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About this paper symposium
| Panel information |
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| Panel 28. Solicited Content: Climate Change |
| Paper #1 | |
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| Parental guilt and prenatal exposures: challenges in reporting research during developmental stages | |
| Author information | Role |
| Diana Rohlman, Ph.D., Pacific Northwest Center for Translational Environmental Health Research; Oregon State University, United States | Presenting author |
| Taylor Vogel, Oregon State University, United States | Non-presenting author |
| Andrea Cassidy-Bushrow, Ph.D., Center for Allergy, Asthma and Immunology Research (CAAIR), Department of Public Health Sciences, Health Disparities Research Collaborative; Henry Ford Health, United States | Non-presenting author |
| Julie Herbstman, MSc, Ph.D., Columbia Center for Children's Environmental Health, Columbia University Irving Medical Center, United States | Non-presenting author |
| Sunil Khanna, Ph.D., Center for Global Health, College of Health, Oregon State University, United States | Non-presenting author |
| Carrie Leach, Ph.D., Center for Urban Responses to Environmental Stressors (CURES), Center for Health Equity and Community Knowledge in Urban Populations (CHECK-UP); Wayne State University, United States | Non-presenting author |
| Jennifer Straughen, Ph.D., Henry Ford Health; College of Human Medicine at Michigan State University, United States | Non-presenting author |
| Abstract | |
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Introduction. Prenatal exposure to environmental contaminants is associated with multiple adverse health effects due to the complex developmental processes that occur in utero. As these studies are conducted during pregnancy, there is a timely need to report-back the research results (RBRR) to the parent following bioethics principles. Understanding how to conduct RBRR effectively in the context of pregnant populations is crucial. Hypothesis. RBRR to prenatal cohorts includes unique ethical considerations relative to cohorts that do not assess exposure during gestation. Study population. Two cohorts participated in prenatal exposure studies (Table 1). In the first cohort of over 200 participants, two community liaisons were involved in the study design, development, data collection, and RBRR development. Additional feedback was obtained through focus groups (n=14) and surveys (n=47). In the second cohort of over 30 participants, the study was designed and developed with input from two community liaisons, who, with 6 study participants, informed RBRR development. Third, an Expert Advisory Board (EAB; n=20) of researchers, ethicists, and community liaisons was convened to characterize ethical concerns related to RBRR within pregnancy cohorts. Methods. Using qualitative and quantitative methods, data from focus groups, surveys, and the EAB were assessed to understand how to conduct RBRR within pregnancy cohorts (Figure 1). Specifically, findings were mapped to the principles of bioethics—respect for autonomy, beneficence, nonmaleficence, and justice. Results. Community liaisons raised several key concerns: 1) RBRR may unintentionally increase parental guilt, as parents might feel overwhelmed with expectations or fear that they are not doing enough for their child or family; 2) the time lag between data collection and returning results, and; 3) RBRR might fail to account for cultural or community-specific practices or concerns. Participants also appreciated when RBRR was conducted in a culturally sensitive or community-specific manner, noting that these approaches were more positive in tone, avoiding adding to the mental and emotional toll many parents face while managing competing priorities around their child’s health. Within the first cohort, subsequent feedback from surveys of study participants revealed a strong motivation to view their research results (n=94%). Written survey responses (33 of 47 surveys) revealed three major themes regarding RBRR: 1) worry regarding the results (n=16); 2) feeling reassured upon viewing the results (n=8), and; 3) wanting to learn more (n=6). The EAB identified additional considerations: i) legal/political contexts unique to pregnancy; ii) balancing conflicting priorities between the fetus and parent; iii) acknowledging the cumulative stressors of pregnancy (e.g., increased medical visits, concern about fetal health, work/life balance), and iv) recognizing pregnancy as a critical developmental period for the fetus, which influences parental decisions and behavior. To address these challenges, recommendations include the ongoing involvement of community liaisons in the RBRR development and dissemination, the sensitive and appropriate inclusion of optional exposure reduction methods, and efforts to understand the unintended consequences of RBRR within the specific pregnancy cohort (e.g., cultural and traditional practices that may be impacted by mitigation strategies). |
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| Paper #2 | |
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| The Benefits of Providing Personal Air Sampling Results to Study Participants | |
| Author information | Role |
| Patrick Ryan, Ph.D., Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, United States | Presenting author |
| Chris Wolfe, M.S., Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, United States | Non-presenting author |
| Cole Brokamp, Ph.D., Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, United States | Non-presenting author |
| Ashley Turner, Ph.D., Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, United States | Non-presenting author |
| Sherrill Ingram, Division of Biostatistics and Epidemiology, Cincinnati Children’s Hospital Medical Center, United States | Non-presenting author |
| Erin Haynes, DrPH, M.S., Department of Epidemiology, College of Public Health, University of Kentucky, United States | Non-presenting author |
| Abstract | |
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Introduction: Providing study participants with their individual-level data is considered best practice in environmental health research and provides benefits to both participants and researchers. However, prior studies using personal air monitors to identify specific times and locations of elevated air pollution exposures have not provided this data to study participants. The objectives of this study were to 1) engage study participants and caregivers to co-develop a report-back document and 2) determine whether this information influenced participants’ knowledge, attitudes, and beliefs regarding air pollution and research. Hypotheses: Providing study participants and caregivers with their individual results from personal air monitoring in an understandable and accessible format will significantly increase their perceived knowledge, attitudes, and awareness of air pollution. Study Population: Adolescents (n = 110) and their caregivers who completed personal air monitoring as part of a research study were included in this analysis. Methods: In the first phase of this research, we enrolled eight participants and their caregivers in focus groups to provide feedback and input on the development of personal air pollution report-back documents. Following the development of the report-back document we invited all participants and caregivers (n = 110) to receive their individual study results and measured changes in knowledge, attitudes, and beliefs regarding air pollution before and after receiving their individual data using questionnaires. Results: Focus groups of study participants identified five elements to incorporate in the report back document including: 1) background and rationale for the study 2) visualizing the study data, 3) interpretation of the study data, 4) challenges in study participation, and 5) providing the document in an electronic format. Based on focus group input an electronic and interactive HTML report was developed containing a summary of each participant’s personal exposure to air pollution recorded during their study participation, interactive maps of times and locations where exposures were recorded, information about air pollution and potential sources, and strategies to reduce their exposure. Participating caregivers (n = 68, mean age 50 years) were primarily female (93%) and White (81%) while adolescents (n = 37, mean age 19.8) were 41% female and 76% White. Among both caregivers and adolescents, we observed changes in knowledge, attitudes, and beliefs after receiving their results with significant increases in understanding of ways to reduce exposure, increased excitement to use personal air monitors, and increased awareness of locations, times, and activities that may increase air pollution exposures. Conclusions: Providing research participants the results of their personal air monitoring increases awareness of times, locations, and activities where exposures are elevated. Future studies may consider reporting back results as a potential intervention to decrease exposure to air pollution and improve health outcomes. |
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| Paper #3 | |
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| Return of research results as a critical component of engagement and retention in longitudinal research | |
| Author information | Role |
| Julie Herbstman, Ph.D., Columbia Center for Children’s Environmental Health, Columbia University, United States | Presenting author |
| Jyoti Angal, MPH, CIP, Avera Health, United States | Non-presenting author |
| Grace Cammarata, Columbia Center for Children’s Environmental Health, Columbia University, United States | Non-presenting author |
| Anabel Cole, M.S., MPH, Columbia Center for Children’s Environmental Health, Columbia University, United States | Non-presenting author |
| Elissa Faro, Ph.D., University of Iowa, United States | Non-presenting author |
| Kylie Wheelock Riley, Columbia Center for Children’s Environmental Health, Columbia University, United States | Non-presenting author |
| Diana Rohlman, Ph.D., College of Health, Oregon State University, United States | Non-presenting author |
| Marcela Tamayo-Oritz, Ph.D., Columbia Center for Children’s Environmental Health, Columbia University, United States | Non-presenting author |
| Maricela Ureno, M.S., Columbia Center for Children’s Environmental Health, Columbia University, United States | Non-presenting author |
| Abstract | |
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Introduction: Currently, study participants are often regarded as research partners rather than research subjects. Both researchers and the public generally agree [Korfmacher and Brody 2023] that it is the moral obligation of researchers to provide study results to participants in a manner that it is understandable, accessible, useful, and applicable to their circumstances. Results can be presented in aggregate form as a summary of study findings or at the individual level, where measurements recorded from one or several study visits are returned to the individual participant. In both cases, it is incumbent on the research team to plan for and to develop a strategy to implement these activities and respond to subsequent queries as part of the research process. Methods: We have implemented a process to return research results at both the individual and aggregate levels for some of the environmental exposures we have measured and studied during pregnancy, including polycyclic aromatic hydrocarbons (PAH). We have evaluated these processes using quantitative and qualitative surveys to gain insight into study participant reaction, even when results lack a discrete connection to human health [Riley et al. 2024]. Our studies are part of the national Environmental influences on Child Health Outcomes (ECHO) consortium cohort, which consists of 69 individual cohort sites. In 2023, ECHO hosted a workshop including both experts and study participants, which informed a strategy for returning results to participants across the consortium. Results: In our cohort, we report that over 80% of study participants who responded to our evaluation survey indicated that the reports on PAH added “a lot” to their knowledge about PAH, suggesting that the report was useful in increasing understanding about the research topic and research results. Open-ended text responses indicated that while some participants felt worried or surprised after receiving their personal results, 94% of participants reported being glad to have received their report. In ECHO, we have developed a strategy for returning research results to consortium cohort participants in aggregate, which is available to study participants (and the public) on the consortium webpage. A Task Force within the consortium was created to develop a strategy for returning individual-level results. This task force incorporates input from the ECHO Participant Action Board members. The first individual reports to be returned across the consortium consist of results from the Dietary History Questionnaire (DHQ) and will serve as a pilot for developing a strategy to return more diverse results. The DHQ will be returned beginning in January 2025 only to participants who express their interest and consent to receive them. Each cohort site that is part of the ECHO consortium will be responsible for facilitating the return of results to their local participants. Discussion/Conclusion: Return of aggregate and individual results is a critical component of research and enhances study participant engagement. Based on our experience, these activities require detailed upfront and ongoing planning and dedicated resources. The activities of the ECHO consortium can provide a template for other groups who would like to implement return of research results. |
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Engaging Families in Science: Effective and Ethical Report-Back of Environmental Health Research Results
Submission Type
Paper Symposium
Description
| Session Title | Engaging Families in Science: Effective and Ethical Report-Back of Environmental Health Research Results |