The COMFORT Model: Moving the Initiative Outside of the Academy.

Reflexive and prospective in nature, the creators of the COMFORT model describe experiences of moving this research outside of the academy. The COMFORT model represents the seven basic principles of healthcare provider communication: C - Connect, O - Options, M - Making Meaning, F - Family Caregivers, O - Openings, R - Relating, T - Team. The COMFORT initiative began as a call for change in healthcare communication education. Originally published as a final chapter in a volume on family and palliative care communication, it was the start of an extensive translational program of trainings and tools addressing healthcare provider communication.

Validating the Communicating Care Needs Tool for HIV (CCNT-HIV).

Health literacy has been identified as an influential factor affecting the HIV care continuum and HIV epidemic, but recent systematic reviews found mixed relationships between health literacy and HIV medication adherence. This may be partially due to discrepancies between health literacy conceptualizations, health literacy measures, and the lifeworld, day-to-day challenges that persons with HIV (PWH) face as they seek and receive care. To address these challenges, a new health literacy tool, Communicating Care Needs Tool for HIV (CCNT-HIV), was developed. With survey responses from 118 PWH, the current study compares CCNT-HIV with the Brief Health Literacy Screening Tool (BRIEF) and the All Aspects of Health Literacy Scale (AAHLS) by conducting a principal component analysis. Six principal components were identified for CCNT-HIV; one principal component was identified for BRIEF; and three principal components were identified for AAHLS. With a correlation analysis, relevance among principal components across the three tools validated CCNT-HIV. This study extended the scope of health literacy measures by emphasizing the relational, multi-variable, collaborative impacts stakeholders make on patients' health management. Practical implications for how health literacy tools, like the CCNT-HIV, can be used to directly benefit patients and their health management are also discussed.

Family Communication in Autism Spectrum Disorder: Applying the Family Caregiver Communication Typology to Parent Caregivers.

Parents of children with Autism Spectrum Disorder (ASD) experience greater stress and caregiver burden than parents of children with other disabilities. To cope with the stress of long-term caregiving, they rely on professionals for support and guidance. However, parents continue to report unmet communication and support needs. To inform tailored communication for parents of a child with ASD, this study used the existing Family Caregiver Communication Typology framework which identifies four caregiver communication types (manager, carrier, partner, and lone) and their unique communication and support needs. In-depth, structured interviews were conducted with parents (n = 22) and ASD professionals (n = 28) to explore communication characteristics of ASD parent caregivers. A thematic analysis revealed communication behaviors among four ASD parent caregiver types, further validating the typology. Future research is needed to develop targeted interventions for improving family-centered care based on ASD parent caregiver types.

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.

Family caregivers' perceived communication self-efficacy with physicians.

OBJECTIVE: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. METHOD: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. RESULTS: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. SIGNIFICANCE OF RESULTS: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role.

OBJECTIVE: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends). METHODS: A three-step process was conducted: (a) two-round online Delphi method process with experts (n = 9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n = 32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n = 6) to explore caregiving experiences and curriculum content topics. RESULTS: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with health care providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care. CONCLUSIONS: This theoretically grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes.

Promoting Transformative Community Change for Equitable Health: Peer Education and Intervention for Pre-Exposure HIV Prophylaxis.

Many new HIV infections occur through individuals who are unaware of their HIV status. HIV disparities are more prevalent among underserved populations, and the number of new cases in the U.S. is highest in the Southern region. Using the Social Network Intervention, 63 undergraduate students delivered a face-to-face, communication-centered, peer education to 333 peers in the underserved communities; of those, 220 verified cases were analyzed. A baseline assessment was followed by the intervention and the second assessment, with the third assessment 2 weeks later. Assessments measured intervention impacts on health information sharing, knowledge about HIV/AIDS, and the dimensions of vested interest theory. The peer education was effective in making changes in participants' vestedness, knowledge regarding HIV/AIDS, and trust and expectation toward informational sources. Communication and tailored messages through established relationship channels were proven crucial for promoting positive behaviors about HIV sexual health, with strong evidence of change in stigma and the culture of silence.

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.

Access to Personal Health Records and Screening for Breast and Cervical Cancer Among Women with a Family History of Cancer.

It is essential for at-risk women to be screened for breast and cervical cancer in a timely manner. Despite a growing interest in the role of health information technology including personal health records (PHRs) to improve quality and outcomes in health care, less is known about the effectiveness of PHRs to promote breast and cervical cancer screening among women with a family history of cancer (FHC). We examined the association between access to PHRs and the use of a recommended mammography and a Pap smear testing among women with a FHC using data from the 2015 Health Information National Trends Survey (HINTS 4-cycle 4) and the 2016 Area Health Resource Files. The study sample was comprised of 1250 women aged 20-75 years with a FHC, a subsample of 3677 survey respondents. Of the 1250 women, 64.96% received a mammogram, and 75.44% underwent a Pap testing. Among women with a FHC, there was a significant and positive association between access to PHRs and the receipt of a mammogram (adjusted odds ratio (aOR) 4.20; 95% CI, 2.23-7.94; p < .001) and a Pap testing (aOR 3.13; 95% CI, 1.56-6.28; p < .01). Our findings suggest that at-risk women can benefit from greater access to PHRs. Policymakers should consider incentivizing providers and healthcare organizations who provide access to PHRs to their patients as well as developing programs that can help improve access to PHRs among at-risk women.

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.

Caregiver Communication About Cancer: Development of a mhealth resource to support family caregiver communication burden.

OBJECTIVE: The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members). METHODS: An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n = 5), (g) assessment of quality and perceived impact by cancer providers (n = 26), and (h) acceptability testing with caregivers (n = 6). RESULTS: Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features. CONCLUSIONS: This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for 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.

Promoting improved family caregiver health literacy: evaluation of caregiver communication resources.

OBJECTIVES: Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for CaregiversTM . METHODS: Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. RESULTS: Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for CaregiversTM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. CONCLUSIONS: Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for CaregiversTM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education. Copyright © 2016 John Wiley & Sons, Ltd.

Validation of a model of family caregiver communication types and related caregiver outcomes.

OBJECTIVE: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. METHOD: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. RESULTS: Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. SIGNIFICANCE OF RESULTS: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.

Family caregiver communication in oncology: advancing a typology.

OBJECTIVES: The quality of communication between the patient and family caregiver impacts quality of life and well-being for the two; however, providers have few tools to understand communication patterns and assess the communication needs and preferences of caregivers. The aims of this study were to examine family communication patterns among oncology patients and their caregivers and to identify common characteristics among four different types of family caregivers. METHODS: Nurses recruited oncology patient-caregiver dyads through a large cancer treatment center in the Southeast. Patients and caregivers were separated from one another and interviewed during chemotherapeutic infusions. Interviews were recorded, transcribed, coded, and thematized. RESULTS: A sample of 24 patients and their caregivers (n = 48) were interviewed. The majority of dyads (21, 88%) shared the same family communication pattern. Common caregiver communication features support previous work identifying four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure. CONCLUSIONS: Caregiver communication types were corroborated by patient-caregiver descriptions of caregiving. However, more information is needed to ascertain the variables associated with each caregiver type. Future work to improve identification of caregiver types and create targeted caregiver care plans will require further study of health literacy levels and tested communication interventions per type.

The entry-level physical therapist: a case for COMFORT communication training.

Entry-level physical therapists provide clinical care for patients with functional mobility limitations. Their care spans the continuum of settings, disease processes, and diagnoses. Although effective communication skills are required to conduct physical therapy work, there is limited instruction provided in physical therapy education and students receive little exposure to seriously or chronically ill patients. The goal of this study was to assess the effects of communication training for the entry-level physical therapist facing palliative and end-of-life communication with patients/families. A pre-post survey design and narrative writing were used to assess the effect of the COMFORT communication training curriculum provided to doctorally trained, graduating physical therapists. The study demonstrated decreased student apprehension about communicating with dying patients and their families, and a comparison of mean scores reflecting the students' communication knowledge, confidence, and behaviors increased in a positive direction. As students became more willing to communicate, they were also more adept at integrating task and relational messages, as well as assimilating emotional support messages for patients and families. This study shows promise for the feasibility and utilization of the COMFORT curriculum for entry-level physical therapists. Further research should address the integration of COMFORT earlier into physical therapy education, as well as assess evidence of COMFORT communication skills in the clinical context.

A conceptual model of the nurse's role as primary palliative care provider in goals of care communication.

Objective: Nurses have opportunities to engage in goals of care conversations that can promote palliative care communication. The purpose of this study was to describe nurses' experiences in goals of care communication as summarized in the literature and to present a conceptual model of communication pathways for nurses. Methods: An integrative review of the literature (2016-2022) addressing nurses' experiences in goals of care communication was conducted using PubMed, CINAHL, and PsychInfo databases. A total of 92 articles were retrieved. A total of 12 articles were included for this review after applying the inclusion and exclusion criteria. Results: Of the 12 articles, the majority were qualitative studies (n = 8). Qualitative analysis of findings from all articles revealed three dominant themes: nurses' ambiguous role responsibilities, goals of care as end-of-life communication, and the need for nurse communication training. Conclusion: This article suggests an innovative conceptual model for advancing nurse communication about goals of care to facilitate primary palliative care. Innovation: The framework characterizes two communication pathways for Advanced Practice Nurses who direct goals of care discussions and Registered Nurses who support goals of care communication. The model informs future communication training aimed at supporting primary palliative care.

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.