Exploring Differences in Caregiver Communication in Serious Illness.

Background: Demographic factors, such as disease context and family relationships, are communication mediators and moderators; however, little is known about how understanding these factors can improve caregiver communication with providers. Recognition of communication differences among caregivers may aid the development of approaches to improve serious illness communication. Objective: To explore whether caregiver communication differs by disease context (cancer vs. dementia) and caregiver communication type (Manager, Carrier, Partner, and Lone). Caregiver communication type is based on communication patterns between the care recipient and caregiver. Design and Measurements: Caregivers of persons with cancer and/or dementia were surveyed from a U.S. national research registry website. Measures of caregiver communication included information needs, communication confidence, perception of provider understanding of the caregiver, perceived frequency of caregiver assessment, and caregiver stress. Analysis of variance (ANOVA) determined significant differences between caregiver communication (p < 0.05) based on disease context and caregiver communication type. Results: Cancer caregivers reported higher unrecognized-demanded information states (i.e., not recognizing information was needed), more communication confidence, and more frequent caregiver assessment compared to dementia caregivers. Among caregiver communication types, Manager caregiver types were more confident communicating than other caregiver types and perceived greater understanding by providers than the Lone caregiver type. Manager caregivers reported significantly less stress than other caregiver communication types. Conclusions: Understanding disease context and caregiver communication type may help improve caregiver communication with health care providers.

Assessing Family Caregiver Communication in Chronic Illness: Validation of the FCCT-CI.

Background: Chronic illness care demands attention to the unique needs of family caregivers who support care at home, yet few tools exist for family caregiver assessment in the social domain of practice. Objectives: The Family Caregiver Communication Tool (FCCT) assesses caregiver communication as part of the family system and was originally developed for cancer caregivers. The aim of this study was to develop and psychometrically-validate a version of the FCCT for Chronic Illness (FCCT-CI). Methods: We revised the FCCT, including the generation of new items, and psychometrically tested it in 303 family caregivers recruited through Amazon Prime Panels. Item reduction through exploratory factor analysis was conducted, internal consistency was assessed using Cronbach's alpha, and concurrent validity was conducted to demonstrate correlation of the new scale with previously validated instruments. Results: A principal axis analysis with promax rotation initially revealed a five-factor structure of the 27 items initially tested, but, after statistical and theoretical reduction and refinement, a 10 item FCCT-CI emerged. Cronbach's alpha ranged from .74 to .86 for the FCCT-CI instrument. Concurrent validity was supported by bivariate correlation tests. Conclusions: The FCCT-CI is the first psychometrically tested scale designed to assess caregiver communication with chronically ill patients, family members, and palliative care providers about caregiving. The FCCT-CI scale includes but is not limited to cancer caregiving and palliative care contexts and has good reliability and validity. Palliative care providers can use this tool to assess, design, and test interventions to support family caregivers.

Sharing COMFORT Communication Training With Healthcare Professionals in Nairobi, Kenya: A Pilot Webinar Series.

BACKGROUND: Communication training for healthcare providers is evident in the context of the COVID-19 global pandemic, however training opportunities are not available in countries with limited resources. OBJECTIVES: To investigate perceived comfort in communication about end-of-life and palliative care among healthcare providers in Nairobi, Kenya and to evaluate a pilot webinar-based communication training series. METHODS: Through a partnership with a research hospital in Nairobi, healthcare providers engaged an online survey to assess perceived comfort in communication and prior educational training in communication. The COMFORT communication model was used to develop and pilot a webinar-based communication training series to meet training needs. Pre-post measures of comfort in communication and post-curriculum evaluation were used to evaluate the webinars. RESULTS: Survey findings from 94 healthcare providers demonstrated that communication training is most needed when patient/family culture is different from provider. Physicians reported less comfort in communication than nurses and other professionals, especially in communication with family about spiritual or religious concerns. Nurses reported more overall training in palliative care communication topics than physicians and other disciplines. The 3-part webinar series increased communication comfort for physicians and nurses, was highly rated, and participants reported that they would recommend COMFORT webinar training to colleagues. CONCLUSION: Webinar-based platforms for communication training show promise for meeting communication training needs of healthcare providers.

Collective caregivers: A novel examination of health literacy management approaches.

OBJECTIVE: Health literacy and communication skills are necessary for family caregivers who often work in pairs, known as collective caregiving. Health literacy management is a relational process where communication between caregivers can be a barrier or pathway to improving or co-creating health literacy. The purpose of this study was to examine how collective caregivers manage health literacy. METHODS: Semi-structured interviews were conducted separately for 42 caregiving pairs (n = 84). The interview guide was developed using a cancer caregiver health literacy framework. Caregiving pairs were placed into one of three collective caregiving communication patterns (absolute concordant, semi-concordant, absolute discordant). Interviews were audio-recorded, transcribed, and a thematic analysis was performed by independent coders. RESULTS: The analysis revealed three different health literacy management approaches: a defined approach where caregiver roles were clearly designated (absolute concordant pairs); a contrasting approach where one caregiver was the health literacy expert (semi-concordant pairs); an independent approach characterized by individual information seeking, processing, and patient/provider engagement (absolute discordant pairs). CONCLUSIONS: Health literacy support should address aspects of the family system such as caregiver-caregiver communication which influence variance in health literacy management. Practice implications Our study can inform provider communication and healthcare interventions aimed at supporting health literacy for caregivers.

Access to Broadband Internet and its Utilization for Health Information Seeking and Health Communication among Informal Caregivers in the United States.

Informal caregivers provide unpaid care to their physically or mentally ill loved ones and play a critical role in the healthcare delivery. eHealth tools, including the broadband internet, can facilitate care processes and impact the caregiving burden through seeking health information and health communication. This study examines the predictors of access to broadband internet and the factors associated with health information seeking and health communication among informal caregivers with broadband internet. We used data from cycles 1 and 2 of the Health Information National Trends Survey (HINTS 5) and employed generalized linear regression models with the maximum likelihood estimation. Specifically, we performed a two-part model: (1) a logistic regression model of broadband internet access among all caregivers (n = 929) and (2) a logistic regression model of health information seeking and health communication among caregivers with broadband internet access (n = 404). We found that caregivers who were younger (18-34 years versus 45+ years), female (versus male), and those who were divorced/widowed/separated (versus singles) were less likely to have broadband internet access. While those who were married/living as married (versus singles), with higher incomes (≥$100,000 versus <$35,000), and those living in metropolitan areas were more likely to have broadband internet access. Among caregivers with broadband internet access, younger, female, non-Hispanic white caregivers, and those with higher levels of education and income, as well as those who cared for cancer patients, were more likely to seek health information for someone else. Additionally, caregivers aged 35-39 years and those with more education were more likely to look for health information for themselves than their counterparts. Furthermore, caregivers who were aged 40-44 years, females, divorced/widowed/separated, those with higher incomes, and those who cared for patients with Alzheimer's, confusion, and dementia were more likely to communicate electronically with a provider. The results suggest disparities in broadband internet access and indicate variations in factors associated with health information seeking and health communication. The findings underscore the need to address barriers attributed to the digital divide among informal caregiving groups.

The COMFORT Communication Model: A Nursing Resource to Advance Health Literacy in Organizations.

The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.

Caring for Family Caregivers: a Pilot Test of an Online COMFORT™ SM Communication Training Module for Undergraduate Nursing Students.

Family caregivers who provide care and support to cancer patients experience distress, burden, and decreased quality of life as a result of caregiving. Caregivers often turn to nurses for support; however, there is little training available for nurses on how to care for the family caregiver. Undergraduate nursing students have a high need to learn about engaging caregivers in care, but little content is presented to fulfill that need. Derived from the COMFORT™ SM communication curriculum, we developed a 1-h online educational module specifically addressing communication with family caregivers of cancer patients. Undergraduate nursing students (n = 128) from two accredited nursing programs completed a survey at the beginning and end of the module, in addition to answering unfolding response opportunities within the module. There was a significant increase in communication knowledge, attitude, and behaviors (p < .000) in post-test responses for students across all years of study. Knowledge based on responses to case study scenarios was more than 75% correct. Student open-ended responses to case-based scenarios featured in the module revealed student mastery and ability to apply module content (range, 40-56% across four scenarios). This online COMFORT™ SM communication training module is an innovative online cancer education tool for teaching about communication with family caregivers. This study finds the module effective for teaching undergraduate nursing students about communication with family and shows promise in interprofessional curricula as well.

Variation in health literacy among family caregiver communication types.

OBJECTIVE: Previously, four caregiver types have been identified as a result of communication patterns between patient and caregiver, revealing unique caregiver information needs and preferences. The purpose of this study was to explore variation in health literacy among the four family caregiver communication types: manager, partner, carrier, and lone caregivers. METHODS: The sample consisted of 115 cancer caregivers. Participants completed the Family Caregiver Communication Tool and the Health Literacy of Caregivers Scale-Cancer. RESULTS: A significant difference in health literacy domains was found between caregiver types for cancer-related communication with the care recipient (P = .038) and understanding of the health care system (P = .003). Of the health literacy domains, mean scores were highest on understanding the health care system for both lone and carrier caregivers. Manager and partner caregivers were highest on the social support domain. The self-care domain was lowest for the carrier, lone, and manager caregivers. CONCLUSIONS: There was a variation across health literacy domains among caregiver communication types, further validating the Family Caregiver Communication Typology. Findings showed a need for educational programs for cancer caregivers to strengthen their health literacy skills. As cancer caregivers have a prominent role in the delivery and quality of cancer care, it is pivotal for health care centers to provide caregiver communication training and support.

Providing Support for Caregiver Communication Burden: Assessing the Plain Language Planner Resource As a Nursing Intervention.

OBJECTIVE: To elicit informal caregiver feedback about an mHealth resource and it's potential as a nurse-delivered intervention for caregiver communication support. DATA SOURCES: Four focus groups with current oncology caregivers that involved caregiver use of the resource and response to a video demonstrating the resource as a nursing intervention. A brief assessment of the resource was collected for triangulation of data. CONCLUSION: Caregivers rated the resource as overwhelmingly positive and reported that use of the resource gave an increased sense of preparedness. Caregivers shared ideas for future expansion of the resource, highlighted the need for user-responsive design, and described the need for a caregiver-centered tool. IMPLICATIONS FOR NURSING PRACTICE: Communicating complex terminology relating to treatment, side effects, and symptoms requires resources to meet health literacy needs. A nursing protocol for using the resource is provided based on feedback collected from caregivers.

Mobile Health Application and e-Health Literacy: Opportunities and Concerns for Cancer Patients and Caregivers.

Health literacy is critical for cancer patients as they must understand complex procedures or treatment options. Caregivers' health literacy also plays a crucial role in caring for cancer patients. Low health literacy is associated with low adherence to medications, poor health status, and increased health care costs. There is a growing interest in the use of mobile health applications (apps) to improve health literacy. Mobile health apps can empower underserved cancer patients and their caregivers by providing features or functionalities to enhance interactive patient-provider communication and to understand medical information more readily. Despite the potentiality of improving health literacy through mobile health apps, there exist several related concerns: no equal access to mobile technology, no familiarity or knowledge of using mobile health apps, and privacy and security concerns. These elements should be taken into account for health policy making and mobile apps design and development. Importantly, mobile apps should be developed with the goal of achieving a high range of user access by considering all health literacy level and various cultural and linguistic needs.