ArticleIntensive care medicine2012
Why substitute decision makers provide or decline consent for ICU research studies: a questionnaire study.
Article in Intensive care medicine, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
35 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Views on consent approaches used in emergency and critical care research: a rapid, systematic review.Trials · 2026Pooled it
- A Qualitative Analysis of Factors Influencing Critical Care Trial Enrollment Among Surrogates.Journal of intensive care medicine · 2022Trial
- Is there a role for physician involvement in introducing research to surrogate decision makers in the intensive care unit? (The Approach trial: a pilot mixed methods study).Intensive care medicine · 2015Trial
- Proxy decision-making about participation in palliative care research: A scoping review.Palliative medicine · 2026Article
- Evaluation of a Tablet-Based Emotion Regulation Intervention for Surrogate Decision-Makers of Patients With Critical Illness: Pilot Nonrandomized Trial.JMIR formative research · 2026Article
- ICU Care Team's Perception of Clinical Research in the ICU: A Cross-Sectional Study.Critical care explorations · 2024Article
- Ethics of non-therapeutic research on imminently dying patients in the intensive care unit.Journal of medical ethics · 2023Article
- Learning from stakeholders to inform good practice guidance on consent to research in intensive care units: a mixed-methods study.BMJ open · 2022Article
- (Re)Conceptualising 'good' proxy decision-making for research: the implications for proxy consent decision quality.BMC medical ethics · 2022Article
- Surrogate Informed Consent: A Qualitative Analysis of Surrogate Decision Makers' Perspectives.Annals of the American Thoracic Society · 2021Article
- Awareness and Perception of Healthcare Providers about Proxy Consent in Critical Care Research.Critical care research and practice · 2021Article
- Advances and challenges in conducting ethical trials involving populations lacking capacity to consent: A decade in review.Contemporary clinical trials · 2020Article
- The Attitudes of Relatives of ICU Patients toward Informed Consent for Clinical Research.Critical care research and practice · 2020Article
- Intensive care unit patients' opinion on enrollment in clinical research: A multicenter survey.PloS one · 2020Observational
- Synthesis of qualitative research studies regarding the factors surrounding UK critical care trial infrastructure.BMJ open · 2019Article
- Burden or Opportunity? Parent Experiences When Approached for Research in a Pediatric Intensive Care Unit.Ethics & human research · 2019Article
- Parental opinions regarding consent for observational research of no or minimal risk in the pediatric intensive care unit.Journal of intensive care · 2019Article
- Barriers and facilitators to clinical trial participation among parents of children with pediatric neuromuscular disorders.Clinical trials (London, England) · 2018Article
- Ethical challenges involved in obtaining consent for research from patients hospitalized in the intensive care unit.Annals of translational medicine · 2017Article
- Enrollment Challenges in Critical Care Nursing Research.American journal of critical care : an official publication, American Association of Critical-Care Nurses · 2017Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeConsent for research participation in the intensive care unit (ICU) is often obtained from a substitute decision maker (SDM). In this study we explored SDMs' reasons for declining or providing consent for research studies for critically ill adult family members.
methodsTwo questionnaires were developed, one directed at SDMs who agreed to have their relative participate in a research study (AGREE group), and another for SDMs who declined participation (DECLINE group). The questionnaires explored SDMs' opinions about research in general, timing of research approach, the informed consent process, and reasons for agreeing or declining participation.
resultsNinety-six SDMs completed the questionnaire (68 AGREE, 27 DECLINE). There were no differences between AGREE and DECLINE groups with respect to SDM demographics, perceived severity of illness of the patient, or the research study approach. The most common reasons for providing consent were potential for research to help others (91%), research is important for medical progress (88%), and trust in the medical team (87%). The most common reasons for declining consent were SDM was too anxious to consider research (67%), fear that patient would receive experimental treatment (37%), and concern about risks of the study (33%).
conclusionsSDMs who agree to have a relative participate in an ICU research study are motivated by the potential benefit to the patient and altruism. SDMs who decline research participation, while not generally opposed to research, are fearful of study-related harm or discomfort for the patient, and are too anxious to consider a research study at that time.
Indexed as
Identifiers
22120767What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.