communication patterns. METHOD: Nurses (N = 58) and hospice cancer patient and spouse caregiver dyads (N = 101; 202 individuals) were recruited from 10 hospice agencies. Nurses audio recorded visits to patient/caregiver homes from study enrollment until patient death. All patient, caregiver, and nurse utterances from the audio recordings were coded using an adapted Roter interaction analysis system. Using identified codes, cluster analysis was conducted to identify communication patterns within hospice visits. Logistic regression was used with demographic variables to predict visit communication patterns. RESULTS: Six visit communication patterns were identified and were defined largely by 2 dimensions: (1) either the patient, the caregiver, or the patient and caregiver dyad interacting with the nurse and (2) the relatively high or low expression of distress during the visit. Time until death significantly predicted several clusters. CONCLUSION: This study leads the way in outlining triadic communication patterns in cancer home hospice visits. Our findings have implications for nursing education, letting future nurses know what to expect, and lays the foundation for future research to determine effectiveness and interventions to improve health care communication.

A Research Agenda for Communication Scholars in the Precision Medicine Era.

The 2015 announcement of the Precision Medicine Initiative (PMI) galvanized and energized efforts to reconsider medical practice through tailoring of prevention and treatment recommendations based on genetics, environment, and lifestyle. Numerous disciplines contributed white papers identifying challenges associated with PMI and calling for discipline-specific research that might provide solutions to such challenges. Throughout these white papers, the prominence of communication in achieving the PMI's goals is obviously apparent. In this article, we highlight opportunities for communication scholars' contributions to the PMI based on challenges identified in white papers from other disciplines and work already conducted by research teams in the field of communication.

Rules of performance in the nursing home: A grounded theory of nurse-CNA communication.

This study offers an initial theoretical understanding of nurse-CNA communication processes from the perspectives of nurses and CNAs who are providing direct care to residents in nursing homes. A grounded theory approach provided an understanding of nurse-CNA communication process within the complexities of the nursing home setting. Four themes (maintaining information flow, following procedure, fostering collegiality, and showing respect) describe the "rules of performance" that intertwine in nuanced relationships to guide nurse-CNA communication processes. Understanding how these rules of performance guide nurse-CNA communication processes, and how they are positively and negatively influenced, suggests that nurse-CNA communication during direct care of nursing home residents could be improved through policy and education that is specifically designed to be relevant and applicable to direct care providers in the nursing home environment.

Breast Cancer Risk Perceptions among Relatives of Women with Uninformative Negative BRCA1/2 Test Results: The Moderating Effect of the Amount of Shared Information.

The most common result of BRCA1/2 mutation testing when performed in a family without a previously identified mutation is an uninformative negative test result. Women in these families may have an increased risk for breast cancer because of mutations in non-BRCA breast cancer predisposition genes, including moderate- or low-risk genes, or shared environmental factors. Genetic counselors often encourage counselees to share information with family members, however it is unclear how much information counselees share and the impact that shared information may have on accuracy of risk perception in family members. We evaluated 85 sisters and daughters of women who received uninformative negative BRCA1/2 results. We measured accuracy of risk perception using a latent variable model where accuracy was represented as the correlation between perceived risk (indicators = verbal and quantitative measures) and calculated risk (indicators = Claus and BRCAPRO). Participants who reported more information was shared with them by their sister or mother about her genetic counseling session had greater accuracy of risk perception (0.707, p = 0.000) than those who reported little information was shared (0.326, p = 0.003). However, counselees shared very little information; nearly 20 % of family members reported their sister or mother shared nothing with them about her genetic counseling. Family members were generally not aware of the existence of a genetic counseling summary letter. Our findings underscore the need for effective strategies that facilitate counselees to share information about their genetic counseling sessions. Such communication may help their relatives better understand their cancer risks and enhance risk appropriate cancer prevention.

Addressing Methodological Challenges in Large Communication Data Sets: Collecting and Coding Longitudinal Interactions in Home Hospice Cancer Care.

In this article, we present strategies for collecting and coding a large longitudinal communication data set collected across multiple sites, consisting of more than 2000 hours of digital audio recordings from approximately 300 families. We describe our methods within the context of implementing a large-scale study of communication during cancer home hospice nurse visits, but this procedure could be adapted to communication data sets across a wide variety of settings. This research is the first study designed to capture home hospice nurse-caregiver communication, a highly understudied location and type of communication event. We present a detailed example protocol encompassing data collection in the home environment, large-scale, multisite secure data management, the development of theoretically-based communication coding, and strategies for preventing coder drift and ensuring reliability of analyses. Although each of these challenges has the potential to undermine the utility of the data, reliability between coders is often the only issue consistently reported and addressed in the literature. Overall, our approach demonstrates rigor and provides a "how-to" example for managing large, digitally recorded data sets from collection through analysis. These strategies can inform other large-scale health communication research.

Predicting Nurses' Turnover: The Aversive Effects of Decreased Identity, Poor Interpersonal Communication, and Learned Helplessness.

Through a social identity theoretical lens, this study examines how nurses' identification with their working small group, unit, or floor, nursing role (e.g., staff ER nurse, nurse practitioner), and nursing profession relate to nurses' interaction involvement, willingness to confront conflict, feelings of learned helplessness, and tenure (employment turnover) intentions. A cross-sectional survey (N = 466) was conducted at a large, quaternary care hospital system. Structural equation modeling uncovered direct and indirect effects between the five primary variables. Findings demonstrate direct relationships between nurse identity (as a latent variable) and interaction involvement, willingness to confront conflict, and tenure intentions. Feelings of learned helplessness are attenuated by increased nurse identity through interaction involvement and willingness to confront conflict. In addition, willingness to confront conflict and learned helplessness mediate the relationship between interaction involvement and nurses' tenure intentions. Theoretical extensions include indirect links between nurse identity and learned helplessness via interaction involvement and willingness to confront conflict. Implications for interpersonal communication theory development, health communication, and the nursing profession are discussed.

Missed Opportunity: Hospice Care and the Family.

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

Social support needs: discordance between home hospice nurses and former family caregivers.

OBJECTIVE: The two goals of our study were to (1) identify which of five types of social support (Informational, Esteem, Emotional, Tangible, Belonging) are most cited by hospice nurses and family caregivers and (2) determine the match in perception of support needs. METHOD: As part of a larger multiphase project, focus groups were conducted with former family caregivers and hospice nurses to discuss their experiences of home hospice care and to gather their opinions on the important issues involved in that care. Transcripts of focus group discussions were coded for support type (Informational, Esteem, Emotional, Tangible, Belonging) based on definitions from the literature. Nurse and caregiver data were compared to assess for potential match. RESULTS: Analysis of coded data suggested that nurses see different types of support to be needed in equal measure across their caseloads, while caregivers expressed priorities for some types of support. Illustrative examples of each type of support are provided and discussed. SIGNIFICANCE OF RESULTS: Because matching support provided with the type of support desired has been linked to improved physical and psychological outcomes, it is important to focus on this match in healthcare populations particularly vulnerable to psychological stress, including family caregivers of home hospice patients. This research has implications for interventions to match support provision to caregiver needs, or for education for home hospice providers to ensure that they are not only sensitive to the possibility of a broad range of needs but also to the necessity to tailor care to those needs.

Cancer caregivers at the end-of-life: How much me vs. how much we?

OBJECTIVE: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. METHODS: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. RESULTS: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). CONCLUSION: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. INNOVATION: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.