Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers.

OBJECTIVES: To describe patients' and surrogate information seekers' experiences talking to clinicians about online cancer information. To assess the impact of clinicians telling patients or surrogate seekers not to search for information online. DESIGN: Cross-sectional survey. SAMPLE: A total of 282 participants, including 185 individuals with cancer and 97 surrogate seekers. METHODS: Individuals were recruited through a broad consent registry and completed a 20-min survey. FINDINGS: Cancer patients and surrogate seekers did not differ significantly in their experiences talking with clinicians about online cancer information. Nearly all patients and surrogate seekers who were told by a clinician not to go online for cancer information did so anyway. IMPLICATIONS: Interventions for improving cancer information seeking and communication with clinicians should target both patients and surrogate seekers. Clinicians should be educated about effective ways to communicate with patients and surrogate seekers about online cancer information.

Tele-Oncology Use During the COVID-19 Pandemic: Patient Experiences and Communication Behaviors with Clinicians.

Background: Tele-oncology became a widely used tool during the COVID-19 pandemic, but there was limited understanding of how patient-clinician communication occurred using the technology. Our goal was to identify how communication transpired during tele-oncology consultations compared with in-person appointments. Methods: A convergent parallel mixed-method design was utilized for the web-based survey, and follow-up interviews were conducted with cancer patients from March to December 2020. Participants were recruited from the University of Florida Health Cancer Center and two national cancer organizations. During the survey, participants rated their clinician's patient-centered communication behaviors. Open-ended survey responses and interview data were combined and analyzed thematically using the constant comparative method. Results: A total of 158 participants completed the survey, and 33 completed an interview. Ages ranged from 19 to 88 years (mean = 64.2; standard deviation = 13.0); 53.2% identified as female and 44.9% as male. The majority of respondents (76%) considered communication in tele-oncology equal to in-person visits. Preferences for tele-oncology included the ability to get information from the clinician, with 13.5% rating tele-oncology as better than in-person appointments. Tele-oncology was considered worse than in-person appointments for eye contact (n = 21, 12.4%) and virtual waiting room times (n = 50, 29.4%). The following qualitative themes corresponded with several quantitative variables: (1) commensurate to in-person appointments, (2) uncertainty with the digital platform, (3) lack of a personal connection, and (4) enhanced patient experience. Conclusion: Patient-centered communication behaviors were mostly viewed as equally prevalent during tele-oncology and in-person appointments. Addressing the challenges of tele-oncology is necessary to improve the patient experience.

Caring for an Individual with Chronic Lymphocytic Leukemia (CLL): Understanding Family Caregivers' Perceptions of Social Support, Caregiver Burden, and Unmet Support Needs.

Family caregivers (FCs) of a patient with chronic lymphocytic leukemia (CLL) can encounter unpredictable challenges and care demands. They can experience high levels of burden, a loss of self-care, and poor quality of life. Their receipt of social support and ability to communicate with clinicians may impact their burden. FCs would benefit from educational resources that teach them communication skills central to their ability to obtain the support they need-support that is imperative to reducing burden. To better target psychosocial educational interventions focused on social support and communication skills, we aimed to explore the relationship between social support, sources of support, and burden; the relationship between FCs' clinical communication and their perceptions of support and burden; and any unmet support needs. A total of 575 CLL FCs completed an online survey of validated scales about social support, burden, and clinical communication, as well as an open-ended item in which they reported any unmet support needs. Statistical analyses showed that FCs who perceived they were more supported reported less burden, and female FCs reported more burden than males. Support from family, friends, and professionals collectively contributed to FCs' support. FCs who perceived they had stronger communication skills with their loved one's clinicians reported more social support. FCs identified six areas of unmet support needs: financial, emotional, informational, instrumental, peer, and communication support. Collectively, findings show that increased social support can reduce FCs' burden and qualitative findings provide a roadmap of social support domains to target that could potentially improve the caregiving experience.

Mapping Uncharted Terrain: A Systematic Review of Complementary and Integrative Health Communication Using Observational Data in Biomedical Settings.

Complementary and integrative health (CIH) use is diverse and highly prevalent worldwide. Prior research of CIH communication in biomedical encounters address safety, efficacy, symptom management, and overall wellness. Observational methods are rarely used to study CIH communication and avoid recall bias, preserve ecological validity, and contextualize situated clinical communication. Following PRISMA guidelines, we systematically reviewed studies at the intersection of social scientific observational research and findings about CIH communication between clinicians, patients, and caregivers in biomedical settings. We identified international, peer-reviewed publications from seven databases between January 2010 and December 2020. Titles and abstracts were first screened for inclusion, then full studies were coded using explicit criteria. We used a standard checklist was modified to assess article quality. Ten of 11,793 studies examined CIH communication using observational methods for CIH communication in biomedical settings. Studies used a range of observational techniques, including participant and non-participant observation, which includes digital audio or video recordings. Results generated two broad sets of findings, one focused on methodological insights and another on CIH communication. Despite methodological and topic similarities, included studies addressed CIH communication as a process and as proximal and intermediate health outcomes. We recommend how observational studies of CIH communication can better highlight relationships between communication processes and health outcomes. Current research using observational methods offers an incomplete picture of CIH communication in biomedical settings. Future studies should standardize how observational techniques are reported to enhance consistency and comparability within and across biomedical settings to improve comparability.

Preparing Patients to Communicate with Their Doctors About Clinical Trials as a Treatment Option: Impact of a Novel Video Intervention for Patients with a Blood Cancer and Their Caregivers.

Cancer clinical trials (CCTs) are imperative for advancing cancer treatment and providing treatment options for patients; however, many barriers exist to offering and enrolling interested and eligible patients. It is crucial to equip patients and caregivers with communication skills that help them initiate and navigate conversations about the option of receiving treatment within a CCT. The aim was to assess the acceptability and impact of a novel video training for patients and caregivers that models strategies for patient-provider communication using the PACES method of healthcare communication and provides information about CCTs. The three-module training was implemented among blood cancer patients and caregivers. Using a single-arm pre-post study design, self-report surveys assessed changes in knowledge, confidence in using the PACES method, and perceived importance of, confidence in, and behavioral intention related to talking with doctors about CCTs. The Patient Report of Communication Behavior (PRCB) scale was administered. Among 192 participants, post-intervention knowledge gains were evident (p < 0.001). Confidence, importance, and likelihood to communicate about CCTs and confidence about using PACES also increased (p < 0.001); females who had never previously spoken to a provider about CCTs demonstrated greater impact (p = 0.045) than other genders. PRCB mean scores increased among patients 65+ who had never spoken to a provider about CCTs, with greater change than patients <65 (p = 0.001). This educational intervention for patients and caregivers increased knowledge about CCTs, skills in communicating with doctors about care and CCTs, and readiness to initiate conversations about CCTs as a potential treatment option.

A systematic scoping review of patient and caregiver self-report measures of satisfaction with clinicians' communication.

OBJECTIVE: We conducted a systematic scoping review of self-report tools used to measure patient and/or caregiver satisfaction with clinician communication. Aims included identifying: 1) instruments that have been used to measure communication satisfaction, and 2) content of the communication items on measures. METHODS: Two databases (PubMed and CINAHL) were searched for relevant studies. Eligibility included patient or caregiver self-report tools assessing satisfaction with clinicians' communication in a biomedical healthcare setting; and the stated purpose for using the measurement involved evaluating communication satisfaction and measures included more than one question about this. All data were charted in a form created by the authors. RESULTS: Our search yielded a total of 4531 results screened as title and abstracts; 228 studies were screened in full text and 85 studies were included in the review. We found 53 different tools used to measure communication satisfaction among those 85 studies, including 29 previously used measures (e.g., FS-ICU-24, CAHPS), and 24 original measures developed by authors. Content of communication satisfaction items included satisfaction with content-specific communication, interpersonal communication skills of clinicians, communicating to set the right environment, and global communication satisfaction items. CONCLUSION: There was high variability in the number of items and types of content on measures. Communication satisfaction should be better conceptualized to improve measurement, and more robust measures should be created to capture complex factors of communication satisfaction. PRACTICE IMPLICATIONS: Creating a rigorous evaluation of satisfaction with clinician communication may help strengthen communication research and the assessment of communication interventions.

Are evaluations in simulated medical encounters reliable among rater types? A comparison between standardized patient and outside observer ratings of OSCEs.

Objective: By analyzing Objective Structured Clinical Examination (OSCE) evaluations of first-year interns' communication with standardized patients (SP), our study aimed to examine the differences between ratings of SPs and a set of outside observers with training in healthcare communication. Methods: Immediately following completion of OSCEs, SPs evaluated interns' communication skills using 30 items. Later, two observers independently coded video recordings using the same items. We conducted two-tailed t-tests to examine differences between SP and observers' ratings. Results: Rater scores differed significantly on 21 items (p < .05), with 20 of the 21 differences due to higher SP in-person evaluation scores. Items most divergent between SPs and observers included items related to empathic communication and nonverbal communication. Conclusion: Differences between SP and observer ratings should be further investigated to determine if additional rater training is needed or if a revised evaluation measure is needed. Educators may benefit from adjusting evaluation criteria to decrease the number of items raters must complete and may do so by encompassing more global questions regarding various criteria. Furthermore, evaluation measures may be strengthened by undergoing reliability and validity testing. Innovation: This study highlights the strengths and limitations to rater types (observers or SPs), as well as evaluation methods (recorded or in-person).

Adult-Child Caregivers' Family Communication Experiences after an Older Parent's Blood Cancer Diagnosis: A Survey Exploring Their Openness, Avoidance, and Social Support.

Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.

Adult sibling-related experiences while caring for a parent diagnosed with a blood cancer.

INTRODUCTION: An older parent's blood cancer diagnosis impacts the entire family system, including adult siblings, an often overlooked subsystem of the family. Yet, adult siblings are typically involved in their parents' care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development. METHOD: Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semistructured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method. RESULTS: Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping). DISCUSSION: Findings illustrate how a parent's blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Understanding the Impact of COVID-19 on Chronic Lymphocytic Leukemia (CLL) Caregiving and Related Resource Needs.

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management-a role that has been heightened during the COVID-19 pandemic given the healthcare system's reliance on frontline family caregivers and CLL patients' increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn't work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.

Validation of the transactional eHealth literacy instrument with cancer caregivers.

Objective: Family members are important sources of support for patients with cancer. They access, evaluate, and engage with online information and discuss it with a cancer clinician. This study validates the 4-dimensions, 18-item Transactional eHealth Literacy Instrument (TeHLI) and proposed to include Clinical eHealth Literacy as a 5th dimension. Methods: The Leukemia & Lymphoma Society (LLS) disseminated an online survey to 121 family member caregivers between March-June 2020. We conducted confirmatory factor analyses (1) to examine model fit for the 4-factor TeHLI in the cancer caregiver population, and (2) to examine the model fit when adding the 5th factor. Results: The 4-dimension model yielded acceptable model fit (RMSEA = 0.09; 90% CI = 0.08-0.11; CFI = 0.98; TLI = 0.98; SRMR = 0.07). The 5-dimension model also yielded acceptable model fit (RMSEA = 0.08; 90% CI = 0.07-0.10; CFI = 0.97; TLI = 0.97; SRMR = 0.08), supporting the expansion of the TeHLI within this population. Conclusion: The five-dimension TeHLI is a valid and reliable measure of eHealth literacy among blood cancer caregiver populations. Innovation: The TeHLI can be used as an outcome measure for communication skills training for caregivers, patients, and clinicians.

Comparing Transactional eHealth Literacy of Individuals With Cancer and Surrogate Information Seekers: Mixed Methods Study.

BACKGROUND: The number of adults entering higher-risk age groups for receiving a cancer diagnosis is rising, with predicted numbers of cancer cases expected to increase by nearly 50% by 2050. Living with cancer puts exceptional burdens on individuals and families during treatment and survivorship, including how they navigate their relationships with one another. One role that a member of a support network may enact is that of a surrogate seeker, who seeks information in an informal capacity on behalf of others. Individuals with cancer and surrogate seekers often use the internet to learn about cancer, but differences in their skills and strategies have received little empirical attention. OBJECTIVE: This study aimed to examine the eHealth literacy of individuals with cancer and surrogate information seekers, including an investigation of how each group evaluates the credibility of web-based cancer information. As a secondary aim, we sought to explore the differences that exist between individuals with cancer and surrogate seekers pertaining to eHealth literacies and sociodemographic contexts. METHODS: Between October 2019 and January 2020, we conducted a web-based survey of 282 individuals with cancer (n=185) and surrogate seekers (n=97). We used hierarchical linear regression analyses to explore differences in functional, communicative, critical, and translational eHealth literacy between individuals with cancer and surrogate seekers using the Transactional eHealth Literacy Instrument. Using a convergent, parallel mixed methods design, we also conducted a thematic content analysis of an open-ended survey response to qualitatively examine how each group evaluates web-based cancer information. RESULTS: eHealth literacy scores did not differ between individuals with cancer and surrogate seekers, even after adjusting for sociodemographic variables. Individuals with cancer and surrogate seekers consider the credibility of web-based cancer information based on its channel (eg, National Institutes of Health). However, in evaluating web-based information, surrogate seekers were more likely than individuals with cancer to consider the presence and quality of scientific references supporting the information. Individuals with cancer were more likely than surrogate seekers to cross-reference other websites and web-based sources to establish consensus. CONCLUSIONS: Web-based cancer information accessibility and evaluation procedures differ among individuals with cancer and surrogate seekers and should be considered in future efforts to design web-based cancer education interventions. Future studies may also benefit from more stratified recruitment approaches and account for additional contextual factors to better understand the unique circumstances experienced within this population.

Effect of Experiential Communication Skills Education on Graduate Medical Education Trainees' Communication Behaviors: A Systematic Review.

PURPOSE: A better understanding of how communication skills education impacts trainees' communication skills is important for continual improvement in graduate medical education (GME). Guided by the Kirkpatrick Model, this review focused on studies that measured communication skills in either simulated or clinical settings. The aim of this systematic review was to examine the effect of experiential communication skills education on GME trainees' communication behaviors. METHOD: Five databases were searched for studies published between 2001 and 2021 using terms representing the concepts of medical trainees, communication, training, and skills and/or behaviors. Included studies had an intervention design, focused only on GME trainees as learners, used experiential methods, and had an outcome measure of communication skills behavior that was assessed by a simulated or standardized patient (SP), patient, family member, or outside observer. Studies were examined for differences in outcomes based on study design; simulated versus clinical evaluation setting; outside observer versus SP, patient, or family member evaluator; and length of training. RESULTS: Seventy-seven studies were ultimately included. Overall, 54 (70%) studies reported some positive findings (i.e., change in behavior). There were 44 (57%) single-group pre-post studies, 13 (17%) nonrandomized control studies, and 20 (26%) randomized control studies. Positive findings were frequent in single-group designs (80%) and were likely in nonrandomized (62%) and randomized (55%) control trials. Positive findings were likely in studies evaluating communication behavior in simulated (67%) and clinical (78%) settings as well as in studies with outside observer (63%) and SP, patient, and family member (64%) evaluators. CONCLUSIONS: This review demonstrates strong support that experiential communication skills education can impact GME trainees' communication behaviors. Marked heterogeneity in communication trainings and evaluation measures, even among subgroups, did not allow for meta-analysis or comparative efficacy evaluation of different studies. Future studies would benefit from homogeneity in curricular and evaluation measures.

Skills-Based Programs Used to Reduce Physician Burnout in Graduate Medical Education: A Systematic Review.

BACKGROUND: Physician burnout is pervasive within graduate medical education (GME), yet programs designed to reduce it have not been systematically evaluated. Effective approaches to burnout, aimed at addressing the impact of prolonged stress, may differ from those needed to improve wellness. OBJECTIVE: We systematically reviewed the literature of existing educational programs aimed to reduce burnout in GME. METHODS: Following the PRISMA guidelines, we identified peer-reviewed publications on GME burnout reduction programs through October 2019. Titles and abstracts were reviewed for relevance, and full-text studies were acquired for analysis. Article quality was assessed using the Medical Education Research Study Quality Instrument (MERSQI). RESULTS: A total of 3534 articles met the search criteria, and 24 studies were included in the final analysis. Article quality varied, with MERSQI assessment scores varying between 8.5 and 14. Evaluation was based on participant scores on burnout reduction scales. Eleven produced significant results pertaining to burnout, 10 of which yielded a decrease in burnout. Curricula to reduce burnout among GME trainees varies. Content taught most frequently included stress management (n = 8), burnout reduction (n = 7), resilience (n = 7), and general wellness (n = 7). The most frequent pedagogical methods were discussion groups (n = 14), didactic sessions (n = 13), and small groups (n = 11). Most programs occurred during residents' protected education time. CONCLUSIONS: There is not a consistent pattern of successful or unsuccessful programs. Further randomized controlled trials within GME are necessary to draw conclusions on which components most effectively reduce burnout.

Blood cancer caregiving during COVID-19: understanding caregivers' needs.

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.