The EnRICH webinar series provides a national forum for researchers and practitioners to disseminate innovative solutions to contemporary challenges in applied and translational maternal and child health research and practice. Each event features one or more speakers who are experts in the field.
Insurance Coverage / Funding
Question: For funders: what is a realistic amount of time needed to form a research team, decide on the research focus, and conduct and write up the research? Many such projects have 1 or at most 2 years of funding. Is that realistic?
Answer: This is such an important point. Particularly for partnered- or community-engaged research, development of the research team and focus can take a very long time and these activities are typically not funded. Ideally, this planning phase would be funded.
Implementation / Collaboration
Question: Could you explain how you developed your steering committee?
Answer: To form our Steering Committee, we aimed to recruit members from seven stakeholder groups in California: community doulas, former doula clients, clinicians, payers, advocates, researchers, and public health professionals. Our project leadership, which included researchers and leaders of community-based doula organizations, brainstormed a list of potential members based on their knowledge of stakeholders in the maternal and infant health space in California. We sent recruitment emails to potential Steering Committee members. Recruitment emails included information about the project’s goals, the expected time commitment, and compensation. Leadership also invited recipients to suggest other potential members.
Question: How were interactions with community Doulas facilitated? Bringing in? Inclusion efforts? Zoom? What was the outreach for inclusion?
Our Steering Committee consisted of seven stakeholder groups (described above), including community doulas. Once we formed our Steering Committee, we met via Zoom on a monthly basis. (Although we planned two in-person meetings, we were unable to follow through with this plan due to COVID-19.) We spent our first several meetings developing a Shared Values and Principles document to guide our work. One of our agreed upon shared values was to prioritize and center the needs and experiences of BIPOC who have experienced pregnancy and/or childbirth and the community doulas who serve them. We also agreed to acknowledge each Steering Committee member’s wisdom, knowledge, and perspectives.
Question: Do you have tips to share with us to establish the research-community partnerships if we haven't done it before? Did the communities apply the research findings into practice? in what way? Any tips to share with us for that dissemination and translation piece? Thanks!
Answer: Relationship building is critical and, ideally, this happens well before any funded research project. Understanding the community organization’s goals, values, and priorities is also key and can help to align towards shared project goals. Ongoing sharing of information on preliminary findings or other things that are learned throughout the research process is important. It can help to share research findings in more accessible, approachable, and digestible ways.
1. Do you have examples of data publications or products that states have developed using their NSCH data?
- Examples of state-focused analyses and publications are available at www.childhealthdata.org.
2. Are there costs associated with accessing data via the Research Data Centers (RDCs)?
- Yes, but costs may vary. Please visit Federal Statistical Research Data Centers (census.gov) to learn more and find the RDC closest to you for more specific information.
3. How can I get involved in the study? I want to be able to help gather data.
- HRSA MCHB partners with the US Census Bureau to field the NSCH, as such it is not a process that individuals, groups, or organizations can support through data collection. The best way to get involved with the NSCH is to use the data. Please visit www.childhealthdata.org for easy access to a user-defined query system or download the microdata file here. For more information on how households are sampled please see our FAQ or Methodology Report.
4. Can you repeat what year the supplemental file for metropolitan Atlanta will be available?
- The metro Atlanta supplemental file will be available October 2022.
5. Is there data on the racial or ethnic background of the children and families participating?
- Yes, respondents provide information on the racial and ethnic background of up to four children in the household; one of these children is randomly selected to serve as the subject for the more detailed questionnaire. Please see our questionnaires here.
6. Is there a question that might determine the impact of the Public Health Emergency (PHE) that states have utilized for their Medicaid and children's health program?
- Unfortunately, no. Respondents to the NSCH are parents/caregivers and the data are designed to be representative of children. This precludes us from including questions that focus on topics such as state-level policies which cannot necessarily be accurately reported through this type of survey.
7. I think an early slide said the (web) survey (invite) goes to 70% of households. How are those households selected?
- This information is available under the discussion of Mixed Mode (High Paper) vs. Web- Push (High Web) in the Methodology Report.
8. CYSHCN is still a large and diverse population of children. Have you considered being even more targeted to children with medical complexity, a sub-population that is getting considerable attention currently?
- While children with medical complexity are an important population, the NSCH is designed to provide information on a wide variety of topics for the entire pediatric population. As a result, it is not always possible to include the breadth or depth of questions for special populations, like those with medical complexity. Having said that, there are a number of questions throughout the survey that can be used to assess the experiences and needs of this population. You might want to see the following paper: Identifying Children With Medical Complexity From the National Survey of Children’s Health Combined 2016–17 Data Set.
9. Is the Longitudinal Cohort going to be continued after the current planned cycle?
- Although dependent on the availability of funding, it is our intention to conduct an additional wave of data collection approximately three years after the 2023 (wave 2) data collection. The logistics and materials related to another wave of data collection are currently in the planning phase.
10. How important do you think to incorporate the Mental Health Screening Tool in the school? How can county health departments provide support when it comes to mental health and other lingering factors of COVID-19?
- We cannot provide a recommendation on the relative importance of including mental health screenings in the school setting. However, it may be possible for data users to assess the scope and nature of the burden of mental health conditions within their community using sub-state data which is available through the Census Bureau's Research Data Center (RDC). See question 2 for more information on RDC access.
11. Will the Longitudinal Cohort survey take any measures to ensure that responses are obtained families who were likely to be most affected in the areas of priority content (e.g, economic hardship) during the pandemic? I see that the NSCH Datasets include STATA data files. Is it considered a positive or negative to include STATA multivariate regression models on Grant Applications? Especially applications involving Maternal and Child Health, to look at trends to illustrate the relationship between variables.
- The base sample of the NSCH-LC is nationally and state-representative and it is a priority to ensure that the retained follow-up sample is similarly representative. However, there is overlap between the characteristics of households who were most affected by the health, social, and economic stressors related to the COVID-19 pandemic and those characteristics associated with low response rates. To support response rates among these and other hard-to-reach households, the Census Bureau is investing resources into locating households who have experienced residential moves prior to the fielding period and will conduct multiple attempts to reach households who have not responded. Additionally, pending the availability of funding, we are planning a fieldbased follow-up strategy to reach households whom we could not reach using traditional mail-based methods. Unfortunately, we are not able to provide guidance on what statistics to include in a grant application. Please contact the funding agency to inquire about any recommended strategies.
12. Has there been a study regarding postpartum depression and self-harm?
- The NSCH does not address these topics.
13. You stated that you will measure family resiliency factors. Do you include anything about social support or informal safety nets?
- Yes, the NSCH includes questions on the presence and sources of day-to-day emotional support in raising children. See our interactive codebook to search for more information.
14. You mentioned that a question about suicidality will be added for the young adults. Is there any additional data collected on mental health (anxiety or depression) and COVID from the 3 age groups?
- The NSCH-LC will include a caregiver-reported question about suicidality only for the young adult sample. In addition to that, multiple mental health measures are included in all instruments, including depression and anxiety diagnoses and the severity of these diagnoses at the baseline wave (2018 or 2019) and the second wave (2023), caregiverreported concerns about the child's or young adult's mental health during the pandemic, and a validated measure of internalizing and externalizing behavior problems in 2023 that is predictive of mental health problems.
15. I work with an organization that focuses on kids with neurological conditions (Child Neurology Foundation). I would be curious to know if the CYSHCN is connected to sociodemographic data to identify health disparities, and whether any information about experiences with prior authorization or other utilization management techniques is gathered as well as participation in clinical trials. These are some priority areas for CNF so would be awesome to know if there is any data collected that would support their work.
- The NSCH collects information on both CSHCN status and sociodemographic characteristics concurrently, and associations have been explored by researchers previously. One recent citation of interest may include: Reem M. Ghandour, Ashley H. Hirai, Mary Kay Kenney; Children and Youth With Special Health Care Needs: A Profile. Pediatrics June 2022; 149 (Supplement 7): e2021056150D. 10.1542/peds.2021-056150D The NSCH does not collect information on participation in clinical trials.
16. Is the minimum number of completed surveys per state the same for CYSHCN?
- We've been debating the pros and cons of different sampling strategies.
17. Are there incentives for participation?
- Yes, we use incentives: 90% of the sample received a small denomination bill as an incentive to complete the survey, 30% receiving a $2 bill and 60% a $5 bill. The other 10% of the sample do not receive an incentive and represented the control group for monitoring the effectiveness of the incentive treatments.
18. Can you explain again how the data is being collected. If it's household data, who in the household responds and who completes the follow-up survey you mentioned?
- Data are collected via web and paper. The NSCH utilizes a two-phase data collection approach:
- An initial household screener to assess the presence, basic demographic characteristics, and special health care needs status of any children in the home; and
- A substantive topical questionnaire to be completed by a parent or caregiver of the selected child.
19. Are the oversampling results publicly available or are they only available to the states that pay for it?
- Oversample data can be released with the Public Use File. However, the Census Bureau has fairly strict policies to protect respondents’ confidentiality, so not all data, e.g., more granular data on geography, would not be released without additional approvals.
20. Great to see HRTL included. Any attempt to align or harmonize with any states who are considering so-called Kindergarten Readiness measures (e.g., Oregon)?
- Yes, absolutely. We've always seen HRTL to be complementary to what states are doing individually. We can provide a high level, population level picture that is comparable to other states and the nation while state level efforts with the EDI other tools will provide a deeper picture.
21. Will be there be inclusion of questions for (1) Experiencing violence in environments, (2) Feeling the need to display violence in environments for self-protection?
- Not yet. We've been discussing this with CDC's Division of Injury Prevention, but there are significant challenges.
22. Are the new questions about diet and physical activity for young children are supposed to include what they eat/do at their childcare settings?
- We do not specify where the child's behaviors might take place. Parents/caregivers are asked whether the child engaged in any of a number of behaviors during the past 12 months.
23. Can you say when the 5-year combined dataset will be available on the Census website?
- If you need/want to do some quick work with the 5-year combined file, it is available at: www.childhealthdata.org; https://www.childhealthdata.org/browse/survey?s=2&y=41&r=1
24. Is the survey fielded in multiple languages?
- Yes, the survey is fielded in English and Spanish. Telephone support is available for other languages.
25. Can you highlight some more of the information gathered on CYSHCN?
- We collect lots of info on Children and Youth with Special Health Care Needs beyond the presence and general impact, including all 6 core quality outcomes which combine to create the overall NOM on System of Care.
26. I think the 5-year data is still restricted to NPM and NOM indicators on childhealthdata.org.
- This is true right now - it will be updated.
Funding and Reimbursement
- Can you please tell us how much the Birth Sisters are compensated? They are compensated an hourly rate plus a bonus, but we are moving toward a flat rate per home visit and flat rate per birth to mirror the new MassHealth (Medicaid) reimbursement proposal.
- How are Birth Sister doulas funded? Currently they are funded through philanthropy
- Can you speak to how payment/reimbursement for doula services work within your Birth Sisters program at Boston Medical? See #1
- I was/am a doula, but do not practice anymore mainly because it is nearly impossible to make a living. I would love to hear more about your recommendations for living wage payments for doulas. This is an important topic. There are two different payment models that have been used in our program over the years. The flat rate includes prenatal visits, birth and postpartum visits. The hourly rate is ideal for those who want benefits, as well. The key here is to have a payment that compensates not just the time with the client, but also travel time, administrative time and any ongoing training.
- Are the birth sisters employed by the hospital or a separate organization? They are employed by the hospital.
Training and Educational Requirements
- Can I sign up on your website for doula training? We don’t provide training for the public but there are many other trainings available both on-line and in-person. You can find a training that is right for you by asking other doulas in your community about training programs. Different programs focus on different client needs, so be sure to compare options.
- What is the training protocol for attending births? After the initial ‘classroom’ training, new Birth Sisters shadow experienced Birth Sisters with 2-3 clients before working on their own.
- Are there apprenticeship or shadowing opportunities? We do not offer apprenticeships for people who are not hired as Birth Sisters at our hospital.
- Do you have any research on the training of community-based doulas? How did the Birth Sisters Program train their doulas? I’m not aware of research on training outcomes for community- based doulas. Birth Sisters follow a basic curriculum that includes attendance at a childbirth education series, workshops on home visiting, community resource navigation, breastfeeding support, labor support, special circumstances (trauma, DV, substance use disorder for example), effective communication, professionalism, racism in healthcare and hospital-specific information. Ongoing training on relevant topics occurs throughout the year.
- Do you have requirements for the doulas related to education/certification? No, we only require new employees to attend the Birth Sister training and shadowing. Generally Birth Sisters who are hired are required to have some experience working in the community. Some already have doula training.
- In your research study, did the birth person get to choose their doula or were they assigned? No, they did not choose their doula but they could request a change in doula if the match was not right.
- Did any of the pregnant women have a preference of a doula being black or white? We try and match doulas to clients by their language and racial/ethnic background. The client can make specific requests, as well.
- What specific traits do you focus on selecting a doula for a patient? Language, racial/ethnic congruence, personality, specific needs and requests.
- You mentioned many of your 12 birth sisters were bilingual. How do you determine who is on call in this aspect? The doulas are matched to a client by language and culture. They are on-call to come in for their own client. If they are not available, a back-up Birth Sister is also assigned and ideally is also culturally/racially/linguistically congruent with the client.
- What has been the ideal doula to client ratio? How many clients is each doula seeing? Birth Sisters who do not have other work/family responsibilities generally have 4-5 clients due in a month. Others do more part-time doula work and may have 1-2 clients per month.
- Has your team/BMC considered expanding the Birthing Sisters model to other care facilities? Since our program is funded by hospital philanthropy it currently only serves our health care facility.
- Do you have any plan to extend this service to Asian immigrants or international students? We do offer this service to Asian immigrants. In our population, they are primarily from Vietnam and are served by our Vietnamese Birth Sisters. We do not generally have many international students who give birth at our hospital who would also meet the eligibility requirements for the program (low-income people with social stressors).
- Do you provide doula services in prison? We do not currently offer doulas to incarcerated pregnant people.
- Can you please say more about the scope of practice for doulas and how that might impact the associated outcomes for doula support? Community doulas provide the services we reviewed in the slides that I believe will be publicly available. We do not understand entirely the mechanism by which doula support improves outcomes. One hypothesis is that reduction in stress resulting from social support promotes a healthy physiologic response to pregnancy and birth. Another hypothesis is that the advocate at the bedside during labor influences the behavior and decision-making of the clinical team.
- Do you have any data on doula experience and patient outcomes? We do not have data on doula experience and the relationship to outcomes.
- Where can we find more information on your research findings? They are submitted for publication and, with luck, will be available in the medical sciences research databases soon.
- Do you find that there is often a misunderstanding of the role of a doula? If so, have you educated the Black community on the role and importance of doula support for those who don’t already know? Yes, the pregnant person’s midwife or doctor describes the services of the Birth Sister. We have not yet done a large-scale public education campaign due to lack of resources to serve all people who would want a Birth Sister.
- How do you navigate additional needs and resources to the pregnant and birthing people you support? Birth Sisters make referrals to other programs, community-based organizations and, when helpful, may accompany them on their visits, as well. Sometimes the Birth Sister may reach out to the clinical provider for additional support.
- Birthing Sisters Program is in BMC with a lot of resources. Would you please talk about the sustainability/opportunity of doula services in areas that may be lack for resources, such as rural areas? Rural areas definitely need doulas, too. Here is a link to the federal government’s Rural Health Information Hub publication on rural doulas: https://www.ruralhealthinfo.org/rural-monitor/doulas/
- What does the sustainability of your doula program look like? My understanding is that most Medicaid and private payors do not cover doula services, so when you can't bill for this how do you sustain this program? See ‘Funding and Reimbursement’ section, question 2.
- Dr. Mottl- Santiago's last comment regarding "exacerbating" disparities rather than mitigating them. How might that occur? If requirements for workforce entry and practice do not reflect the realities of community doula needs, the workforce will not represent communities most in need of doula support. This will perpetuate issues of implicit and explicit bias in maternal health care, as well as socio-economic immobility for birth workers of color.
- We are also working with community-based domestic violence programs to fund doulas to work with their clients. Are you hearing success with other CBOs (non-medical programs) hosting doula programs? That is wonderful! Yes, healthy start programs have some evaluation data on their doula programs, and much of the literature on doula services come from community-based organizations.
- I'm curious to hear more of the presenters' thoughts about integrating medical systems perspectives with more care- and community-based perspectives. For example the move towards precision home visiting and precision doula approaches. Do providers resonate with that kind of language (e.g., precision)? Integration of community health and medical system perspectives is critical for improving public health. There are many incentives for and barriers to this work. However, the tailoring of services/treatments to meet the unique individual needs of clients/patients is well understood in both realms. The concepts behind precision home-visiting is not unlike (and perhaps even borrowed from) precision-medicine.
- Is anyone considering how to offer health insurance coverage to independent/community doulas and midwives. I was essentially forced out of the field because I have no way to treat my own chronic conditions while being self-employed and with sky-high costs for premiums/deductibles. The cost of health care is a major concern in this country. I am not aware of any work specifically focused on providing health insurance coverage to self-employed doulas or midwives.
- How do you reconcile research on racial concordance of OB/GYN providers with the benefit of doulas? For example, some harms can be related to racial discordance with OB/GYNs vs access to a doula whose benefit might be related to the perception that they are 'outside' of the healthcare establishment? Shared racial/cultural/lived experience between doulas and their clients is valued by both clients and community doulas. In order for doulas to be welcomed into the health care setting, clinical staff must be educated about the role of the doula, as well as about implicit bias in health care.