Rationale: Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children.
Objective: We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness.
Methods: To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013.
Results: We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research.
Conclusion: Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational.
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http://dx.doi.org/10.1016/j.socscimed.2016.06.017 | DOI Listing |
Sci Rep
January 2025
School of Biotechnology, Amrita Vishwa Vidyapeetham, Amritapuri, Kerala, India.
Pyomelanogenic P. aeruginosa, frequently isolated from patients with urinary tract infections and cystic fibrosis, possesses the ability to withstand oxidative stress, contributing to virulence and resulting in persistent infections. Whole genome sequence analysis of U804, a pyomelanogenic, multidrug-resistant, clinical isolate, demonstrates the mechanism underlying pyomelanin overproduction.
View Article and Find Full Text PDFJ Cyst Fibros
January 2025
The Prince Charles Hospital, Brisbane, Queensland, Australia; Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia; Child Health Research Centre, The University of Queensland, Brisbane, Queensland, Australia. Electronic address:
Background: People with cystic fibrosis (CF) are recommended to wear face-masks when in healthcare settings. We previously demonstrated that face-masks significantly reduce the release of Pseudomonas aeruginosa (P. aeruginosa) aerosols during coughing in adults with CF.
View Article and Find Full Text PDFBMJ Open Respir Res
January 2025
Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Background: Cystic fibrosis (CF) is associated with a historically high treatment burden which causes anxiety and exhaustion for parents of children with CF, especially in the early years of a child's life. Recently, a new medication, elexacaftor/tezacaftor/ivacaftor (ETI), has become available to some people with CF, which has had a significant impact on the quality of life of older children and adults. This medication will soon be available for children ages 2-5 in the UK.
View Article and Find Full Text PDFInfection
January 2025
Department of Thoracic Surgery, Saarland University, 66421, Homburg/Saar, Germany.
Background: Lung transplantation is the ultimate treatment option for patients with advanced cystic fibrosis. Chronic colonization of these recipients with multidrug-resistant (MDR) pathogens may constitute a risk factor for an adverse outcome. We sought to analyze whether colonization with MDR pathogens, as outlined in the German classification of multiresistant Gram-negative bacteria (MRGN), was associated with the success of lung transplantation.
View Article and Find Full Text PDFEur J Pediatr
January 2025
Service de Physiologie Pédiatrique-Centre du Sommeil-CRMR Hypoventilations Alvéolaires Rares, INSERM NeuroDiderot, Université Paris-Cité, AP-HP, Hôpital Robert Debré, Paris, France.
Unlabelled: It is known that in most cases of congenital central hypoventilation syndrome (CCHS), apnoeas and hypoventilation occur at birth. Nevertheless, a detailed description of initial symptoms, including pregnancy events and diagnostic tests performed, is warranted in infants with neonatal onset of CCHS, that is, in the first month of life. The European Central Hypoventilation Syndrome Consortium created an online patient registry from which 97 infants (44 females) with CCHS of neonatal onset and PHOX2B mutation from 10 countries were selected.
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