Dyadic coping experiences of parents of children with vascular anomalies.

BACKGROUND: Vascular anomalies (VAs) are a spectrum of rare pediatric disorders that require coordinated care from multiple subspecialists. Parents often struggle to coordinate care for their child's complex rare disorder. Even when they do access expert care, parents of children with VAs report high levels of stress and uncertainty. While previous research has explored parents' experiences navigating care for VAs, we know very little about how parents cope with stress together. Given the effect that dyadic coping can have on individual, couple, family, and child outcomes, we aimed to gain a better understanding of dyadic coping in the context of VAs. PROCEDURES: We collected data using semi-structured interviews with 27 parents (13 dyads and one individual parent). Data were analyzed using dyadic thematic analysis. RESULTS: Parents experienced stress related to medical, personal, logistical, and financial aspects of their child's healthcare. They relied on eight coping strategies: active coping, seeking emotional support, seeking informational support, cognitive avoidance, distraction, cognitive reframing, acceptance, and internalization. When analyzed together, we found evidence of five dyadic coping dynamics: collaborative, supportive, delegated, separate, and negative. CONCLUSION: Dyadic coping is complex and multilayered for parents of children with VAs. While the child's diagnosis is considered a shared stressor, both parents may not share preferred coping strategies. Parents of the same child may also be coping with different medical, relational/social, personal, or logistical stressors altogether. Psychosocial interventions designed to facilitate parental coping should address these complex coping dynamics.

The Impact of Health Communication Research on Medical and Health Professional Education and Training.

In this essay, we review how health communication scholarship has been translated into various communication skills trainings (CSTs), we present four case studies of how health communication research informed the development and implementation of specific CSTs, and we reflect on how we can productively define "impact" in looking back as well as looking forward within this line of research.

Burdens of disease and caregiver burden in complex vascular malformations.

INTRODUCTION: Vascular malformations (VMs) are rare diseases that affect a wide age range of patients and require complicated care and management. The strain these conditions put on patients and their caretakers is not well understood. This study aims to characterize those burdens in young adult patients and parents of patients with VMs to improve communication, health-related quality of life, and caregiver burden. METHODS: We performed semi-structured interviews with patients and parents of patients with VMs. Interviews were conducted via telephone or video-call software, recorded, and transcribed. The transcriptions were analyzed to identify burden themes through multiple rounds of codebook development and refinement. The final codebook was applied to all interviews. RESULTS: Twenty-five young adult patients and 34 parent interviews were performed and led to the identification of four primary themes of disease burden that showed up in almost every interview: burdens of the disease process, logistical and financial burdens, psychological and emotional burdens, and social burdens. Persistent uncertainty was prominent and exacerbated all other burdens as well. DISCUSSION: We found that patients and parents struggle with burdens in a wider breadth of life experiences than have been previously characterized in the literature. They feel stressors of isolation, struggles with their identity, and even traumatic experiences from prior medical encounters. It is critical for providers of these patients and families to be aware of the burdens that they face outside of the immediate medical context. Acknowledging and providing space to address these burdens has the potential to greatly improve therapeutic relationships.

Identity influences on medical students' orientation to feedback during third year clinical rotations.

Medical students' feedback orientation (their attitudes about and preferences for feedback from preceptors) may change over the course of the third year of medical school and is likely influenced by identity-related factors. This study proposed that both how students view themselves personally (i.e., impostor syndrome) and how they view themselves in relation to the group (i.e., identification with the profession) are identity factors related to related to feedback orientation during clinical rotations. 177 third-year medical students enrolled in a four-phase longitudinal survey study beginning at the start of clinical rotations and continuing every twelve weeks of the academic year thereafter. Feedback orientation was conceptualized and measured as comprising aspects of utility (i.e., feedback is valuable and useful), sensitivity (i.e., feeling intimidated or threatened by corrective feedback), confidentiality (i.e., public/private context of feedback), and retention (i.e., feedback remembered). Results indicated that these aspects of feedback orientation did not significantly change during the third year. Instead, impostor syndrome was at least marginally, significantly associated with all aspects of feedback orientation across phases. Group identity was associated with feedback utility and retention, and female-identifying students reported significantly greater feedback confidentiality and feedback retention. Interventions may be needed to improve medical students' attitudes about feedback, particularly for those who experience impostor syndrome. Fostering group cohesion among medical students may influence how well students remember feedback and find it useful.

Pediatricians' Communication about Medical Uncertainty: Goal-Oriented Communication and Uncertainty Management.

Despite the prevalence of uncertainty in medicine, many physicians experience anxiety as a result of medical uncertainty and are reluctant to discuss uncertainty with others. When pediatricians do disclose uncertainty to parents, they are managing both the parents' and their own feelings of uncertainty. The current study applies uncertainty management theory and multiple goals theory to explore pediatricians' communication about uncertainty. We collected data using in-depth semi-structured interviews with 18 pediatricians. The results suggest that pediatricians prioritize task and relational goals with parents and task and identity goals with fellow physicians. Though, their appraisal of uncertainty influences their goal-oriented communication. The results highlight the relationship between uncertainty management theory and a multiple goals framework. These frameworks provide a valuable approach for gaining a more thorough understanding of pediatrician communication in the context of uncertainty.

Medical Students' Stress and Uncertainty During the COVID-19 Pandemic.

The COVID-19 pandemic triggered extraordinary levels of stress and uncertainty nationwide. In the current study, we use stress and coping theory and uncertainty management theory to examine how medical students coped with the stress and uncertainty associated with the disruption COVID-19 created in their training. Students completed a mixed-methods cross-sectional online survey one week after shifting to online instruction due to COVID-19. The survey included a measure of coping strategies and a series of open-ended questions designed to capture barriers and facilitators of coping and uncertainty management. In total, 360 students from one US medical school completed the survey. Students relied most frequently on coping strategies of distraction, acceptance, planning, positive reframing, and emotional support. However, coping strategies differed significantly by year in training. Personal uncertainty emerged as the most salient form of uncertainty. This uncertainty resulted from the loss of structure and resources, disruption of academic timelines, and, ultimately, disrupted identity as a (future) physician. Students described important barriers and facilitators of coping and uncertainty management. The barriers included constant exposure, inadequate information, rumination, and extreme responses. The facilitators included distraction, avoidance, instrumental support, emotional support, network support, and positive reframing. Overall, our results suggest that medical students experienced significant uncertainty related to their professional skills and identities as future physicians and faced many dilemmas coping with stress and managing uncertainty, mainly related to information and social support.

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.

"I Want Them to Still Trust Me with Their Child's Care": A Longitudinal Study of Pediatric Residents' Reactions to and Communication with Parents about Medical Uncertainty across Residency.

Physicians in residency training experience high levels of medical uncertainty, yet they are often hesitant to discuss uncertainty with parents. Guided by the theory of motivated information management and a multiple goals perspective, this mixed-methods longitudinal study examines associations among residents' tolerance of and reactions to uncertainty, efficacy communicating about uncertainty, and perceptions of parents' trust in them as physicians. To contextualize these associations, we also examined residents' task, identity, and relational goals when communicating about uncertainty with parents. We surveyed 47 pediatric residents at the beginning of each year of their residency program. As they progressed through their training, residents' uncertainty-related anxiety and reluctance to communicate uncertainty to parents decreased, and their efficacy communicating uncertainty with parents increased. Residents' concerns about bad outcomes remained unchanged. Residents pursued multiple, often conflicting, conversational goals when communicating uncertainty with parents. Results reveal important considerations for addressing how residents can manage their uncertainty in productive ways.

US Medical Students' Attitudes, Subjective Norms, and Perceived Behavioral Control Regarding Social Media and Online Professionalism: A Single Institution Study.

Phenomenon: In 2011, the American Medical Association added a section on professionalism and social media (i.e., e-professionalism) to the Code of Medical Ethics. Given the constantly evolving nature of social media use, research is needed to explore the attitudes and behaviors of current medical students, for most of whom social media has been a central facet of interpersonal communication and society since they were born. The goal of the current study is to examine students' social media use and attitudes related to online professionalism. Approach: Two-hundred-twenty-two medical students completed a mixed-methods cross-sectional online survey assessing perceptions of professionalism on social media. The survey was informed using the theory of planned behavior and included validated measures of attitudes, norms, and perceived behavioral control related to social media use and online professionalism. We analyzed data using thematic analysis and descriptive statistics and t-tests were conducted using SPSS 26. Qualitative and quantitative data were integrated during the data interpretation phase. Findings: Quantitative results revealed that students had a positive attitude toward having a social media presence as medical students and future physicians. Students reported: positive attitudes toward sharing positive thoughts, posting photos with family members, and posting photos in white coats or scrubs; neutral attitudes toward posting personal and political opinions; negative attitudes toward posting photos with alcohol, commenting about colleagues or the workplace, using profanity, connecting with patients, and commenting about patients. T-tests revealed significant differences between what students consider to be professional online behaviors for themselves as medical students versus what they believe society will expect of them as a physician. Students reported strong perceived behavioral control regarding professional social media behavior. While students reported they would face some difficulty "cleaning up" some previous content, students strongly disagreed that people's opinions of their online professional image were beyond their control. The qualitative analysis revealed students' perceptions of (a) what it means to demonstrate "online professionalism," (b) the challenges they face related to social media, and (c) training and standards related to social media use. Insights: Overall, our study confirms that students would benefit from e-professionalism training that is not merely disciplinary, but offers them evidence-based recommendations for maintaining medical professionalism while also embracing their personal identity and the benefits of social media as a (future) physician. Policies, guidelines, and training programs should constantly evolve as social norms regarding online communication and online identities evolve.

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.

"Confessions of a Reluctant Caregiver" Palliative Educational Program: The Results of a Survey Assessing Physicians' Perceptions of Drama-Based Education for End-of-Life Care.

Inadequate palliative care training in medical education is associated with many physicians feeling unprepared to care for dying patients and their families. Therefore, an opportunity exists to offer physicians continuing medical education that increases their understanding of and comfort with complex palliative care issues. The goal of the current study was to evaluate The Confessions of a Reluctant Caregiver Palliative Educational Program as an educational tool for physicians. The study employed a cross-sectional post-performance evaluation survey assessing physicians' perceptions of the Confessions of a Reluctant Caregiver Palliative Educational Program. The program was presented to members of four professional healthcare organizations. A total of 50 physicians completed the evaluation survey. Overall, physicians rated the Confessions of a Reluctant Caregiver Palliative Educational Program positively. Their understanding of and comfort with end-of-life issues increased significantly after participating in the program. Moreover, they considered the program to be more useful than didactic lectures and journal articles. The results suggest that the Confessions of a Reluctant Caregiver Palliative Educational Program is a valuable education tool for palliative care training. More research is needed to explore its utility as an option for continuing medical education.

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.

Confessions of a Reluctant Caregiver Palliative Educational Program: Using Readers' Theater to Teach End-of-Life Communication in Undergraduate Medical Education.

End-of-life care can be stressful for patients, caregivers, and providers. Caregivers often experience high levels of burden from caregiving duties such as performing medical tasks, communicating with providers, and making decisions. Similarly, many physicians feel unprepared to provide end-of-life care or communicate with patients and families about sensitive issues associated with death and dying. Physicians often attribute their lack of preparation to inadequate training in medical school. Previous research suggests that drama-based learning opportunities are valuable supplements to existing end-of-life curricula. The current study evaluates the success of the Confessions of a Reluctant Caregiver Palliative Educational Program - a drama-based educational program that depicts patient and caregiver experiences. A total of 477 osteopathic medical students participated in the program, which includes viewing a play, engaging in a facilitated post-performance talkback session, and completing an evaluation survey. The results suggest the program is a valuable learning experience that is positively associated with important facets of experiential learning using narratives such as perceived realism, increased reflection, strong emotions, and increased comfort with difficult behaviors. The program offers a safe environment for medical students to identify, understand, and process the sensitive and complex issues associated with end-of-life care. Moreover, the play offers insight into the often-overlooked experiences of family caregivers who are at risk of experiencing high caregiver burden while managing health-related communication and decision-making.

Memorable Messages Parents of Children with Vascular Birthmarks Receive from Others: Implications for Stigma and Identity.

Parents of children with visible illnesses and physical differences, such as vascular birthmarks (VBs), often fear that their child will be stigmatized by others. Despite their use of various strategies to minimize this stigma, parents still frequently receive comments and questions from others about their child's condition. In the current study, we explore the source, content, and valence of these messages using a memorable messages framework. We also examine how parents react to messages from others and why those messages are considered memorable. To collect data, we administered a cross-sectional online survey through the website and social media pages of a national support group for parents of children with vascular birthmarks. A total of 70 parents completed the survey and, altogether, recalled 92 memorable messages. Our analyses revealed that the significance of the memorable messages coalesced around identity. Specifically, the messages described carried implications for a) participants in terms of their identities as parents, and b) participants' children in terms of their identities as stigmatized individuals. When messages were directed at parents, parents appraised them negatively or positively to the extent that they made parents feel judged or validated as parents of children with VBs. When messages were directed at children, parents appraised them negatively or positively to the extent that they labeled children and their VB as abnormal, unattractive, and undesirable, or accepted and complimented children as unique, special, and beautiful. The current research extends previous research exploring the role of memorable messages in negotiating identity.

Moving toward Narrative Competence and Inclusive Healthcare through the Open Book Project.

This essay offers a layered account of the origins and enactment of a narrative medicine program at the Ohio University Heritage College of Osteopathic Medicine titled the Open Book Project (OBP). Narrative medicine positions clinical judgment as involving both scientific and narrative reasoning, a set of practices particularly well-suited to fostering inclusive health care and social justice. The OBP involved first-year medical students who met bi-monthly to witness, reflect on, and write about literary passages, visual images, music and lyrics, and other works of art. Sessions also provided opportunities for participants to attentively listen and respond to others, opening themselves to diverse ways of knowing and being. The authors move between academic literature, participants' compositions developed during the project, and students' testimonies to illustrate the dividends and difficulties of narrative medicine.

Uncertainty Management and Decision Making: Parents' Experiences During their First Visit to a Multidisciplinary Clinic for their Child's Vascular Anomaly.

PURPOSE: To gain a better understanding of parental decision making in situations of uncertainty and multidisciplinary care, we explored parents' decision-making experiences while seeking care for their child's vascular anomaly at a multidisciplinary clinic at a large Midwestern children's hospital. DESIGN AND METHODS: We collected data using semi-structured interviews with 29 parents after they met with multiple specialists for the care of their child's vascular anomaly. RESULTS: The findings revealed parents' attempts to manage decision-related uncertainty about their child's vascular anomaly included seeking information, avoiding information, and seeking support from the specialists. Parents described how information management both facilitated and obstructed decision making. CONCLUSIONS: Overall, the study reveals several benefits and challenges of making decisions about the management of uncertain childhood conditions, like vascular anomalies, in a multidisciplinary context. The information-rich environment produces information-management dilemmas that challenge parents' decision making efforts. Therefore, parents relied on the support of the team of specialists to make decisions about their child's treatment. PRACTICE IMPLICATIONS: The study offers practical implications concerning the barriers of autonomy in decision making. Healthcare professionals should acknowledge the potential for parents' to have shifting information and decision-making goals and preferences, and should explicitly support parents throughout the decision-making process.

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.

Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness.

Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child's illness. It is common for children with complex chronic illnesses to see multiple specialists for the treatment of their condition. While previous research has explored parents' uncertainty during a child's diagnosis and during end-of-life care, less is known about these experiences when the child is referred to a team of specialists for treatment. The aim of the current study was to explore how specialists, as credible authorities, influence parents' uncertainty during parents' first visit to a multidisciplinary clinic for the care of their child's complex chronic illness. Data were collected through semi-structured interviews with 29 parents after their child's first visit to a vascular anomaly clinic at a large Midwestern children's hospital. The results suggest parents' communication with credible authorities facilitates effective uncertainty management primarily through the mechanism of uncertainty reappraisal. The results also suggest that specialists, as credible authorities, are a key mechanism in the appraisal of uncertainty for conditions that are often misdiagnosed and mismanaged.

Hospital-Community Partnerships: Facilitating Communication for Population Health on Columbus' South Side.

Previous studies have focused on the role anchor institutions play in community development. However, less attention has been directed to how hospitals can effectively partner with community-organizations and residents as part of population health efforts. This article examines community views of one initiative developed by a major American children's hospital in partnership with local community organizations. The data for this study come from 35 in-depth interviews with local residents from the neighborhood adjacent to the hospital and two interviews with hospital administrators. Our findings suggest that the contexts in which hospitals and other non-profit corporations operate pose unique challenges to effective communication. In particular, hospitals and community organizations may think differently about the merits and nature of open communication. Especially when acting as anchor institutions working beyond their formal medical expertise, hospitals may struggle to communicate the scope and goals of their non-medical work in the community.

Students' Perceptions of Trigger Warnings in Medical Education.

Phenomenon: Trigger warnings are verbal statements or written warnings that alert students in advance to potentially distressing material. Medical education includes numerous subjects frequently identified as triggers, such as abuse, rape, self-injurious behaviors, eating disorders, drug and alcohol addiction, and suicide. Thus, exploring medical students' perceptions of trigger warnings may provide a valuable perspective on the use of these warnings in higher education. APPROACH: As part of a larger descriptive, cross-sectional survey study on medical education, we assessed 1st- and 2nd-year medical students' perceptions of trigger warnings in the preclinical curriculum. Five questions specific to trigger warnings explored students' knowledge, prior experience, and perceptions of trigger warnings in medical education. Frequencies of individual question responses were calculated, and qualitative data were analyzed via content and thematic analyses. FINDINGS: Of the 424 medical students invited to participate, 259 completed the survey (M = 24.8 years, SD + 3.4, 51.4% female, 76.1% White, 53.7% 1st-year students). Few students (11.2%) were aware of the term trigger warning and its definition. However, after being presented with a formal definition on the online survey, 38.6% reported having had a professor use one. When asked whether they supported the use of trigger warnings in medical education, respondents were distributed fairly equally by response (yes = 31.0%, maybe = 39.2%, no = 29.7%). Qualitative analysis revealed three themes: (a) Trigger Warnings Allow Students to Know What is Coming and Prepare Themselves: Respondents believed that trigger warnings would benefit students with a history of trauma by providing them additional time to prepare for the material and, if appropriate, seek professional help; (b) Students Need to Learn How to Handle Distressing Information: Respondents agreed that they needed to learn and cope with highly sensitive material because they would be confronted with difficult and unexpected situations in clinical practice; and (c) Trigger Warnings Help Students Understand the Severity of the Material: Respondents felt that trigger warnings may help students understand the severity of the material being covered and increase awareness about trauma and its effects on health and well-being. Insights: Findings did not reach consensus for or against the use of trigger warnings in medical school; however, students emphasized the importance of learning how to cope with distressing material. Trigger warnings may represent a teaching tool to facilitate classroom discussions about the severity of trauma-related material and problem-focused coping strategies.