Sustainable Steps

Don’t Agonize, Organize

the animosity flooding our newsfeed these days isn’t new. it’s just louder. more visible thanks to mass media, to social media, to dashboard cameras and yes, thanks to politicians giving credibility to prejudice.

in the wake of these issues, most of us can do better. i hear from people that they don’t know where to start and the truth is i’ve been there too. i’m committing to taking one step a day for the next 30 days to contribute to solutions that are sorely needed in our communities.

i plan to develop better habits in the process. i hope to provide value to others too, so i’m going to start at the very beginning. maybe these are just reminders and maybe they are new ideas for you. I will post updates to my social media channels and unpack the concepts here so you can dive deeper into the pieces that resonate. i’ll also share the resources i’ve found along the way. if this is already a regular practice for you, please offer me feedback and ideas for how you step up in sustainable ways on the regular.

diverse crowd at a rally with sign that reads "Don't Agonize, Organize"
image: Abigail Gray Swartz featuring quote by Florynce Kennedy

Disclaimers:

Not every idea is a sustainable step for every person: We each have different resources and limitations.

I want to iterate that the responsibility of addressing disparity lies with the privileged.

I can only speak directly from my own perspective. My words will be imperfect but I am committed to making a net positive impact. My vision is for us to learn together and acknowledge positive intent as we take this journey.

Final Days on Site

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a day in the life working alongside the CLI research team

I spent my last few days doing data entry (real glamorous, I know), getting all the physical materials in the office in order, and trying to meet with as many people as possible to get some decisions made.

But decisiveness never comes easy. I offered up a needs assessment and an analysis of five potential interventions that address prenatal and perinatal needs in the community. Now the leaders in the clinic and the research team need to discuss and decide: is it TBA supply we want to address? the lack of autonomy we see amongst mothers? the transport issue? There’s pros and cons to each, considering project feasibility, anticipated effectiveness, costs, political implications, etc…

transport issues are a commonly reported barrier to facility births (and thus, births with expert assistance). this ambulance is reserved for emergency transfers from CLI to other hospitals.
transport issues are a commonly reported barrier to facility births (and thus, births with expert assistance). this ambulance is reserved for emergency transfers from CLI to other hospitals.

When everything is so interconnected, it’s hard to imagine addressing one obstacle and not the others. But we have to start somewhere, and with no existing budget for a new intervention, we’ll have to narrow in on a single project, at least for now.

Waiting isn’t fun, but it’s important to me that we make sure everyone is on board with any active response we decide to take on. The clinic team has to make tough decisions all the time about how much activity beyond patient care can really take place before you’re putting people at risk. It’s possible that no new interventions come from the data, and even that would be better than doing a half-intervention because not everyone was committed.

I’m back at home now, back to communicating via email and What’s App, back on the nights and weekends grind, but I’m excited to see what’s next.

Happy to be reunited with Barry, Binja and (not pictured) Blue.
Happy to be reunited with Barry, Binja and (not pictured) Blue.

Sometimes I catch myself feeling a little too attached to the final outcome of the (potential) intervention, but realize I’m getting ahead of myself. We started with virtually no data on the maternal and neonatal outcomes in the catchment area. Even if we can get access to the Ministry of Health records, now that we’re a facility providing delivery services, we’d never have these audits on the deaths that took place in the community. The findings can feel kind of hollow when most of what you report aligns with assumptions of the staff who already work with these patients day in and day out. But having estimated frequencies, having records of actual cases, having interviews with typical residents in the catchment area (our staff aren’t exactly representative of the average CLI patient), it’s all valuable for expressing need in the community, asserting or questioning existing assumptions, and maybe supporting a grant application some time down the road.

Thanks for following along! My next update will share findings from the project evaluation.

Meetings, the Malawian Way

Maybe some day I can host a volunteer meeting in Malawi without overthinking every detail, but this was just not the day.

When we do events for my main gig at Ohio State we have a real start and end time: at Tuesday’s community volunteer meeting people arrived any time between 11:55 and 2:30.

I wrote a detailed “agenda” (okay a script, it was a play-by-play script) that I’m pretty sure no one read, and I’m positive it wasn’t followed, and I didn’t need to understand Chichewa to know it.

At home, when you invite a bunch of people to come to a meeting and they are sitting in silence, just staring… waiting for something happen for minutes on end, something has gone seriously wrong. But here people are used to that. I was the high strung Mzungu trying to move things along for a few (30) minutes. Eventually I realized I needed to let my team do their thing. That we’d get our surveys completed to the best degree that we could, that everyone would get the snacks and transport money they needed, that everything would be fine. Even if people spent their whole afternoon with us, it would be okay.

And really it was. Sixty six volunteers attended! Three more than came to our meeting last year, meaning despite HSA turnover engagement has persisted and we are still able to call on our community reps when we need them. It was so nice to recognize names and faces, to see so many in the shirts I distributed last year, and to hear them offer insights in another open discussion. The surveys seemed to have given them a safe space to provide different feedback than what they said out loud.

Even if the responses are critical, the most important part was that our community reps came and gave honest feedback.

I’m still rummaging through the data and trying to formulate some lessons learned. One clear indicator is the measure of volunteer training: we asked if our volunteers have been given the information they need to fully understand their role in the surveillance. Seven responded “Neutral/Don’t Know” and the remaining 50+ said they Agreed or Strongly Agreed. A good sign for our training program and the HSAs’ work!

So another one of those necessary and exciting and exhausting meeting days has come and gone, and I’m happy to know that this outreach program has been successful enough to catch the attention of hospital leadership. The head clinicians have engaged with the group and asked to work with them for other outreach initiatives outside of this surveillance effort.

The stark difference between what’s inside the walls of the CLI campus and what is outside can be daunting–it’s an oasis inside of a dust bowl. Connections with the community bring that progress outside of the compound and it feels good AF to be a part of it.

Old World Sexism

Last year I wrote about a bylaw requiring women and TBAs to pay a fine of a goat to the chief of their village each time they have a home birth. The other day I found out that when a young girl “falls pregnant*” her family also owes a fine to the chief as a penalty. I couldn’t help but ask “what about the boy or man’s family?” even though I knew the answer was that there is no accountability on the male’s part.

*So often the language alone says so much.

It’s bad enough when you know a culture facilitates victim blaming and double standards, but when the policies enforce them so blatantly, it gets to me. Don’t get me wrong—I’m aware of reproductive rights issues we have around the world including at home, but at least our policymakers have to try working a little more discreetly to write sexist legislation.

I also learned that medical students are taught just two categories for induced abortions: “inevitable” or “criminal.” The physicians had a dynamic conversation* about the appropriateness of putting that kind of language on a medical record. Their job is to treat people, not to get involved in legal disputes and criminal cases. The truth is abortions are still illegal here (pretty comprehensively), so technically calling it criminal is accurate. But the fact that stigmatizing language can even be found on your hospital chart demonstrates how pervasive the oppression of women really is.

*I was proud of the clinic leadership for even having the conversation—it was not easy or comfortable, as the Christian faith is a big part of this hospital. Ultimately, they were clear about wanting to do right by their patients.

Working on a research team connected to a clinic means it’s easy to see how these systemic issues touch individual lives.

The founder of CLI, Jeff, told me about a 12 year-old who was raped and impregnated by a local boy and ran away from her parents (no surprise given the environment I just described). She sought refuge with her uncle but was turned away, so was on her own until she came to deliver at CLI hospital. She is one of many cases to inspire the clinic’s new teen motherhood program. They’re working to offer nutritional and parenting support for the mother including a stipend for someone in her family to take time off of work so she can return to school.

It’s a needed service but it’s hard not to think ‘upstream’ about how we can prevent the pregnancies in the first place. Motivating cultural change is so complicated, resource- and time-intensive, so I’m happy to hear that the clinic staff is interested in using the community volunteers organized through my surveillance project as advocates for other initiatives driven by the clinic. These volunteers seem to really believe there is opportunity to improve their villages, and they are one thousand percent critical to driving sensitization efforts. You can’t be a mzungu running around insulting someone’s culture, but a respected champion who shares your vision (maybe an army of them) actually has a chance to incite change.

So, this is where the ‘less data, more doing’ pressure comes from. But evidence has shown time and time again that empowering girls and women promotes growth in all areas (econ/edu/health), arguably with more efficience than any other type of intervention. I hope CLI can learn from those cases and leverage data from Malawi and around the world to move the needle for girls and women right here.

New and Old, Same and Different

I usually pride myself on my adaptability, especially when traveling, but maybe now that I’m working on this project over so long it seems like it takes a little more energy to go with the flow. Of course reminding myself that it’s been an entire 13 months since my last visit makes things more comfortable. My life back in the states sure doesn’t look the same since last time I made this trip.

To organize what would otherwise be a random smattering of updates, here’s what’s inevitably changed, and what’s stayed the same:

CHANGES

Malawian Kwacha

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The currency here has taken a dive since my trip. I thought that meant good news—that what’s left of the money i left in USD would be worth even more now than it was before! But it turns out the funds were all exchanged at once. Ouch. So even though the money has been well managed I’ll be needing to leave some extra behind to complete the 18 months of surveillance we originally planned for.

Clinician Buy-In
One of my two main supporters in the clinic no longer works at MWC. Another doctor has jump started a new, awesome initiative providing support for the teenage mothers they see in the maternity ward (another change that i’m super excited to share in more detail later!).

I’m going to be testing the waters in the next weeks to see what kind of room there is left to take action in response to the data we see from the surveillance (cases include a couple of teenage mothers but not many).

Office Location
The old research office is the new and improved laboratory for the clinic. We’re jus around the corner in a  space that feels about the same—it might even be a bit bigger.

SAMESES

Attention on Home / TBA Births

One of the research assistants delivered an impressive proposal for an initiative to work with Traditional Birth Attendants in the area and retrain them as advocates for safe deliveries at a facility with skilled assistance. I was considering this as a potential intervention to explore, so I’m glad to see someone else was thinking in the same direction.

Again, though, I am wary of moving forward with a comprehensive reaction to the surveillance before we’ve really completed the data collection, looked at the results as a whole and evaluated our efforts. I guess I can’t be surprised that everyone is moving at twice my pace, since they’re here working all day every day. Sometimes being strategic just takes a bit more time, and it can be difficult to wait if you already see where you can have a very positive impact.

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meeting prep is better when you’re prepared enough to know they don’t have a color printer, so you’ve bought markers to make it work.

Life at the Guest House
I’m back to sleeping in the same room, enjoying the same food cooked by Freddie, playing with Afshan’s kitty and sitting by a fire almost nightly. It’s still cold like last time and I’m unprepared for it like last time.

Navigating Needs
There are so many good things to put time and money into. Good people trying to go to school, interventions designed to fill obvious needs in the community, existing efforts and interest expressed by the CLI or MWC leadership… I’m putting on my collaboration cap and trying to see how I can align my existing work with the initiatives MWC is already committed to, but I hope we aren’t doing too much shoe-horning just to make that work. Every project brings a dozen new needs to the surface and it’s hard when you know you can’t do it all.

Tomorrow I meet with clinic leadership to see just how that alignment might work. Wish me luck!

Zikomo.

Technical Difficulties

I have updates! But they are typed up on my computer which hasn’t had access to the Internet for about 27 hours now. 💀

Permissions on my laptop are so locked down I can’t even change the time zone let alone my wifi settings.

I sent a cry for help to Ohio State’s IT Service Desk but I have no idea whether they’ll be able to help me.

Please send your wifi healing feelings!

UPDATE: that was fast! About 3 hours after posting this I was back in action. The power of vibes-err-prayer-err-desperate endless rebooting.

Getting Settled

The good luck gods were not on my side during my packing experience (okay all totally my own fault for procrastinating on top of being that person who ‘would lose her head if it wasn’t screwed on’) but good news has been mixing in with the speed bumps since!

My mom sent me an email saying all Delta flights were grounded with a system outage the day I set off, it looks like I made it through just in time.

I also got an awesome seat in the isle with no neighbors!

Turnover hasn’t turned out to be quite as bad as I thought it would be to deal with. The HSAs in charge are all ‘yeah, we’ve got this…’ so maybe Lamulani’s departure wasn’t as disruptive as I worried. He was the contact person for the plurality if not the majority of the community volunteers. The research team seems to not have skipped a beat and I really enjoy working with those staffers.

As for the people who are still here, coming back has been so nice, like a little homecoming, has me all warm and fuzzy.

New, very awesome projects have popped up in response to the maternity ward’s opening, so I’m both excited to see how those are going and a teeny bit nervous that next steps in maternal/neonatal health intervention have already been decided…

Tionana!

Feedback: the Ultimate Frenemy

Imagine a working environment where your most critical project stakeholders are unpaid, undereducated and don’t speak your language. These are the challenges I love about public health and about working abroad.

We’re hosting another community volunteer meeting during my visit, and I’ve been playing around with different ideas on how to get the most valuable feedback from each of them.

Letting people speak up and having open dialogue during my last visit was insightful, and it lets people ‘piggy back’ off of one another’s thoughts, which is great. But I’m not confident enough that it can represent each volunteer’s experience. To do an evaluation I really need all of them to provide feedback.

So I’m trying to design a survey they can all take at once, which would be really simple if everyone was literate.

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Traditional Likert Scale

To make sure everyone can complete the survey successfully I want to make a ‘visual’ likert scale. The challenge here is how to illustrate the values on the scale without assigning other implied values, impacting how the volunteers respond to the questions.

pain-scale-chart
one example of a visual scale, esp valuable when you need to communicate with someone who speaks another language

I thought about using thumbs up and thumbs down icons–but then what goes in the middle? I spent more time studying ‘thumbs sideways’ graphics than I’d like to admit. Will the volunteers avoiding giving us a thumbs down if they think it’s not what we want to hear? Same goes for smileys vs frowns or red, yellow, green bubbles. I’m thinking the latter might be the best option.

I did some research and there are some other thoughtful ways to get this kind of information from people who can’t read a written survey, but they are time intensive.

In one study I found, the survey respondents were given ten beans, and split them into two areas based on the likelihood they thought they were HIV+. So someone who knew they had HIV would put all 10 beans in the designated ‘affirmative’ spot, zero beans (all in the other area) if they were 100% sure they did not, and any split in between to establish different levels of uncertainty.

One big constraint here is time. We know this is the best opportunity to get ahold of the most respondents, and we don’t have all day to sit down with them individually to get this kind of information.

The more I learn about public health projects and research, the more I start to understand where compromise is necessary and where to push the envelope. New needs arise while executing one project, and these ideas and opportunities sprout up constantly. One could design (and probably fund) an entirely separate project just for designing a graphical likert scale, and it could have a big impact if it were a good replacement for the written one. We’ve all seen those pain scales–a heavily adopted measurement and communication tool that someone saw the need for and made it happen.

I believe the positive psychology description of this project would be “opportunity rich.” Having the space to explore where our resources are invested, with so many opportunities available, is exciting and scary, but mostly the former.

Zikomo as always, for following along!

Picking Up Momentum

My return to Malawi is approaching quickly! I’ll set off on my 24-hour journey to the heart of Africa in less than two weeks.

IMG_0719With timeliness on my side, I’m starting to make more progress with the team. I’ve had more time over the summer to dive deep into the Ministry of Health’s maternal death surveillance guidelines, and had juuust a few thoughts and questions in response.

 

When I shared some of these considerations with the team at CLI, they scheduled a meeting and hosted representatives from the District Health Office for the first time since the maternity ward opened. They asked for what the published guidelines promised–communications from the top down, and coordination across facilities.

Another big win came out of this meeting: vouchers for visitors who can’t afford a hospital visit but are transferred from CLI to St Gabriel’s, the nearest full hospital which can perform more complex operations that we aren’t equipped to handle at the clinic.

St Gabriel's Missionary Hospital in Namitete
St Gabriel’s Missionary Hospital in Namitete

The sense from CLI was that patients weren’t coming to deliver at the clinic, for fear of being transferred to a hospital which they couldn’t afford. So this solution removes a significant barrier to entry and I’m excited to see how the word spreads and, hopefully, increases deliveries at the facility.

My second visit to the site will focus on two efforts:

  1. Evaluate the project we implemented about 18 months ago, with a final product being a publication that might provide insights for other clinics or organizations hoping to collect data on maternal and neonatal deaths in their catchment areas.
  2. Develop a needs assessment, based on the data collected during the surveillance, and input from stakeholders across the catchment area. This will be a proposal of sorts, for initiatives that might address the barriers we are finding to safe pregnancies, deliveries and postpartum care.

I’ll only be in Malawi for half the time I spent during my first visit, so the pressure is on to complete a lot of pre-work in order to make the most of my face-to-face time in August. I’ve reflected on ways I can improve my communications skills and be a more effective collaborator on site to make it all work. Send me prayers, luck, good vibes, whatever you have to send my way!

Zikomo,

Lucy

Malawian Mommy Wars

We continue to collect the data, the maternal and neonatal mortality audit committee at CLI is meeting to review cases, and patterns are emerging.

The project is organically evolving and the team is identifying potential interventions to solve the problems identified as recurring obstacles to safe pregnancies and deliveries.

photo: Child Legacy
photo: Child Legacy

The main pattern we’re identifying is delivery without skilled assistance. It’s kind of like the mommy wars of Malawi. Only instead of the clash of crunchy ‘all natural’ modern moms against more traditional American women who just go to the hospital and let the OB GYN be the expert, you have women who hardly even form their own opinions about their deliveries, since their husbands, aunts, and mother-in-laws have so much more to say about it.

Women who lose their neonates describe situations where going to a professional facility is to insult their family and the Traditional Birth Attendant who would have otherwise delivered the baby. The woman’s mother would ask why she needs to go to a hospital when “I delivered six of you at home alone and got along fine.”

We have to also recognize that this definition of ‘fine’ is highly acculturated. If stats like these appeared for one or another type of delivery method in the Western world, there would be no debate. The outcomes would speak for themselves. But in low income communities, losing a child is just a part of life. The child is mourned and the mother is grief stricken, but it is more of a common tragedy than it is a devastating event that catches a community’s attention.

What’s interesting is that these women do interact with the modernized health system. Most have health passports–record books of their medical histories they take to all health appointments. Most even have multiple prenatal exam appointments. It seems to be the delivery itself that is so deeply embedded in the culture as something that takes place at home or at the TBA’s chosen setting.

TBA Supply Reduction

The first potential intervention that comes to mind is to target the TBAs. What they’re doing is already against the local policy, however, so it’s likely that they are doing this work with some knowledge that their work carries risk or is frowned upon by officials including village headsmen.

Things get tricky as an international visitor trying to implement an intervention with such serious cultural implications. We cannot disregard cultural norms entirely for the sake of what we think is best. I imagine that one of the first steps to going the TBA route is to identify why they continue to do the work that they do. Is it about status? Money? Community? How can we repurpose their roles in the community without causing them to lose those important benefits of their current work?

TBA Demand Reduction

We could also try an intervention to make sure women in labor go to a facility instead of a TBA. The women are going to facilities (ours and others nearby) for prenatal exams, so it should be easy, right?

Things get complicated when the mothers aren’t free agents to make such decisions. We aren’t always able to know who makes the call on going to a facility or TBA, and we might not have the same access to that individual as we have to the mother.

 

These are the kinds of questions I’ll be exploring during my visit back to Malawi this August. It will be a speedy two week trip but I’m looking forward to revisiting the team and moving us through the next steps of the project.

 

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yes, Joana does always kill it in the wardrobe dept.

In other, semi-related news, my advisor won a grant from Ohio State to develop a new Center for Research, Learning and Innovation at CLI! Very exciting to see them get resources they need to build an even stronger research program on site.