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Objective: We investigated changes in medical students' communication competence and communication anxiety during their third year of training when they are immersed in formative clinical experiences that shape their patient-centered care and communication skills.Methods: We invited 282 students to complete a longitudinal, four-phase online survey during their third-year. Our response rate was 62.8% at Phase I (n = 177), 34.0% at Phase II (n = 96), 37.9% at Phase III (n = 107), and 48.9% at Phase IV (n = 138). Measures included communication competence, communication anxiety, and patient-centered attitudes and orientation. We employed hierarchical linear modeling to analyze the data.Results: Students' communication competence and anxiety improved over time. Female students reported greater communication anxiety and less competence related to information giving. At each phase, patient-centered attitudes significantly predicted communication competence and communication anxiety.Conclusion: Students' competence and anxiety regarding communication during medical encounters improve during their third year and are significantly influenced by their attitudes and orientation towards patient-centered care and communication.Practice Implications: Schools should integrate curriculum that fosters positive attitudes toward patient-centered communication and provides opportunities to practice complex communication skills, which may increase competence and recognition that patient-centered communication is an important clinical skill. [ABSTRACT FROM AUTHOR]

• Patients with vascular anomalies and their caregivers experience many challenges because clinicians are unfamiliar with these complex conditions. • Patients with vascular anomalies can experience delays in care for complex VAs that require early intervention by a team of specialists. • Currently, only four empirical studies examine the communication challenges faced by caregivers of patient with vascular anomalies. • More research is needed to create evidence-based models of communication that meet the needs of caregivers and patients with vascular anomalies. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. 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. • Collaboration and agreement among team members contribute to parents' satisfaction. • The information-rich context of multidisciplinary care can present dilemmas. • Parents may have competing information and decision-making goals during one visit. • Decision support and validation from providers is vital in uncertain situations. • Parents often seek confirmation that a wait-and-see approach is a valid decision. [ABSTRACT FROM AUTHOR]

We examined care and communication factors that affect physical and mental health for patients with complex vascular anomalies (VAs). VA patients (N = 135) completed an online survey with measures of ability to navigate healthcare, quality of information exchange, perceived stigma, and demographic variables. We performed linear regression to determine if these variables were associated with mental and physical health. Physical and mental health were associated with information exchange (β =.41, 95% CI=.12 −.69; β =.33, 95% CI=.04 −.62), stigma (β = −.49, 95% CI=−.74 to −.24; β = −.63, 95% CI=−.89 to −.38), and education (β = 4.00, 95% CI=.63 - 7.38; β = 3.44, 95% CI=.06 to 6.82). Ability to navigate healthcare was associated with health outcomes in our bivariate model, but not significant in a multivariate model. The results underscore the importance of effective information exchange. Poor information exchange was associated with worse physical and mental health. VA patients with lower education levels and higher perceived stigma reported poorer health outcomes and likely face many struggles accessing care. Patient-centered information exchange between clinicians and patients is needed to address unmet information needs. Clinicians can also reduce perceived stigma by validating patients, and should provide resources to reduce disparities related to education. • Patients with vascular anomalies (VAs) face many challenges accessing expert care. • Effective information exchange with clinicians is associated with better physical and mental health. • VA patients who perceive more stigma report poorer physical and mental health. • Education level is associated with VA patients' physical and mental health. • Interventions are needed to improve information exchange, reduce stigma, and reduce disparities related to education. [ABSTRACT FROM AUTHOR]

Objective: Families affected by rare diseases face many challenges finding adequate care and often report poor communication with clinicians. In the current study, we explore patient and caregiver advice for families and clinicians in the context of complex vascular malformations (VMs), a condition that is frequently misunderstood and misdiagnosed.Methods: We performed semi-structured interviews with 21 adult patients with complex VMs and 24 caregivers of children with VMs. We analyzed the transcripts using thematic analysis.Results: Participants advised patients and caregivers to advocate for care, address mental and emotional well-being, seek social support, and promote self-management and self-care. Participants advised clinicians to show care and concern, show commitment, empower and validate, communicate information clearly, address mental/emotional well-being, acknowledge the broad impact of disease and treatment, acknowledge your limitations, work as a team, and commit to learning.Conclusion: Participants' advice revealed challenges related to family-centered communication and patient and caregiver quality of life and demonstrated the importance of self-advocacy and social support.Practice Implications: The result of this study can help newly-diagnosed families overcome challenges related to care and communication. Clinicians can also use the results to support families by offering them our accompanying handout to validate families' experiences and relay this advice. [ABSTRACT FROM AUTHOR]

Parents of children with complex chronic illnesses experience substantial uncertainty that is heightened when the condition is an “orphan” illness not belonging to one medical specialty. The current study explores uncertainty experienced by parents of children with “orphan” illnesses requiring multidisciplinary care. Method: Participant-observations over 13 months ( n = 200) were combined with questionnaire data ( n = 55) to assess parental uncertainty at a multidisciplinary pediatric clinic. Results: Five unique types of uncertainty emerged from a grounded analysis ( Glaser & Strauss, 1967 ), revealing 11 interrelated uncertainties these parents experience. Findings can help providers understand parents' uncertainty and assist in family-centered decision-making. [ABSTRACT FROM AUTHOR]