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  • NIMHD Investigator Forums on the Impact of COVID-19 on Research Communities

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    Jennifer Alvidrez, Ph.D.
    Rick Berzon, Dr.P.H., P.A.
    Dorothy Castille, Ph.D.
    Nancy L. Jones, Ph.D., M.A.
    CDR Nadra Tyus, Dr.P.H., M.P.H.
    Division of Scientific Programs

    The impact of the COVID-19 outbreak has strained daily life for people living in the United States, affecting nearly every sector including biomedical research. The disruption has also disproportionally affected the lives and livelihoods of populations that experience health disparities, which are also the populations that NIMHD’s research addresses.

    To provide an opportunity to better understand the impact of COVID-19 on researchers and research funded by the institute, NIMHD hosted four COVID-19 NIMHD Investigator Forums this summer. NIMHD staff who hosted the events were Drs. Jennifer Alvidrez, Rick Berzon, Dorothy Castille, Nancy Jones and Nadra Tyus. We knew that the COVID-19 pandemic created many challenges for our research community and learned of the creative strategies they developed to navigate these challenges using their extensive connections with health disparity communities. We structured the forum to hear directly from NIMHD Principal Investigators (PIs) about their observations and thoughts in three areas:

    1) Impact of COVID-19 on the communities where research is conducted
    2) Strategies to modify recruitment, data collection, and/or intervention protocols
    3) Understanding and addressing the impact of the pandemic on study outcomes.

    First, the NIMHD research community expressed gratitude to be able to share their views on the impact of COVID-19 on their communities and their research teams, as well as to learn from their colleagues, and in some cases, form new collaborations. Although there were nuanced differences in experience and outcomes among the different health disparity communities, the researchers noted that these communities shared many similarities.

    Addressing the impact of the pandemic on the communities where the research is conducted.

    Nearly all research activities involving in-person contact had been stopped due to the pandemic. These decisions were made both out of concern for the burden imposed on these communities by COVID-19, and with caution to keep them and the research staff safe. Direct impact on these communities was seen with respect to COVID-19 cases, hospitalizations, and deaths, but they were also indirectly impacted, with multiple-sector disruptions effecting the community members’ wellbeing. On request by their community partners, many NIMHD investigators helped provide COVID-19 health information and linkages to resources and services. NIMHD PIs developed new partnerships to mitigate COVID-19 risks and enhance access to preventive measures in these communities; and at the request of their communities, they have increased their involvement in providing direct care and in helping navigate the available resources.

    Strategies to modify recruitment, data collection, and/or intervention protocols.

    Many investigators worked with their research staff and communities to modify their recruitment, data collection and intervention protocols. Investigators observed a general willingness of research participants to engage in online or virtual data collection and interventions. Some noted an increased enthusiasm to participate among individuals with more free time due to work or school closures. Investigators also shared suggestions on how they overcame connectivity barriers that made virtual participation challenging in some geographic areas or within some populations. Many surveys and behavioral interventions were modified for online, virtual or telephone collection. Although generally feasible and acceptable, these remote strategies were not always possible for participants with limited internet access, connectivity issues, or smart phones with limited data plans. Interestingly, several PIs noted that some participants preferred telephone contact over web meeting platforms like Zoom, to preserve confidentiality in more crowded living arrangements.

    Many investigators reported specific challenges regarding biological specimen collection. Often, the laboratories had limited capabilities, and some areas encountered long delays in workflow because the laboratories were shipping biospecimens to other facilities for processing and analysis. Some investigators piloted mail-in biological specimen collections and one even mentioned considering a physical pick-up service. However, samples that required blood draws could not be collected remotely.

    For studies that depended on recruitment in clinical settings, PIs were acutely sensitive to the increased demands of their clinical colleagues. Re-starting these studies required modifications to assure that they could work in the new paradigms of clinical care during a pandemic. Some projects, including those done in clinical settings or in schools, remained in a holding patterns, with investigators waiting to see how long the interruption would last before deciding whether to move to virtual participation or end enrollment early.

    Understanding and addressing the impact of the pandemic on study outcomes.

    The research community was especially aware of the fact that the pandemic would affect many of the key pathways and outcomes for their projects. Most investigators who had resumed data collection were collecting COVID-19-related data from participants to be able to tease out COVID-19-related effects on study outcomes. However, for some projects, the outcomes of interest were impacted so dramatically that controlling for COVID-19 related factors would not be sufficient. For example, school bullying does not occur in the same way when children are not in the school.

    Investigators reflected that reporting study findings that occurred during the pandemic would need to explain issues such as missing data, lower enrollment, and the lack of definitive conclusions for research during this period. They hoped that scientific journals and NIH would provide guidance on how research is presented and interpreted to account for the impact of the pandemic on study outcomes.

    Overall, it was clear from these investigator forums that the NIMHD research community is passionate about making a difference to the communities with which they are involved. Many of the investigators, research staff, and community collaborators are personally experiencing higher levels of stress due to the pandemic. Not surprisingly, the NIMHD research community continues to face these unprecedented challenges with creativity, flexibility, and tremendous resilience.


  • Can Paid Maternity Leave Help Address Disparities in Maternal Mortality?

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    By Rada Dagher, Ph.D., M.P.H.
    Program Director
    Division of Scientific Programs
    Clinical and Health Services Research
    National Institute on Minority Health and Health Disparities

    Maternal mortality rates in the United States have reached an all-time high. While these rates have dropped globally in the last few decades1, in the United States, they have more than doubled between 1987 and 20152. The picture is even grimmer for racial and ethnic minority communities, where African American and American Indian/Alaska Native women have the highest maternal mortality rates of all racial/ethnic groups2.

    While most of the discussions about the maternal mortality crisis focus on the physical causes of death, the relationship between maternal mental health and mortality rates is largely ignored. For example, postpartum depression leads the list of mental health conditions affecting new mothers, and women experiencing this disorder may have suicidal thoughts and thoughts of harming the baby3. The novel coronavirus (SARS-CoV-2) pandemic that is causing COVID-19 disease outbreaks is another factor to consider. Due to social distancing, women have much lower access to the usual support systems (e.g. family, doulas) that promote their mental health during the vulnerable period of transitioning into motherhood. Recently published data from China on the impact of the COVID-19 pandemic suggests increased rates of postpartum depression4 among Chinese women. Moreover, a recent report from a convenience sample of U.S. mothers of children of ages 0-18 months, shows elevated depression (34.1%) and anxiety (34.6%) rates5. Yet, the currently proposed interventions to address maternal mortality do not consider approaches to prevent and/or treat postpartum depression. One such approach is providing paid leave for new mothers.

    Research has consistently shown that access to paid leave is associated with better maternal mental health6. For example, my research on Minnesota mothers has shown that taking up to six months of leave after childbirth is associated with decreased postpartum depressive symptoms, and an employer’s paid leave policy predicted longer leaves7. Notably, the U.S. is one of two countries in the world (the other is Papua New Guinea) that do not have a national paid leave law8. Thus, women’s access to paid leave is contingent on their employer’s policy or the state they reside in. Only eight U.S. states and the District of Columbia have some form of paid leave policy, but none provide full wage replacement9. Without mandated federal policies, only about 15% of workers have paid maternity leave.

    This lack of a national paid leave law lends itself to racial and ethnic disparities in access to leave benefits, especially given the occupational segregation and workplace discrimination in the United States. For example, African American and Hispanic mothers are more likely than their White counterparts to report being fired by an employer for taking leave after childbirth or quitting their jobs after childbirth10. Three out of 10 discrimination claims were filed by African American women between 2011 and 201511. These claims ranged from being fired for taking maternity leave, being denied a promotion or raise due to pregnancy, having inadequate maternity leave allowance, and having to endure physically taxing work conditions or extreme manual labor during pregnancy11. California’s Paid Leave Program is an example of how paid leave can have a positive impact. Prior to this law, African American women took an average of a week of leave after childbirth compared to four weeks for White women12. After the program was implemented, the average maternity leave taken by both African American and White women increased to seven weeks12.

    Another example is a study that evaluated leave policy reform in Norway, which provided four months of paid maternity leave for women13. The reform was associated with a range of better outcomes for Norwegian mothers. This included lower body mass index, obesity, blood pressure and pain, improved mental health and better self-reported health. The reform also lowered the likelihood of smoking and increased engagement in vigorous exercise13. It is notable that countries where maternal mortality rates have significantly dropped (~ -50%) in the past few decades (e.g., France, Germany, Sweden), have generous paid leave laws.

    Maternity leave provides new mothers with the time to adapt to multiple physical, social, and psychological changes:

    • Time to heal from childbirth
    • Ability to breastfeed
    • More time to care for newborns
    • Adherence to postpartum care visits
    • Receipt of postpartum depression screening

    Yet, in the United States, one quarter of mothers are back to work two weeks after childbirth 14. In light of the COVID-19 pandemic and lack of necessary support systems for new mothers, paid leave seems even more pressing. On December 20, 2019, the President signed the Federal Employee Paid Leave Act, which provides 2.1 million federal workers with up to 12 weeks paid leave following childbirth, adoption or fostering. This is an important first step to increase the population of workers with access to paid leave which would perhaps reduce maternal mortality rates. As U.S. researchers delve deeper into the causes of racial disparities in maternal mortality, they would be remiss not to investigate the relationship between uneven access to paid leave policies in minority populations and the disparities in maternal deaths.

    Note: For more information on work policies and disparities in maternal mental health, check out Dr. Dagher’s presentation at the Institute for Women’s Policy Research webinar.

    References

    1. WHO, UNICEF, UNFPA, World Bank Group and the United Nations Population Division. (2015). Trends in Maternal Mortality: 1990 to 2015. https://www.unfpa.org/publications/trends-maternal-mortality-1990-2015.
    2. Sieber, R.A., (2019). Rising Maternal Mortality: Key Concepts and Opportunities for Intervention. The Journal of Lancaster General Hospital. http://www.jlgh.org/Past-Issues/Volume-14-Issue-4/Sieber_Maternal-Mortality.aspx.
    3. Stewart, D.E., & Vigod, S.N. (2019). Postpartum Depression: Pathophysiology, Treatment, and Emerging Therapeutics. Annual Review of Medicine, 70: 183-196. https://doi.org/10.1146/annurev-med-041217-011106.
    4. Sun, G., Wang, F., & Cheng, Y. (Preprint with the Lancet, 2020). Perinatal Depression During the COVID-19 Epidemic in Wuhan, China. http://dx.doi.org/10.2139/ssrn.3576929.
    5. Cameron, E., Joyce, K., & Delaquis, C., et al. (2020). Maternal Psychological Distress & Mental Health Services Use During the COVID-19 Pandemic.
    6. Aitken, Z., Garrett, C.C., Hewitt, B., Keogh, L., Hocking, J.S., & Kavanagh, A.M. (2015). The Maternal Health Outcomes of Paid Maternity Leave: A Systematic Review. Social Science & Medicine, 130: 32-41. https://doi.org/10.1016/j.socscimed.2015.02.001.
    7. Dagher, R.K., McGovern, P.M., & Dowd, B.E. (2014). Maternity Leave Duration and Postpartum Mental and Physical Health: Implications for Leave Policies. Journal of Health Politics, Policy and Law, 39(2): 369–416. https://doi.org/10.1215/03616878-2416247.
    8. The International Labour Organization. (2014). Maternity and Paternity at Work: Law and Practice Across the World. https://www.ilo.org/global/publications/ilo-bookstore/order-online/books/WCMS_242615/lang–en/index.htm.
    9. National Partnership for Womean and Famililes. (2019). State Paid Family and Medical Leave Insurance Laws. https://www.nationalpartnership.org/our-work/resources/economic-justice/paid-leave/state-paid-family-leave-laws.pdf.
    10. Donovan, S.A. (2019). Paid Family Leave in the United States. Congressional Research Service Report. https://fas.org/sgp/crs/misc/R44835.pdf.
    11. National Partnership for Women and Families (2018). Black Women’s Maternal Health: A Multifaceted Approach to Addressing Persistent and Dire Health Disparities. https://www.nationalpartnership.org/our-work/resources/health-care/maternity/black-womens-maternal-health-issue-brief.pdf.
    12. Rossin‐Slater, M., Ruhm, C.J., & Waldfogel, J. (2013). The effects of California’s Paid Family Leave Program on Mothers’ Leave‐Taking and Subsequent Labor Market Outcomes. Journal of Policy Analysis and Management, 32(2): 224-45. https://doi.org/10.1002/pam.21676.
    13. Butikofer, A., Riise, J., & Skira, M. (2018). The Impact of Paid Maternity Leave on Maternal Health. http://dx.doi.org/10.2139/ssrn.3139823.
    14. Abt Associates Inc. (2012). Family and Medical leave in 2012: Technical report. https://www.dol.gov/sites/dolgov/files/OASP/legacy/files/FMLA-2012-Technical-Report.pdf.


  • The Way Forward for Sleep Health Disparities Research

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    By Nancy Jones, Ph.D., M.A.
    Scientific Program Officer, Community Health and Population Sciences
    National Institute on Minority Health and Health Disparities

    Populations that experience health disparities also experience sleep deficiencies, such as insufficient or long sleep duration, poor sleep quality, and irregular timing of sleep. These sleep experiences are associated with a wide range of suboptimal health outcomes, high risk health behaviors, and poorer overall functioning and wellbeing. In 2018, the National Institute on Minority Health and Health Disparities, along with our NIH colleagues at the National Heart, Lung, and Blood Institute, and the Office of Behavioral and Social Sciences Research convened a workshop with experts in sleep, circadian rhythms and health disparities to stimulate research that would address two questions, 1) what are the underlying health disparity causal pathways contributing to sleep health disparities (SHDs) and 2) could SHDs, at least in part, explain disparities in other health outcomes for these populations?

    The Workshop Report1 published in the Sleep journal is the distillation of hundreds of ideas into five areas and nine strategies.

    The first sleep disparities research strategy, Develop and Promote Integrative Research on SHDs, highlights the need for a concerted effort to bring together those professionals that understand what happens in the sociocultural context, outside the body, with those that know how sleep and circadian rhythm operates within the body and cells. Ultimate success depends on tackling head-on the challenge of merging two very different theoretical and methodological scientific worlds.

    The next strategy, Investigate the Causes and Consequences of SHDs, calls out key approaches to examine what causes health disparities, such as the role of racism and other forms of discrimination, recognizing the importance of examining multi-factorial causes, and not forgetting to examine protective factors, as well as risk factors. Further, because SHDs appear to share many of the same determinants and causal pathways observed for health outcomes with well-known disparities, this reinforces the need for exploring the association between SHDs and other health disparities.

    The third strategy, Develop Interventions to Address SHDs, exhorts the researcher to begin thinking about how interventions need to be designed to reach health disparity communities—it is never too early to start designing interventions to address SHDs. Many existing interventions for sleep are at the level of the individual; thus, beginning to design interventions that incorporate social and environmental factors early on is essential. Interestingly, one strategy that came up was to develop interventions that will promote general sleep health (not just intervening when someone already has a sleep deficiency). This really captures an important opportunity to address the public health burden of chronic sleep problems before it manifests as a disease. Even more importantly, this strategy of designing interventions to promote sleep health may provide a novel health promotion approach for populations that experience health disparities.

    The next strategy, Build the Research Infrastructure and Training Opportunities for SHDs, highlights ways to leverage current research efforts to address SHDS. For example, studies can be cross pollenated by including both sleep and health disparities measures to key epidemiological studies and incorporating representation of underrepresented populations in more sleep research studies.

    Lastly, Promote Integrative Training Opportunities, addresses the importance of developing a diverse workforce that can conduct transdisciplinary research on SHDs. Infrastructure and support for transdisciplinary research covering multiple areas, including clinical, public health, dissemination and implementation science training is needed.

    On behalf of the program officials responsible for the NIH sleep health disparities research portfolio, and the team of experts that informed on the nine strategies, we hope this report will help stimulate exciting interdisciplinary research to address sleep health disparities. Here at NIMHD, we believe research on sleep disparities will contribute to identifying common causal health disparity pathways and common sleep and circadian-related mechanisms that underline multiple well-known health disparities and thus help improve minority health and reduce health disparities more broadly.

    References

    1. Jackson, C.L., Walker, J.R., Brown, M.K., Das, R., & Jones, N.L. (2020) A Workshop Report on the Causes and Consequences of Sleep Health Disparities. Sleep. https://doi.org/10.1093/sleep/zsaa037.