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
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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DOI：
10.1186/s12940-018-0395-9
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发表时间：
2018-05-21
影响因子：
6
通讯作者：
Brody, Julia Green
中科院分区：
文献类型：
--
作者：
Perovich, Laura J.;Ohayon, Jennifer Liss;Brody, Julia Green
背景：关于内分泌干扰物对哮喘症状影响的新证据表明，通过改变个人环境来减少哮喘的新机会。知情权伦理支持将这些化学品的个人结果返回给参与者，这样他们就可以做出减少暴露的决定。然而，研究人员和机构审查委员会一直不愿批准低收入社区的结果报告，因为低收入社区受哮喘的影响不成比例。令人担忧的问题包括识字能力有限、缺乏减少暴露的资源、共同存在的压力源以及缺乏有效报告的模式。为了更好地了解在低收入社区返回个人结果的伦理和公共卫生影响，我们在绿色住房哮喘研究中调查了父母了解他们孩子的环境化学和生物监测结果的经历。方法：绿色住房研究测量了2011-2013年在波士顿和辛辛那提“绿色”翻新的公共住房和对照地点的室内化学品暴露、过敏原和儿童哮喘症状。我们为研究中孩子的父母编写了报告，包括他们孩子和社区的结果。我们观察了报告结果的社区会议，2015年波士顿大都会居民参加了关于他们报告经验的半结构化访谈。结果：反馈得到了积极的响应，有助于加深了解，在研究人员和参与者之间建立了信任，并促进了改善健康的行动。抽样访问和社区会议也有助于为参与者创造积极的学习体验。参与者能够在家里做出改变，比如改变产品的使用和习惯，这可能会减少哮喘症状，尽管一些人面临家人的路障。参与者也获得了医疗资源，尽管一些人觉得临床医生没有反应。参与者希望政府或行业做出更大规模的改变，并希望研究人员利用研究结果来实现改变。结论：低收入社区环境化学品暴露的报告可以通过让居民参与个人相关信息来提高研究效益，这些信息可以告知并激励行动，以减少哮喘诱因的暴露。研究中的道德实践应该支持脆弱社区的审议报告。
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 semistructured 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.