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1.
Perspect Biol Med ; 63(2): 327-345, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33416656

RESUMEN

Whether there is an upper limit of net risk that volunteers can consent to in research, and what that limit happens to be, has been the subject of persistent controversy in research ethics. This article defends the concept of an upper limit of risk in research against recent critics and supports the most promising approach for identifying this limit, that of finding comparator activities that are generally accepted in society and pose high levels of risk. However, high-risk activities that have been proposed as relevant comparators involve more certain benefits and confer considerable social esteem to those who take on the risks. This suggests that developing a robust approach to identifying social value, whether by developing a procedural safeguard or a systematic framework, could more effectively identify research with sufficient social value to justify high net risk. Additionally, the social status of research participants should be elevated to be more on par with others who laudably take on high risk for the benefit of others. By attending to the benefits necessary for the justification of high-risk research, the level of allowable risk will no longer be so controversial.


Asunto(s)
Investigación Biomédica/ética , Investigación Biomédica/normas , Experimentación Humana/ética , Experimentación Humana/normas , Consentimiento Informado/ética , Consentimiento Informado/normas , Ética en Investigación , Guías como Asunto , Humanos , Sujetos de Investigación/psicología , Medición de Riesgo , Valores Sociales , Factores Socioeconómicos , Organización Mundial de la Salud
2.
J Paediatr Child Health ; 55(10): 1241-1246, 2019 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-30723995

RESUMEN

AIM: This study describes the reliability and concurrent validity of the Multidimensional Illness Severity Questionnaire (MISQ), a five-item measure for capturing parents' reports of their child's illness severity. METHODS: We conducted a cross-sectional survey of parents of children participating in a paediatric research study (n = 20). We assessed parents' perceptions of illness severity using five measures: (i) the MISQ, (ii) the Lansky Play Performance scale, (iii) the Severity of Illness Scale, (iv) subscales of the Parent Experience of Child Illness and (v) general health. We calculated the internal reliability of the MISQ using Cronbach's alpha and assessed concurrent validity through correlations between scores on the MISQ and other measures. RESULTS: MISQ scores ranged from 6/21 to 17/21 (mean = 11.5). The MISQ had adequate internal consistency (Cronbach's α = 0.76) and correlated strongly with other measures. CONCLUSION: Preliminary evaluation suggests that the MISQ is an easy-to-administer and internally consistent multidimensional assessment of parent-reported illness severity.


Asunto(s)
Salud Infantil , Padres , Índice de Severidad de la Enfermedad , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Niño , Estudios Transversales , Femenino , Investigación sobre Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados
6.
Crit Care Clin ; 39(2): 341-355, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-36898778

RESUMEN

Social determinants of health (SDoH) play a significant role in the health and well-being of children in the United States. Disparities in the risk and outcomes of critical illness have been extensively documented but are yet to be fully explored through the lens of SDoH. In this review, we provide justification for routine SDoH screening as a critical first step toward understanding the causes of, and effectively addressing health disparities affecting critically ill children. Second, we summarize important aspects of SDoH screening that need to be considered before implementing this practice in the pediatric critical care setting.


Asunto(s)
Unidades de Cuidado Intensivo Pediátrico , Determinantes Sociales de la Salud , Humanos , Niño , Estados Unidos , Enfermedad Crítica , Cuidados Críticos
7.
J Palliat Med ; 25(4): 656-661, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34807737

RESUMEN

Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Adulto , Niño , Comunicación , Eticistas , Ética Clínica , Humanos
8.
J Health Care Poor Underserved ; 32(4): 1720-1733, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34803038

RESUMEN

Medical-legal partnerships (MLP) address legal needs that contribute to health inequities. Health providers express discomfort accessing legal services and a desire for greater training, however best practices remain unclear. METHODS: We conducted a scoping literature review and interviews with key informants to identify essential components of MLP training and best practices in MLP training. RESULTS: Twenty-one articles out of an initial 1,247 met criteria. Most learners were medical (11; 52%) or law (13; 62%) students or residents (12; 57%). Training was primarily led by lawyers (18; 86%). Educational approaches included didactics (15; 71%). Content was focused on skill-acquisition (18; 86%). Most training was presented as stand-alone (5; 24%) courses. Essential skills included issuespotting, adaptability, and trauma-informed care. CONCLUSION: Medical-legal partnerships make use of varied perspectives to address unmet legal needs. This review helped identify best practices in training and a need for future study on evaluation. Future research should explore how best to evaluate the effectiveness of MLP training.


Asunto(s)
Educación Interprofesional , Determinantes Sociales de la Salud , Inequidades en Salud , Humanos , Abogados
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