• Marie Labruyère, Nicolas Meunier-Beillard, Fiona Ecarnot, Audrey Large, François Aptel, Jean-Baptiste Roudaut, Pascal Andreu, Auguste Dargent, Jean-Philippe Rigaud, and QuenotJean-PierreJPDepartment of Intensive Care, François Mitterrand, University Hospital, Dijon, France; Clinical Epidemiology, University of Burgundy, INSERM CIC 1432, Dijon, France; Lipness Team, INSERM Research Centre LNC-UMR1231 and LabEx LipSTIC, Un.
• Department of Intensive Care, François Mitterrand, University Hospital, Dijon, France. Electronic address: marie.labruyere@chu-dijon.fr.
• J Crit Care. 2022 Apr 1; 68: 141-143.

PurposeWe investigated experiences of families who provide consent for research on behalf of a loved-one hospitalized in intensive care (ICU).MethodsMulticentre, qualitative, descriptive study using semi-directive interviews in 3 ICUs. Eligible relatives were aged >18 years, and had provided informed consent for a clinical trial on behalf of a patient hospitalized in ICU. Interviews were conducted from 06/2018 to 06/2019 by a qualified sociologist, recorded and transcribed.ResultsFifteen relatives were interviewed; average age 50.3 ± 15 years. All emphasized their interest in clinical research, seeing it as a duty. Involving their loved-one in research allowed them to find meaning in the events. Participants underlined that trust in caregivers and communication are determinant. The strict regulation of research was perceived as a guarantee of safety. Participants felt they lacked the intellectual capacity and knowledge to question explanations. The greatest fear was not that they might incur a risk for the patient, but rather, that they might deprive the patient of a chance at a cure.ConclusionAcceptance of research opportunities by relatives on behalf of decisionally-incapacitated patients is underpinned by trust in the physicians and the legislative framework. Communication and the quality of information provided by the caregivers are key.Copyright © 2020 Elsevier Inc. All rights reserved.

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