Reporting to parents on children’s exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits
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12940_2018_Article_395.pdf
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2.51 MB
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Author(s)
Ohayon, Jennifer L
Cousins, Elicia M
Morello-Frosch, Rachel
Brown, Phil
Adamkiewicz, Gary
Brody, Julia G
Perovich, Laura J.
Ohayon, Jennifer Liss
Cousins, Elicia Mayuri
Brody, Julia Green
Date Issued
May 2018
Journal
Environmental Health
Publisher
BioMed Central
Citation
Perovich, Laura J. et al. "Reporting to parents on children’s exposures to asthma triggers in low-income and public housing, an interview-based case study of ethics, environmental literacy, individual action, and public health benefits." Environmental Health 17 (May 2018): 48 © 2018 The Author(s)
Version
Final published version
Abstract
Background
Emerging evidence about the effects of endocrine disruptors on asthma symptoms suggests new opportunities to reduce asthma by changing personal environments. Right-to-know ethics supports returning personal results for these chemicals to participants, so they can make decisions to reduce exposures. Yet researchers and institutional review boards have been reluctant to approve results reports in low-income communities, which are disproportionately affected by asthma. Concerns include limited literacy, lack of resources to reduce exposures, co-occurring stressors, and lack of models for effective reporting. To better understand the ethical and public health implications of returning personal results in low-income communities, we investigated parents’ experiences of learning their children’s environmental chemical and biomonitoring results in the Green Housing Study of asthma.
Methods
The Green Housing Study measured indoor chemical exposures, allergens, and children’s asthma symptoms in “green”-renovated public housing and control sites in metro-Boston and Cincinnati in 2011–2013. We developed reports for parents of children in the study, including results for their child and community. We observed community meetings where results were reported, and metro-Boston residents participated in semi-structured interviews in 2015 about their report-back experience. Interviews were systematically coded and analyzed.
Results
Report-back was positively received, contributed to greater understanding, built trust between researchers and participants, and facilitated action to improve health. Sampling visits and community meetings also contributed to creating a positive study experience for participants. Participants were able to make changes in their homes, such as altering product use and habits that may reduce asthma symptoms, though some faced roadblocks from family members. Participants also gained access to medical resources, though some felt that clinicians were not responsive. Participants wanted larger scale change from government or industry and wanted researchers to leverage study results to achieve change.
Conclusions
Report-back on environmental chemical exposures in low-income communities can enhance research benefits by engaging residents with personally relevant information that informs and motivates actions to reduce exposure to asthma triggers. Ethical practices in research should support deliberative report-back in vulnerable communities.
MIT Department
Massachusetts Institute of Technology. Media Laboratory
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Creative Commons Attribution
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DOI of Published Version
https://doi.org/10.1186/s12940-018-0395-9
