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
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 dec...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
BioMed Central
2018
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| Online Access: | http://hdl.handle.net/1721.1/115981 https://orcid.org/0000-0001-5890-6487 |
| _version_ | 1826212248532549632 |
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| author | 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 Perovich, Laura Jones |
| author2 | Massachusetts Institute of Technology. Media Laboratory |
| author_facet | Massachusetts Institute of Technology. Media Laboratory 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 Perovich, Laura Jones |
| author_sort | Ohayon, Jennifer L |
| collection | MIT |
| description | 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. |
| first_indexed | 2024-09-23T15:18:42Z |
| format | Article |
| id | mit-1721.1/115981 |
| institution | Massachusetts Institute of Technology |
| language | English |
| last_indexed | 2024-09-23T15:18:42Z |
| publishDate | 2018 |
| publisher | BioMed Central |
| record_format | dspace |
| spelling | mit-1721.1/1159812022-09-29T14:07:56Z 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 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 Perovich, Laura Jones Massachusetts Institute of Technology. Media Laboratory Perovich, Laura Jones 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. 2018-05-30T17:48:47Z 2018-05-30T17:48:47Z 2018-05 2017-12 2018-05-27T03:31:12Z Article http://purl.org/eprint/type/JournalArticle 1476-069X http://hdl.handle.net/1721.1/115981 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) https://orcid.org/0000-0001-5890-6487 en https://doi.org/10.1186/s12940-018-0395-9 Environmental Health Creative Commons Attribution http://creativecommons.org/licenses/by/4.0/ The Author(s). application/pdf BioMed Central BioMed Central |
| spellingShingle | 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 Perovich, Laura Jones 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 |
| title | 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| url | http://hdl.handle.net/1721.1/115981 https://orcid.org/0000-0001-5890-6487 |
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