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.

Navigating care for rare diseases: Caregiver and patient advice for families and clinicians managing care for vascular malformations.

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.