RESUMO
OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.
Assuntos
Médicos , Humanos , Lactente , Prognóstico , Pais , Estudos de Coortes , ComunicaçãoRESUMO
OBJECTIVE: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians. STUDY DESIGN: Parents of infants with neurologic conditions in neonatal and pediatric intensive care units participated in a longitudinal decision-making study from 2018 through 2020. Parents completed semi-structured interviews upon enrollment, within 1 week after a conference with providers, at discharge, and 6 months post-discharge. We used a conventional content analysis approach and NVIVO 12 to analyze data related to mental health. RESULTS: We enrolled 61 parents (n = 40 mothers, n = 21 fathers) of 40 infants with neurologic conditions in the intensive care unit. In total, 123 interviews were conducted with 52 of these parents (n = 37 mothers, n = 15 fathers). Over two-thirds of parents (n = 35/52, 67%) discussed their mental health in a total of 61 interviews. We identified two key domains when approaching the data through the lens of mental health: (1) self-reported barriers to communicating mental health needs: parents shared uncertainty about the presence or benefit of support, a perceived lack of mental health resources and emotional support, and concerns about trust; (2) self-reported facilitators and benefits of communicating mental health needs: parents described the value of supportive team members, connecting to peer support, and speaking to a mental health professional or neutral third party. CONCLUSIONS: Parents of critically ill infants are at high risk of unmet mental health needs. Our results highlight modifiable barriers and actionable facilitators to inform interventions to improve mental health support for parents of critically ill infants.