Using the Alcoholics Anonymous model in Community Health Worker outreach approaches

One of the major problems in community health worker outreach programs are people who do not follow up (called “loss to follow up”) and tracking defaulters. Because I work with community health workers who deal with HIV pregnant women and exposed and HIV positive children, my examples will be derived from the things I’ve witnessed and learned specifically related to HIV, which often carries different weight than community health workers who deal with many other illnesses prevalent in communities.

In community health work around HIV positive pregnant mothers and children, a community health worker follows the pregnant woman or mother and child, checks up on them at home about once a month, counts their pills to make sure they have been adherent, accompanies them to check up appointments at the clinic, and provides a form of support and information. After around 6 months, you can generally tell who will be adherent and who won’t be.

A lot the time, the people who have been constantly taking their pills, going to regularly scheduled check ups at the clinics and are generally adherent to what they are supposed to do for the first 6 months of antiretroviral therapy (ART), will continue to do what they need to do to keep themselves healthy. So while a community health worker is a nice support, the patient is looking out for his/her own health outcomes and the health outcomes of their children.

The same cannot be said about people who are loss to follow up and defaulters, who usually stop showing up to clinic appointments, avoid their community health worker and have not been taking their pills. They are the people who really do need the community health workers, but many times, they opt out of the program because they do not want to be followed. There are many reasons for this, ranging from their fear that having a community health worker show up might be a red flag in the community and give away their HIV status, to that they don’t think they need to get their children treatment because they aren’t noticeably sick. So, how do you get people who don’t want to participate in a program to participate? It’s a difficult question, one riddled with human rights issues, such as freedom of choice, but also public health issues, such as trying to keep people healthy and stop the transmission to more people.  (Which is talked about in the new book on Smallpox and mandating vaccinations in the USA, called Pox).

As I was thinking about this, an interesting idea occurred to me. There is currently an organization called mothers2mothers that takes women who have gone through their program of prevention of mother to child transmission, consisting or workshops, accountability meetings, and support groups until they give birth and have (hopefully) and HIV negative baby, and trains them to be mentors for other mothers currently going through the program. They usually meet in groups at a health center or clinic.

Now, what if we took this idea and added a program similar to the Alcoholics Anonymous (AA) program to it. Not the 12-step part, but the sponsor part. In AA, they have regular meetings with veterans and new members (like mothers2mohters), but they also have an assigned one-on-one relationship with a “sponsor”. A new person to the program is paired up with a veteran who is there to be their sponsor, offering guidance and support, there for them to call when they feel they are going to fall off the wagon and there for them to be a friend and a mentor. Many people describe this relationship as meaningful and life changing friendship that goes far beyond the bounds of just the sponsor relationship. This is a person who knows what you are going through and can be a guide, but is also just there to be a good influence and a good friend.

What if we transposed this idea onto HIV positive defaulter monitoring approaches? It is a lot less intimidating to just have a woman from your community befriending you and supporting you than a community health worker coming around to check up on you (sort of like the difference between an AA sponsor and a social worker). For people who have a high likelihood of loss to follow up or a history of defaulting, this could be a good way to keep eyes and ears on them. Community health workers are already crazy overworked, so keeping good track on defaulters is really hard. They may only be able to go out to visit them once a month depending on their workload, so having someone chosen from that persons own community to have a one-to-one relationship with them could allow the extra support needed to make sure that the people most prone to defaulting do not default.

Of course there are obvious problems with this model, the first being that in AA, people choose to go when they are ready, and if they are not ready and are forced to go, many times it does not go well and they fall off the wagon because they are psychologically not in the place to help themselves. So, you must ask, won’t the same happen with these women who are given a “sponsor” before they are ready.

The problem is that if a person starts ART and then decides to stop, many times their body develops immunity to the first line drugs and if they finally do get to a point when they want to get treatment, many times they need to be put on second line medication which has more side effects, and is more complicated to take. So, if someone starts and we are worried about defaulting, it is essential that we do whatever we can to keep them on.

And of course there is the danger of the sponsors defaulting. People are not always reliable, particularly when they aren’t formally trained as community health workers and especially if they aren’t being compensated. So, what keeps them continuing to be a sponsor for the new mother? I’m not sure yet. Maybe an investment in the program because they went through it and their child came out HIV negative? Are there other incentives for them to do this other than out of the goodness of their hearts?

I would love to hear your thoughts on how a model like this could be applied, if at all, or if you have ideas for other models or know of work like this going on and what the results have been.

Interesting Articles of the Week: 9/16/11 edition

Every Friday I am going to try and post the most interesting articles that I read over the course of the week with a brief summary (following in the footsteps of WrongingRights who does WTF Fridays). I hope you enjoy!

1. A great article shared by Duncan Green on his blog From Poverty to Power on the good and bad technologies being used and developed for international development and aid work – Good and Bad Development Technologies

2. A hilarious read (also hilariously sad) by one of my favorite blogs, Find What Works, about the new energy drink that 50 Cent decided to launch after feeling compelled to do something after his trip to Africa. The drink is supposed to generate enough revenue to feed “1 billion children in Africa” (or 1/7th of the world population….) - 50 Cent is Feeding Africa

3. You’re got to see this, War Is Boring publishes a chart of the worlds largest employers, guess who is first? – Worlds Largest Employers

4. Interesting tid bit in the Lancet on PEP and using treatment of HIV as prevention – HIV treatment as prevention

5. This is a very interesting topic shared by Wronging Rights! There is a company that is building private cities in developing countries, sounds like a scaled up version of the Millennium Villages Project, I’m not sure how I feel about it – Private Cities Being Built in Africa

6. The East African asks, we keep talking about investing in and empowering youth, but how can we actually prioritize them in policy? – Put Young People In Charge of Tanzania, Then Stand Back

7. I didn’t know anything about this until I had a conversation with 2 doctors working at Baylor in Lilongwe, one who worked in Texas and the other in Florida. They were talking about doctors and their conversations with patients about guns in the home. It was then that I found out about this crazy law in Florida where doctors were barred from having the discussion about guns with their patients, well it looks like it’s going to be overturned – Doctor Gun Talk

8. People over 50 do have sex! But most of the time they don’t think to talk about using things like condoms with their partners, making the number of older people who are contracting HIV at an older age begin to go up – Aging and HIV

9. A great article by the Center for American Progress about the top 10 most striking findings on the latest data on poverty in the US, looks like we are 3rd world bound! – The Top 10 Most Striking Findings on the Latest Data on Poverty in the US

10. IRIN reports the progress being made n the Rwandan health system – even if there still is a long way to go – Rwanda: Maternal and Child Health on the Right Track

Rethinking Expansion

I had the wonderful honor of meeting Deogratias, the founder of Village Health Works, at a global health equity training that I attended a few months ago. During the training, one of the audience members asked, “so what are your plans for expansion?” Currently, Village Health Works operates in one singular town, the town of Kitugu, in Burundi. And Deo responded with something along the lines of (not verbatim) “I have no intention of expanding, there is still work to be done here.” At first I was really disturbed and upset by his response, how could he, who is so intelligent and capable, not want to try and help other people when he has the capacity to? Why wasn’t he spreading across Burundi or trying to become Minister of Health? As I’ve thought more about his response, I’ve come to realize it is the best response I’ve ever heard, and one more international NGOs should take to heart.

Over $2 trillion has been given in aid and when I look around, I can’t figure out exactly what has been done. As I’ve thought about it more and more, I think I am beginning to see one of the major pitfalls in the way that INGOs work, and that is the desire to expand and “diversify.”

Many times INGOs want to see if their models can be replicated elsewhere, or they’ve come across funders who want them to work in a different area, or they see a need in another place similar to the need they are trying to address, or maybe they just want to go elsewhere, and they go. We’ve done a lot of going in international aid, and not much has changed, I think now it’s time to try something new, let’s all just stay put.

I know it’s not sexy or romantic, you don’t get to run around the world, you don’t get to say to your donors “we operate in 36 countries,” but maybe you can actually make more of a difference if you only work in one place at a time.

Right now, the INGOs model is focused on providing services (i.e. health, education, microfinance). I think that this is part of the reason very little is actually being accomplished. Instead of providing services, I think we need to start focusing on helping individuals and communities, one village at a time, one region at a time, one country at a time.

I’m going to use examples of two different organizations, both of which had books written about them by Tracy Kidder (I’m sure you already know what I’m going to say) Partners in Health and Village Health Works.

To start, I think that Partners in Health is amazing, they do great work, they have a great mission and from everything I’ve seen they are honest and dedicated to the work of providing preferential treatment for the poor. They are one of my favorite organizations and I have donated to them many times over the years. That being said, they started in Haiti, with Paul Farmer, who had a vision to provide access to great medical care to poor people in the poorest country on Earth. A very noble cause, and one that he achieved in the area of Cange in Haiti. The work he did in that community and for those people is phenomenal, but why not then move next door, to the next community, and then the next, all in Haiti, and slowly improve the collective health of the entire region, and maybe then the entire country? Why pick up and move to Peru when there is still so much to do in Haiti? Following that they also picked up and went to Rwanda, and Malawi, and to the handful of other countries that PIH now operates in. But why not focus just on Haiti, and provide preferential health care for people in other places there? (They have expanded throughout Haiti too, to 11 more sites, but anyone who knows anything about Haiti, knows that it still has a LONG way to go). Imagine what they could have done in Haiti if they poured all the resources they had into Haiti alone and not the many other countries they are now operating in. Maybe now Haiti’s health system would actually be descent instead of leaving so much to be desired.

Now, in the immediate areas that they provide services too, I am sure the quality of life has improved, whether it is in Haiti, Peru or Rwanda, and some might argue that it doesn’t exactly matter if the places are all next door to one another or on different continents, at the end of the day, the collective health of the world is improved (if only very slightly). For that, I say, I’m not sure that that segmented approach is what is really going to make an ultimate difference because if your next door neighbor is still living in undesirable conditions, how far can you really climb out of your situation? It’s like the broken window effect, if all of your neighbor’s windows are broken, even if all of your windows are not, you are still living in a neighborhood full of broken windows. But if you fix yours and your next door neighbors and everyone fixes their windows, the likelihood of falling back into that is much slimmer.

Then there is Village Health Works. Deo has a totally different approach that I mentioned at the beginning, which is, focus on the people you are trying to help until you’ve done everything you can, don’t try to expand. I agree, but would add my own caveat, which is, expand when you see you’ve achieved your goals, but expand to the neighboring town, don’t jump across the world. Instead of expanding, VHW invited people who are interested in adopting their model to come and learn how they function so that if they want, they can replicate it elsewhere.

I believe that the jumping from one country to another is partially selfish and self-serving for INGOs. It’s because there are high up people in the organization who want to travel and work in different places and it’s also so the organization can say “we work in 42 different countries,” but if none of the countries are doing measurably better, really, what does that mean?

What ends up happening is that you have all these isolated aid projects in all these different places where a few communities might be getting help, but there is nothing cohesive, nothing uniting. Not only that, the organization doesn’t get a chance to specialize in that particular country, or make a significant wide spanning change, because they are all over the map.

Now, I know people will argue, “well how do you chose who you help, which country to go to?” and they will also argue “there will be people getting left out” or “at the end of the day the collective whole is getting better, it doesn’t all need to be in one place at one time.” There are already people and countries getting left out, so those arguments apply now too. As for the “collective whole,” I’m not sure they are getting better enough to back up that argument either.

Aid is a slow process; right now it’s too slow. But maybe if we stay in one place, make sure what we are doing is good, and then take it from village A to village B to village C in the same country, eventually country X will do better on the whole. And while that work is going on in country X, another NGO will be working just focused on country Y, and another in country Z, and maybe then we can actually get something substantial done. Aid is done one person at a time, one community at a time, one country at a time. I don’t think we are helping anyone by being all over the place.

I know that there are a lot of hard working local and grassroots non-profits that do amazing work in just one country, I am working for one right now. But the habit is, as soon as they begin to gain recognition and funds, their first instinct is to spread. But this article in no way diminishes the incredible work that is being done on the local level, this is more of a critique on the large scale multinational INGOs.

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