RESUMEN
PURPOSE: To investigate ethical issues associated with fertility preservation (FP) in transgender youth based on reports of patients and their parents. METHODS: Our qualitative study involved in-person interviews with 54 subjects (35 patients and 19 parents). Interviews were audio recorded, transcribed, and verified. Each subject completed a demographic questionnaire, and each patient's medical chart was reviewed for additional information. We analyzed the data using inductive thematic content analysis. RESULTS: Themes that emerged included a range of desires and ambivalence about having genetically related children, variability in understanding the potentially irreversible impact of gender affirming hormones (GAHs) on fertility, use of adoption, and the impact of age on decision-making. Subjects (patients and parents) noted barriers to FP, such as cost and insurance coverage. Several parents expressed concern that their transgender children may have future regret about not attempting FP. Both transgender youth and their parents felt FP was an important precaution. CONCLUSIONS: Our study took advantage of the richness of personal narratives to identify ongoing ethical issues associated with fertility preservation in transgender youth. Transgender youth and their parents did not fully understand the process of FP, especially regarding the effects of GAHs, had fears that FP could reactivate gender dysphoria, and noted barriers to FP, such as cost, highlighting economic disparity and lack of justice. These findings highlight ethical issues involving the adequacy of informed consent and economic injustice in access to FP despite expressed interest in the topic.
Asunto(s)
Preservación de la Fertilidad/ética , Fertilidad/ética , Disforia de Género/epidemiología , Personas Transgénero/psicología , Adolescente , Niño , Toma de Decisiones , Femenino , Disforia de Género/psicología , Humanos , MasculinoRESUMEN
Caring for a child in a pediatric intensive care unit is emotionally and physically challenging and often leads to conflict. Skilled mediators may not always be available to aid in conflict resolution. Careproviders at all levels of training are responsible for managing difficult conversations with families and can often prevent escalation of conflict. Bioethics mediators have acknowledged the important contribution of mediation training in improving clinicians' skills in conflict management. Familiarizing careproviders with basic mediation techniques is an important step towards preventing escalation of conflict. While training in effective communication is crucial, a sense of fairness and justice that may only come with the introduction of a skilled, neutral third party is equally important. For intense conflict, we advocate for early recognition, comfort, and preparedness through training of clinicians in de-escalation and optimal communication, along with the use of more formally trained third-party mediators, as required.
Asunto(s)
Muerte Encefálica/diagnóstico , Toma de Decisiones Clínicas/ética , Comunicación , Conflicto Psicológico , Cuidados Críticos/ética , Disentimientos y Disputas , Negociación , Accidentes de Tránsito , Adulto , Hemorragia Cerebral/cirugía , Preescolar , Humanos , Unidades de Cuidado Intensivo Pediátrico , Masculino , InconscienciaRESUMEN
BACKGROUND: Pediatric Asthma Assessment tools used to guide the weaning of inhaled therapies during inpatient hospitalization require further evaluation and validation. This study aimed to compare 2 asthma assessment tools: an asthma scale versus an asthma score. METHODS: A prospective, physician-blinded, comparison study was conducted in 2 separate 6-week phases of patients > 2 y old admitted to a tertiary care children's hospital with status asthmaticus between July and November 2014. The asthma scale categorized 5 components (oxygen, auscultation, dyspnea, breathing frequency, and pulse oximetry) into 1 of 3 respiratory assessments: mild, moderate, or severe. The asthma score used a sum of the components, resulting in a score of 1-15. Study tool predictability was measured using a metric based on hours on continuous albuterol, with area under the curve ≥ 0.8 indicating good predictability. Agreement between clinicians was measured using the Cohen kappa statistic. Study tool clinical correlation was measured using Spearman coefficient. Usability was evaluated using web-based surveys. RESULTS: Phase 1 included 1,971 assessments (97 unique subjects), whereas phase 2 included 607 assessments (69 unique subjects). Using the continuous albuterol metric, predictability of the asthma scale had an area under the curve of 0.62 versus the asthma score area under the curve of 0.80. Agreement early in hospitalization for the asthma scale was kappa = 0.34 (95% CI 0.18-0.5; n = 84) versus kappa = 0.55 (95% CI 0.35-0.76; n = 44) for the asthma score. Agreement late in hospitalization for the asthma scale was kappa = 0.38 (95% CI 0.17-0.59; n = 66) versus kappa = 0.41 (95% CI 0.13-0.69; n = 33) for the asthma score. Clinical correlation for the asthma scale (no. = 1,908) was r = 0.57 (P < .001) versus r = 0.80 (P < .001) for the asthma score (no. = 558). Mean asthma scale usability was 3.38 versus 3.68 for the asthma score. CONCLUSIONS: The asthma score showed better clinical predictability and clinical correlation compared to the asthma scale. Numerical scores provided more objective assessments compared to categorical scores. Validated scoring tools such as the asthma score are crucial to the success of management of inpatient asthma care.
Asunto(s)
Asma , Estado Asmático , Albuterol , Asma/diagnóstico , Niño , Hospitalización , Humanos , Estudios ProspectivosRESUMEN
Background Full disclosure of patient safety events (PSE) is desired by patients and their families, is required by the Joint Commission and many state laws, and is vital to improving patient outcomes. A key barrier to consistent disclosure of patient safety events is a self-reported lack of proper training. Physicians must be trained to recognize when a PSE has occurred and effectively carry out disclosure, all while caring for a patient who is actively experiencing the consequences of an unintended outcome. Immersive simulation provides the opportunity to practice this complex skill. Objective To develop and evaluate a simulation-based workshop for pediatric residents on the disclosure of patient safety events. Methods A workshop in PSE disclosure was developed according to literature review, expert consultation, and feedback from hospital administration. The three-hour workshop included a simulated PSE with a subsequent standardized debriefing, interactive didactic session, and additional simulation-based hands-on practice in disclosure. Participants completed an anonymous survey at one-week and three-months post workshop, assessing workshop satisfaction, subsequent clinical experience, and perceived change to their practice. Results During the one-year study period, 27/31 (87.0%) second year residents completed the workshop. At the one-week follow-up, all study participants reported increased confidence and preparedness in their ability to lead the initial disclosure conversation. All study participants felt that the simulated scenarios were realistic and relevant to their current clinical duties and 33.3% (n=9) stated that they would like to repeat this workshop prior to completion of their training. At the three-month follow-up, 29.6% (N=8) of study participants reported involvement in the disclosure of a patient safety event since the workshop with all eight reporting feeling adequately prepared by the workshop for this experience. Study participants indicated that post training they were more likely to engage the attending physician, risk management and patient relations in the disclosure conversation (p <=0.05). The estimated cost of this simulation training for 27 residents was $6,993, not accounting for the 39 hours per clinician facilitator. Conclusions Immersive simulation is uniquely suited for teaching difficult conversation skills that are encountered during acute care, including the disclosure of patient safety events. While hands-on practice is critical, faculty and simulation resources required for continued implementation may not be sustainable long-term. Future training curricula should leverage creative and innovative adult-learning techniques to reach a wide range of members of the care team with less resource utilization.
RESUMEN
OBJECTIVE: Limited data exist on medical error disclosure in pediatrics. We sought to assess physicians' attitudes toward error disclosure to parents and pediatric patients. METHODS: An anonymous survey was distributed to 1200 members of the American Academy of Pediatrics. Surveys included 1 of 4 possible cases that only varied by patient age (16 or 9 years old) and by whether the medical error resulted in reversible or irreversible harm. Statistical analyses included chi-square, Bonferroni-adjusted P values, Fisher's exact test, Wilcoxon signed rank test, and logistic regressions including key demographic factors, patient age, and error reversibility. RESULTS: The response rate was 40% (474 of 1186). Overall, 98% of respondents believed it was very important to disclose medical errors to parents versus 57% to pediatric patients (P < .0001). Respondents believed that medical errors could be disclosed to developmentally appropriate pediatric patients at a mean age of 12.15 years old (SD 3.33), but not below a mean age of 10.25 years old (SD 3.55). Most respondents (72%) believed that physicians and parents should jointly decide whether to disclose to pediatric patients. When disclosing to pediatric patients, 88% of respondents believed that physicians should disclose with the parents present. Logistic regressions found only patient age (odds ratio 18.65, 95% confidence interval 9.20-37.8) and error reversibility (odds ratio 2.90, 95% confidence interval 1.73-4.86) to affect attitudes toward disclosure to pediatric patients. Respondent sex, year of medical school graduation, and area of practice had no effect on disclosure attitudes. CONCLUSIONS: Most respondents endorse disclosing medical errors to parents and older pediatric patients, particularly when irreversible harm occurs.