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Background: In June 2021, the Injury Research Engagement Project (I-REP) was established. In 2022, we preformed focus group analysis with patients/caregiver and researchers that resulted in themes in preferences, motivations, and best practices to increase participation in trauma research. The importance of trust and well-established relationships was common across all groups. In this study, we aimed to further evaluate preferences regarding research procedures and outcomes, and develop a panel for sustained patient engagement.
Methods: We performed a multiphase, mixed methods study to elicit trauma stakeholders' perspectives regarding aspects of research. Previously published phase 1 involved focus group analysis. Phase 2 vignette-based surveys and phase 3 panel formation are described here. One survey was completed by patients/caregivers, and the second by trauma researchers. We compared the responses using independent t-tests. This was followed by a webinar and development of an I-REP panel of patients/caregivers.
Results: 60 patients/caregivers and 114 researchers participated in the online surveys, with completion rates of 68% and 69%, respectively. The majority of patients/caregivers were >45 years, female (66.7%), and >3 years out from their or their family member's injury (68.6%). The majority of the researchers were >35 years and male (56.2%). Participants were asked to gauge their perceptions of different research scenarios. The analysis identified themes emerging across groups. Several survey findings differed from phase 1, including motivations to participate (payment) and consent preferences (timing, approach). Racial and ethnic demographics of the participants were not collected.
Conclusions: Engaging trauma stakeholders results in research more relevant to patients' needs and priorities. Qualitative engagement methods that intentionally include a more diverse population and determining the appropriate format for specific questions may lead to results that are be more generalizable. The educational webinar was well received, and several participants opted to serve as I-REP panelists to collaborate with trauma researchers moving forward.
Level Of Evidence: IV.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647282 | PMC |
http://dx.doi.org/10.1136/tsaco-2024-001466 | DOI Listing |
Qual Life Res
September 2025
The Kids Research Institute Australia, The University of Western Australia, P.O. Box 855, West Perth, WA, 6872, Australia.
Purpose: CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy. Greater understanding of the smallest meaningful improvements for individuals with CDD in clinical trials and practice is needed for a person-centred approach to treatment efficacy. This study explored how parent/caregivers of people with CDD understood meaningful improvements and described change for priority functional domains including communication, gross motor, fine motor, feeding.
View Article and Find Full Text PDFCommunity Ment Health J
September 2025
Department of Psychiatry, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, 10027, USA.
Guided by the Ottawa Decision Support Framework, we created a depression care decision aid for Latinx and African American individuals with major depressive disorder (MDD) at a network of Federally Qualified Health Centers. We surveyed 94 African American and Latinx individuals with MDD about their decision making needs. Focus groups elaborated on these preferences.
View Article and Find Full Text PDFJ Behav Med
September 2025
Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, 3333 Burnet Avenue, MLC 7039, Cincinnati, OH, 45229, USA.
Randomized pretest, posttest, follow-up (RPPF) designs are widely used in longitudinal behavioral intervention research to evaluate the efficacy of treatments over time. These designs typically involve random assignment of participants to treatment and control conditions, with assessments conducted at baseline, immediately post-intervention, and during the follow-up period. Researchers primarily focus on determining whether the intervention is more effective than the control condition at post-treatment and whether these effects are sustained or change over time.
View Article and Find Full Text PDFParasitol Res
September 2025
Laboratório de Parasitologia, Instituto Biomédico, Universidade Federal Fluminense (UFF), Bloco E, 5º Andar, 510-525,Outeiro São João Batista S/N, Niterói, Rio de Janeiro, 24020-141, Brazil.
Brazil is a major pig-producing country with production systems that include both industrial and family farms. In these facilities, parasitic diseases present an obstacle to production. This study aimed to estimate the prevalence and risk factors of the gastrointestinal parasites that infect pigs as well as to provide information for producers through extension activities.
View Article and Find Full Text PDFIntroduction: Distraction methods such as virtual reality and cold vibration devices (Buzzy) are recommended during vascular access. Few studies focused on distraction during intramuscular injection.
Methods: This study evaluated the effect of distraction methods on procedure-related pain, fear, and anxiety during the intramuscular injection in children aged 5 to 12 years in the pediatric emergency department.