none of which were for talks on shared decision-making; and Dr Johnson has indicated she has no financial relationships relevant to this article to disclose.Shared decision-making (SDM) depends on high-quality communication between the physician and the decision maker. The shared beliefs, values, behaviors, and traditions that make up an individual's culture affect the way he or she communicates and receives information and impacts complex decision-making. Cultural differences between medical providers and patients or their families may lead to wrong assumptions, disparate priorities, a lack of shared goals, and conflict. When it comes to SDM in cross-cultural encounters, we recommend that clinicians acknowledge their own cultural beliefs and values (including those stemming from the culture of medicine), maintain awareness of potential biases and assumptions, appreciate the complexity of patient and family identities and narratives, practice cultural humility, understand the moral relevance of culture, and respect patient and family preferences for SDM. We present a case that illustrates many of these issues.abstract
Background: Individuals of minority race/ethnicity have lower rates of participation in genomic research. This study evaluated sociodemographic characteristics associated with decisions to enroll in a pediatric critical care biorepository. Methods: Parents of children admitted to the PICU between November 2014 and May 2017 were offered to enroll their child in a biorepository using a single page opt-in consent. Missed enrollment was assessed by failure to complete the form or declining consent on the form. We conducted a retrospective chart review for sociodemographic and clinical information. Bivariate and multivariable regression analyses were performed. Results: In 4055 encounters, representing 2910 patients with complete data, 1480 (50%) completed the consent form and 1223 (83%) enrolled. We found higher odds of incomplete consent for non-English speaking parents (OR = 2.1, p < 0.0001) and parents of children of all races except non-Hispanic White (OR = 1.27–1.99, p < 0.0001). We found higher odds of declined consent in patients with Medicaid (OR = 1.67, p = 0.003) and parents of children of all races except non-Hispanic White (OR = 1.32–2.9, p < 0.0001). Conclusion: Inability to enroll patients in a critical care biorepository may be associated with several sociodemographic factors at various points in recruitment/enrollment.
Biorepository research in children raises numerous ethical questions that are heightened in the pediatric intensive care unit (PICU) setting. We conducted a cross-sectional, interview-based study of 20 adolescent/young adult (A/YA) PICU patients and 75 parents of PICU patients to elucidate perspectives on biorepository research. A/YAs had a positive attitude toward biobanking. In young adults, comprehension was higher for knowledge of a choice to withdraw and participate in the research and lower for purpose, procedures, risks, and benefits of participation. All but one A/YA wanted to have a say in whether their samples would be used. Parent views on child assent were mixed; 55% of parents favored child involvement in decisions. Efforts should be made to improve comprehension by A/YAs and involvement of A/YAs in decisions.
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