Mental Health and Illness: At home and abroad

Nick Kristof really hit the nail on the head in his Sunday column in the New York Times “First Up, Mental Illness. Next Topic Is Up to You,” where he called out mental illness as one of the major issues systematically neglected to be given the seriousness and attention it deserves.

Mental illness is still the black sheep of the health world, both domestically and internationally. Like Kristof mentioned, the only time mental health comes up in American public discourse is in reaction to analyzing a human atrocity, usually a mass shooting or serial killer, only further stigmatizing it as a disease “crazy” people suffer from.

It will always be unclear to me as to why we give so much attention to diagnosing and treating physical ailments and forget that the brain is a physical part of the human body, and needs to be taken seriously and treated accordingly.

And just as it is neglected in domestic conversations on health, it is also a last priority in international health work. At the risk of sounding crass, what is the point of pouring all these resources into keeping people alive without also making sure they can go on to live full lives? This is particularly true when treating people living with and coping with life-long diseases like HIV.

This struggle was a theme I noticed over and over again while working with a group of youth living with HIV in Malawi. Yes, it was great that they were able to access antiretroviral treatment, certainly a huge improvement from only a few years ago when even that wasn’t widely available, but that is still not good enough. I explored some of the issues they face in my blog post from 2012, Psychological effects of being born with HIV for emerging adolescents, where it was clear that so many of the adolescents I worked with were suffering from depression and anxiety.

There are few organizations or institutions who measure the number of people suffering from mental illness in developing countries and suicide goes mostly undocumented. It is as though we think that depression and other mental illnesses are diseases only suffered by the privileged, who pay $250 a therapy session. But as far as I’m concerned, if we are going to care for people, we need to care for the whole package, not just pick and choose. The human mind is just as vulnerable as the human body, and both are equally as important to provide care for.

In response to the deficit of mental health providers in Malawi, I helped found an organization called Teen Support Line that focuses on providing psychosocial support for adolescents living with HIV. While we are focusing on a specific demographic, what we’ve found is indicative of what all people need to live mentally healthy lives – someone to talk to; someone who will listen; someone to help them process difficult situations; someone to stand with them; and sometimes medical treatments to target chemical imbalances in the brain. The human mind is just as vulnerable as the human body, and both are equally as important to provide care for, and should be integrated into all treatment plans, no matter where in the world you live.

Alphabet Soup: Are you saying what you mean?

Gender-based violence. Those words are powerful. Say those words to someone and they mean something, even if they have never heard the term before. Female genital mutilation. These words conjure up images of brutality, of violence, of pain, of discrimination and sexism. Even sexually transmitted disease, maybe something you’re more used to hearing in its abbreviated form of STD, is more powerful when spelled out.

If you work in global health or international development and maybe even if you don’t, you probably call gender-based violence “GBV” and female genital mutilation “FGM”.  You’ve probably written PMTCT, short for prevention of mother-to-child transmission (of HIV). And heard SAM (severe acute malnutrition); SRH (sexual reproductive health); FP (family planning); MVC (most vulnerable children); NTDs (neglected tropical diseases); NCDs (non-communicable diseases); OVC (orphans and vulnerable children); QALY (quality-adjusted life-years)…and I could go on.

There’s the obvious argument that using these acronyms and abbreviations alienate people who aren’t in the aid, development, human rights or health fields and don’t know the wonky lingo and it’s elitist and pretentious, and I would agree with that. But there’s something even more disturbing.

We dilute the meaning of these words and phrases by bunching them up into comfortable little packages of letters. We start to forget what they even stand for. This shorthand stands for words that articulate inequity, paint a picture of human rights violations, elucidate real issues that need to be described with real words, not – women who have experienced FGM as a form of GBV are also likely to get STDs like HIV and end up going through PMTCT, though many times their children suffer SAM and are MVCs. WHAT DOES THAT MEAN??? It means women are being abused and having their human rights violated because of their gender. It means we’ve figured out ways for people living with HIV to not transmit it to their children. It means children are dying from malnutrition because they live in poverty. These letters represent circumstances that describe the trials of being a human being in the face of injustice. This isn’t LOL and BRB and IDK.

So, while I might vaguely understand people’s desire to shorten things up, please, take the extra few letters, take the extra breath and say the words. They mean something. And isn’t it so much more powerful to call what it is they stand for by their names?

The Power of We: Collaboration as the vehicle for advancing global health equity

This blog post is in response to Blog Action Day, whose theme is The Power of We

Mobilizing a community in order to advance global health equity

In life, we tend to navigate our careers by ourselves. Yes, we network, sometimes a connection helps to get us a job, but for the most part, the work we do is, both positively and negatively, our own. The feedback we receive tends to be myopic, in that it is only reviewed by our supervisor or teammates, and is usually not scrutinized beyond the spectrum or scope of our co-workers. It’s unilateral feedback that many times is given with an agenda because the reviewer is looking for something in particular that they want us to be doing or conveying. While this in an obvious and necessary function when working in an institution,  it is becoming more and more apparent that without cross-organizational and multi-sectoral collaboration, the world of aid and development, particularly in global health, will just keep running around in circles and people will keep inventing the same dysfunctional wheel, over and over again. Real change will only come through collaborative efforts.

In the field of public health, where communication among organizations is essential to create a significant impact, I have found the Global Health Corps community to be uniquely situated to effect change on a global scale because of it’s emphasis on collaboration through its growing network of fellows and alumni across dozens of organizations throughout many countries.

The mission of Global Health Corps (GHC) is to mobilize a global community of emerging leaders to build the movement for health equity by placing talented young professionals in 1-year, paid fellowships, where they are given high impact positions to effect change within organizations. Within this fellowship, community building in an integral part of the experience, and fellows get to know each other as well as alumni, from the outset.

By prioritizing building close relationships within the community, we organically foster collaboration that breaks down silos and promotes idea sharing between organizations. Instead of living in an atmosphere of competition, where there is a disincentive for organizations doing similar work to collaborate because they feel like they are competing for funds and results, Global Health Corps aims to create a paradigm shift that alters the status quo and creates an environment that promotes discussion and sharing. Fellows naturally become invested in one anothers futures as well as the success of the movement. We want to help one another and we don’t see each other as competition, but instead as fellow champions of this movement.

This also diversifies the voices that are at the table –  instead of only having the opinions of your organization, when you call on the GHC community for ideas or feedback, you get input from people with experience in medicine, supply chain management, program management, nursing, finance, pharmaceuticals, communications, resource development, technology and mHealth, to name a few. When you have all of these different perspectives at the table together you have a much more representative and well-rounded perspectives coming from the different players in field of global health. None of us have all the answers by ourselves, but when we work together, support each other, and build on one anothers ideas, we are able to create much more fleshed out, effective and well thought out interventions. And we find, ultimately, that we never need to work alone.

While I was a fellow, working in Malawi for the Baylor International Pediatric AIDS Initiative as a health promotion fellow, one of my responsibilities was to create a community health worker training manual. I thought I had done a pretty solid and comprehensive first draft, but I had the opportunity to tap into the communal knowledge of the GHC network for input and, with their feedback, was able to create a more substantial program that incorporated ideas that I would have never thought of, and were not suggested by my co-workers at Baylor. This is not to say that we were not thoughtful, only that in a complex world where we have imperfect information, we will never know everything, and the more people who are able to give us feedback, the more we can incorporate that we would not have otherwise.

One day, the emerging leaders that went through the GHC fellowship will have emerged, and become the leaders of non-profits, government institutions, companies and advocacy movements, but they will all have something that connects them, GHC. Just like you get excited when you meet someone from your alma mater, this common denominator is a unifying factor, and regardless of at what point someone went through the fellowship, they know they have a friend in anyone who has been affiliated with GHC, not only as a fellow, but as an ally of the organization. This not only open doors and provides opportunity, is also cultivates the spirit of inclusivity.

At the end of the day, we’ve been programmed not to feel in competition with one another, and recognize that while we may come from a diverse set of backgrounds and take many different paths throughout our lives, we all have one thing in common, which is our dedication and belief in advancing global health equity.

Game Changing Women – Local Champions

This blog post is in response to Tom Murphy of A View From The Cave’s A Day Without Dignity 2.0 whose theme this year is “local champions.” In short, A Day Without Dignity was inspired by campaigns like TOMS One Day Without Shoes and the Invisible Children’s Cover The Night Campaign KONY2012 (don’t even get me started on that one). These campaigns tend to celebrate the “white savior” and instead, Tom is looking to use A Day Without Dignity to celebrate people who are helping themselves and their communities, and there are MANY!

This has long been a topic that excites me, especially women taking charge in their communities and doing incredible things. I believe that a significant part of the real change made in communities around the world is organic and comes from within, not without, something I struggle with constantly as someone working in aid abroad. (I will hopefully also write a blog to post onto the A View From the Cave forum where I will discuss that further, and cross-post onto this blog.)

A few years ago I put together a TV series, which I pitched to the Oprah Network, called “Game Changing Women.” The premise of the show was to highlight the incredible women around the world taking things into their own hands. While the show was not picked up (thanks Oprah!), I’d love to use this space to celebrate just a few of these incredible women and share their stories. Each of these women is a local champion and they are changing the world:

1. Amanda Espinoza realized that in Nicaragua, in order for women to compete in a man’s world, women needed to know how to do a man’s job. She started Mujeres Constructoras to teach poor Nicaraguan women construction skills. The women are taught carpentry, welding, plumbing and electrical work and can make everything from furniture to buildings. The program has taught hundreds of women who are now hired for well paying jobs and able to develop financial independence.

2. Shilpa Merchant worked to prevent the spread of HIV in the sex workers of Mumbai. India. She soon realized that nothing would change for the sex workers unless they had a monetary buffer, which would make them less vulnerable. Since traditional banks in India would not provide sex workers accounts because of their trade, Merchant started the Sangini Women’s Co-operative Bank. The bank provides savings accounts and loans and now has over 2,000 accounts, empowering women to change their lives.

3. Susan Burton is the founding Executive Director of A New Way of Life Re-Entry Project, which operates homes and programs in South Los Angeles, for women recently released from prison to enable them to stay sober, get jobs and obtain life skills. Burton herself overcame a personal history of decades of incarceration and struggled with re-entry. After her release, she earned enough money working as a home health aide to purchase a modest home in 1997, which she shared with her first clients. Today ANWOL operates three residences and has helped hundreds of women start new lives.

4. Selenge Tserendash was tired of the high unemployment and alcohol abuse in her country of Mongolia. Her solution to this problem was to start New Way Life Mongolian Center to help women economically and socially by teaching them quilting. Quilting was a new activity in Mongolia so Tser­endash recruited quilting teachers from the U.S. to come to Mongolia and teach the women. Quilting changed these women’s lives and gives them a steady income where they can work together to make quilts that are sold in their store and online.

5. When Betty Makoni was a secondary school teacher in Zimbabwe, she discovered that many of her students were victims of sexual abuse. In 1999, Makoni started the Girl Child Network to confront sexual abuse in the rural areas of Zimbabwe. The organization works closely with abused girls and offers them the support needed to keep the girls in school and safe.

6. When Naima Zitan learned that 60% of Moroccan women are illiterate, she decided to write plays in order to teach them about women’s issues and their rights. Zitan started Théâtre Aquarium an organization that performs these informative plays in rural areas, souks, markets, mosques, prisons, hospitals, factories, orphanages and theatres. She found this medium of communica­tion to be effective in teaching women about the laws of their country and how to use them to protect themselves.

7. The violence in the Democratic Republic of Congo has made it unsafe for women to commute even short distances. Adeline Nsimire recognized that these dangers prevent women from getting access to critical information and education. She started Radio Bubusa, a community radio station run by rural women in DRC, to ensure that rural women are empowered by access to information, training, and communication in a country that has seen a great deal of violence in the last years. By having a local radio station run by women, women are empowered by hearing important information that they can use to improve their lives.

8. During the bloody Liberian civil war, Leymah Gibowee, a trauma counselor, realized that if any changes were to be made in her society, they would have to be made by mothers. In 2002, she organized the Women of Liberia Mass Action for Peace, which grew to be a political force against the government and violence in the country. Gibowee led women in demonstrations and strikes, including a sex strike against husbands. The actions of the women finally led to the end of the civil war and led to the election of the first fe­male president of Liberia.

9. Lucky, Dickey and Nickey Chherti, three Nepalese sisters, taught themselves to be trekking guides in the Himalayas. Trekking is typically a man’s profession, but the sisters saw that empowering women to move into this field would improve their lives. They started Empowering Women of Nepal, which trains women to be trekking guides in the Himalayas.

10. After becoming a victim of sexual violence, Sunitha Krishnam decided to devote her life to working with the exploited women in India. She started Prajwala to fight the sex trade in India and assist trafficked women and girls. She is responsible for recuing more than 3,000 girls from sex traffickers. Prajwala has more than 17 centers and provides sex trafficking victims shelter and employment programs in carpentry, welding, printing, masonry and housekeeping so that they can start new lives.

11. The Women’s Media Centre was founded by 5 Cambodian women, Yim Davy, Ruth Rasy, Chea Sundaneth, SomKhemra, and Tive Sarayeth to en­courage Cambodian women to work in various forms of media at both the national and grassroots levels. It creates public awareness on women’s is­sues and trains women to be effective contributors in their respective media vocations. It also conducts activities to coordinate media networks through workshop, seminars, and the production of video and radio programs, as well as providing support for women journalists.

12. When Marina Pisklakova discovered that there were no organizations in Russia that helped victims of domestic violence, she founded Center ANNA, the nation’s first domestic violence hotline and brought about a movement against sexual violence in Russia. She began counseling women over the phone and in person. In spite of death threats, Center ANNA grew and Ma­rina helped women create hotlines across Russia. The organization runs pre­vention programs and prevention campaigns, as well as provides women with psychological counseling and legal assistance. The Center has helped more than 100,000 women escape violent relationships.

13. Kakenya Ntaija did not want to follow the tradition path for Maasai women in Kenya; she wanted to get an education. She convinced her town that she would use her education to help improve their lives. With the financial support of her town, as well as scholarships, she went to America to study. With the dream of helping a new generation of leaders in her community, she returned to her village and set up a boarding school for underprivileged Maasai girls, which focuses on leadership and community development.

14. Suraya Pakzad grew up under the oppressive Taliban regime in Afghanistan that denied girls education and treated them as second-class citizens. As a result, Pakzad started Voice of Women (VoW), a covert school in her Kabul apartment for young Afghan girls. In 2001, when the Taliban rule ended, VoW shifted its focus to fighting for the protection of women’s rights in Afghanistan. VoW provides refuge to at risk women and girls, and provides education and job skills training. VoW also works with imprisoned women in Afghanistan, often in jail due to abusive marriages.

15. At 19, Shahla Akbari, a young Afghan woman, started her own business, defying the role that most women are expected to play in Afghan society. Akbari was tired of buying boring, poor quality shoes imported from China, and began designing and selling fashionable, durable shoes for the women in her community. She decided to start her own business making shoes, one of the few accessories that Muslim women can use to express their personal style from beneath their burkas.

16. In 1997, Oung Chantol was tired of the violence being perpetrated against women in Cambodia and was horrified to find that there were minimal services avail­able to care for the victims. She started the Cambodia Women’s Crisis Cen­ter (CWCC) to provide shelter, counseling, medical assistance, literacy, life skills and vocational training to women who have been trafficked and abused. Since it opened, the CWCC has helped over 55,600 female victims of violence, rape and trafficking take control of their lives.

17. Rita Conceicao’s childhood in a Brazilian shantytown inspired her lifelong quest to help the girls of her community have a better life. Together with Margaret Wilson, she founded Bahia Street Center to provide impoverished girls in Bahia with academic courses to supplement their insufficient public education. Girls receive instruction in all basic subjects as well as in health and reproduction, art, and leadership skills. For many girls, the Bahia Street Center represents the only place where they can eat a hot meal, take a show­er, and receive positive encouragement from adult role models.

18. Angela Gomes succeeded in getting an education despite the stigma of edu­cating women in her community in Bangladesh. In 1981, she started Banch­ete Shekha to improve the quality life for the poor women and children in Bangladesh. Banchte Shekha’s program uses awareness techniques to em­power the girls and women with skills to survive and to access their legal rights. Today the organization offers programs to women in more than 430 Bangladesh villages.

19. Pabla Milian and many other young women known as the Mayan Auxiliary Nurse-Midwives are working to reduce maternal mortality in their commu­nities in Guatemala. These exceptional leaders are involved in a program developed to place skilled birth attendants in remote Mayan communities, where a lack of acceptance of modern obstetric techniques continues to threaten women’s lives.

 

 

Pyschological effects of being born with HIV for emerging adolescents

Anti-retroviral medicine (ARVs) to treat HIV only became available in most parts of Africa in the late 90s and early 2000s. Before that time, most children born with HIV did not survive past 2 years old. We are now beginning to reach a time when the first group of children born with HIV is surviving until adolescence, and unlike their parents and other people who were infected horizontally, this group of HIV patients has a new set of special needs.

These needs include psychosocial support that focuses on the implications of having HIV from birth and what a lifetime of having HIV looks like psychologically. These issues include living in constant fear of being found out by peers, resentment and anger towards their parents, wondering if they will be able to live a normal life and have a family, treatment fatigue, as well as feeling powerless, hopeless, depressed, and in extreme cases, suicidal.

Being a teenager is hard no matter where you are in the world. Imagine, on top of the hormones, the awkwardness of adolescence, the peer pressure, to also have to be dealing with the fact that you have HIV?

During my time in Malawi, I have already heard of a number of teenagers who have seriously contemplated suicide to the point where they had a plan, a date, and were ready to carry it out. Luckily, they had the resources available to them to reach out to someone, usually a doctor or social worker, who was able to provide them support. But for all of the stories of teens that did get that support, imagine all of the other teens are out there who do not have access to doctors or social workers that they can talk to.

The way that HIV education is taught in schools and by NGOs puts a lot of emphasis on the fact that it is a sexually transmitted infection. While most lessons will gloss over other forms of transmission, they focus most on the sexual transmission because it tends to be the most prevalent way it is transmitted in Africa. While many infections do happen sexually, this can be socially problematic for teenagers who were born with the virus because if or when their peers discover their status, the automatic assumption is that these adolescents got HIV because they are promiscuous, not that they were born with it. These assumptions cause these teens to be alienated by their peers and ridiculed, scorned, made fun of, and harassed mentally, emotionally and sometimes even physically. So, many teens live in constant fear that their friends will find out their status, doing things like hiding in bathroom stalls to take their ARVs.

When we reach adolescence we begin to want to explore our sexuality and relationships. Many times with HIV positive teens, this means that the couples will be discordant, meaning that one person has HIV and the other does not. When you like someone or you start dating them, you very rarely tell them all of your deepest darkest secrets up front, sometimes you never share them at all. So imagine being a teenager and someone is interested in you and it’s your first relationship and it’s exciting, the last thing you are going to want to do is share with that person that you have HIV. Not only is there the fear that they will leave you, but also that they might tell other people.

The first wave of the vertically infected group is now getting to the age where they might be thinking about having children not too far down the line. Obviously, getting pregnant requires not using contraceptives, which in a discordant couple means the chance of transmission during intercourse. While the recent study, HPTN 052 funded by NIH, was released showing that proper adherence to ARVs actually reduces the sexual transmission of HIV to less than a few percent, this is still a legitimate fear, for both the HIV positive person who does not want to infect their partner, and the person who is potentially putting themselves at risk of getting HIV. There is also the concern of passing it on to your child, which is probably magnified in people who were born with HIV, even if they follow the effective PPTCT (prevention of parent-to-child transmission) measures.

All of these issues are emotionally and psychologically taxing, especially on an adolescent who is only beginning to learn how to deal with complex emotions. These feelings of insecurity, confusion, isolation and fear can lead to depression, anxiety, and suicidal thoughts. According to statistics released by Professor Lourens Schlebusch of the Department of Behavioural Medicine at the Nelson R. Mandela School of Medicine, University of KwaZulu-Natal, “suicide in patients with life-threatening diseases is significant. HIV/AIDS patients have a 36 times higher suicide risk as a group than the risk found in the normal population.” Psychological support is not something easily obtained in most countries in sub-Saharan Africa, and especially not in the rural areas. In addition, there are even fewer people trained specifically to deal with adolescents and even less with adolescents who have HIV. So, how do we support these teens? This will be an ongoing discussion.

Engaging Men in Women’s Empowerment

In light of everything that is going on in the United States having to do with the sudden uproar on coverage of contraceptives and ultrasounds before abortion nonsense, I thought that my first post back should be about women.

In America we live under the fallacy that women are equal. In Africa, it is still blatantly obvious that they are not.

There are many empowerment programs run by different women’s organizations to try and remedy this situation, however, until we start focusing on the protection of women and girls all over the world, nothing will change. Protection is different than empowerment. Empowerment is making people believe that they have power and try to give them the confidence and tools to exercise that power. Protection is making sure that they are getting what they need to live a positive and healthy life – physically, emotionally, medically, financially, opportunity-wise, etc.

The biggest oversight with the women’s empowerment movement is that it alienates the men. These women have been armed with a false sense of power in many of these empowerment programs, which the men in their communities know nothing about and do not understand, and if anything view this as a threat. If you only shift the women’s perspective and not the men’s what you will get is a culture clash, and since ultimately, men still are in control, they will react with hostility to women’s new sense of confidence and just beat the women back down.

Men need to be a part of this process. In a world that is still run by men, bolstering women’s rights is not just about women’s empowerment, it’s also about getting male buy-in and male advocates. In order to truly be effective we need the people in power – men – to subscribe to this pedagogy. This requires changing culture, which, because of academia’s constant stress on “cultural relativism”, a lot of people feel uncomfortable doing. I have seen a lot of people write off the unacceptable inequalities between men and women as just “part of the culture.” But we need to remember what culture is; it is only a manifestation of power dynamics in a community, which is created (both consciously and unconsciously) by the people in power so that they can continue to stay in power. For example, small, covert things like the expectation for women to bow in front of older men in Uganda are subliminal reminders for them that they are inferior, and it is reinforced every time they bow.

Unfortunately, but realistically, protection of women starts with men. It starts with changing men’s perspectives about women and what their value and role is in society in addition to empowering women. This will come in the form of both policy and systemic changes as well as changing integral and deep rooted parts of culture, which take time and are usually uncomfortable and met with hostility. But, it is only when this paradigm shift occurs that women will truly be equal members in society.

Organizations working in women’s empowerment need to be engaging more with men, with religious leaders, with village chiefs and headmen, in order to not only make sure that these ideas are bought into but also to make sure women are not put in danger by a backlash against their new-found empowerment.

With that said, do you really think that these changes can come from an organization doing “behavior change” programs, or is it something that needs to be organic and come from within in the culture itself? And if it is the latter, what can we, on the outside, do?

Why isn’t anyone talking about burns?

With World Pneumonia Day having just passed, the topic of clean cookstoves resurfaced. The conversation about clean cookstoves revolves around their hazardous and life threatening affect on women and children, producing indoor air pollution. But they create another hazardous and life threatening situation for women and children, which is much less talked about, burns.

Most of the deaths and deformities caused by burns in low and middle-income countries are suffered by women and children and are related to the nature of domestic appliances used for cooking and heating their homes, namely, their cookstoves. The typical traditional stove is a 3 stone cooking fire, where 3 stones of similar size are used to prop up a pot and a fire is made underneath. Most cooking is done inside the home, in cramped, enclosed environments, leaving women and children vulnerable to the open flames. Women tend to wear long, traditional skirts and can easily have their clothing catch on fire if they get too close to the flames. It also makes it easy for the children to inadvertently fall into or step into the open fire. In addition, young children can easily get hold of the pot cooking on top of the stove and topple it over onto them, scalding them.

Ninety-five percent of burns occur in low and middle-income countries and fire related deaths rank among the 15 leading causes of death among 5-29 year olds, according to the World Health Organization. They are the 4th leading cause of trauma worldwide, following traffic accidents, falls and interpersonal violence. Burns also cause lifelong disabilities and deformities which not only can lead to stigma and rejection in a community, but also the inability to perform day to day tasks in order to survive.

Yet, in the discussion of introducing new cookstove technology, burns are rarely, if ever mentioned. If you look through the Global Alliance for Clean Cookstoves’ website, or look through transcripts of talks given by Hillary Clinton or Julia Roberts, who are both clean cookstove advocates, they do not once mention that introducing new cooking technology as a way to reduce burn injuries and deaths, the only thing that is talked about it reducing indoor air pollution.

There is quite a bit on support and advocacy for burn victims in developed countries (who usually have sustained these burns in ways other than cooking) but if you try to find out more about the attention burns is getting internationally, you will find a few rudimentary websites with little information on them, such as the International Society for Burn Injuries or the African Burn Society. So where is the burn victim champion in all of this talk about clean cookstoves?

Maybe we should change the campaign to providing SAFE cookstoves rather than clean cookstoves, and start talking about the many hazards that currently used cookstoves are causing.

Talking about “aid failure”

This blog entry is in response to the wonderful Aid Bog Forum that Tales From the Hood has organized. The prompt is about discussing “aid failure.”

I think that by framing a conversation about “aid failure” we are missing a vital point, which is that there is no such thing as failure when you are trying something new.

To me, when we talk about true failure, I think that it means repeating a mistake that you have already made and should have learned from and adjusted, or doing something completely inappropriate or negligent – like not doing a needs assessment and building a school somewhere where a clinic is much more needed and a school would not even be used.

The way we in this forum seem to be talking about “aid failure,” is trying out a project that you think will work, based on a good needs assessment, surveying the community and getting buy-in and it still not working the way you thought it would. Can you really call that failure?

We need to make sure people understand that there is a difference between failure and negligence – many times people confuse the two and think that if it’s failed, then someone was doing something wrong or negligent, but that is not the case in most situations. I think we need to change the language we are using, let’s call it “lessons learned,” let’s call it “an experiment,” let’s call it  “trial and error,” but to say that we are failing, doesn’t make any sense when we don’t know the right answers to begin with.

As Shotgun Shack talks about, the world is complex, solutions are complex, they are not straight forward, and many times the things that seem to be right end up being wrong. Unfortunately, we also live in a world where we are taught through our education system that there is only one right answer. We are trained to take standardized tests, where there are only 5 possible answers, A-E, and that only one is correct, and that if you don’t get the correct answer, you have failed that question. But that isn’t true in the real world; there are no right answers, only better and worse solutions.

In science, this notion of “failure” is accepted. Scientists try out experiments, and when they don’t work, they still publish the things that didn’t work, so that other scientists know not to try the same experiment. However, these publications that explain the “failures” help other scientists working on the same issue to figure out ways that it might work, based on the things that didn’t. Look at the work being done on the HIV vaccine, or malaria vaccine. How many times have scientists trying to develop these failed? Many! We still don’t have either one. But because they share information on the failures, we are getting closer to these vaccines being a reality.

Obviously, unlike with science, you cannot repeat an experiment in aid work and always expect to get the same result – the way we always hope when we put out our “models” and “best practices.” But having a detailed idea of what went right and what went wrong – in a totally objective way – will help people to think things through if they are trying to do a similar project and realize that through your “failures” maybe there are things they haven’t thought about that they need to consider.

I think that what needs to happen is that organizations need to start writing reports that are totally honest, comprehensive and candid. These are reports that lay out the facts of the project in a scientific way. I don’t think it is a problem to contrast successes with failures – as Bottom Up Thinking and A View From The Cave mention – as long as both sides are comprehensive. If we can explain what worked and why, and what didn’t work and why not, everyone will be the better for it.

Unfortunately, donor culture expects us to have the right answers, but that is partly our fault. The way that we report is usually flowery and positive, instead of honest and candid. Reports are very rarely a true depiction of what is going on and they have gotten used to hearing our wild success stories. This is especially a problem when we realize that an intervention that we trying is not working, but continue to do it because we don’t want to look bad to the donors – now that is failing because we realize we can fix it, but we don’t.

There is a problem with restricted money and “failure” – which is that sometimes the money you get in that is restricted to a certain project is no longer relevant, but you have this extra cash, and most organizations would rather figure out restricted ways to spend it then to go to the donor and return it, so they create these random projects to spend this extra money and the projects don’t really do anything.

One part of the solution is cultivating a culture that is okay with not knowing the answers right away, that understands that mistakes aren’t bad and that just because you made a mistake doesn’t mean you failed, and that can acknowledge that something didn’t work in order to create a dialog about how to make it better. This needs to be done on an individual level, an institutional level and a cultural level. Obviously this is incredibly difficult, and takes time, but through outlets like the blog Admitting Failure, or the FailFare, we are beginning to shift culture to be more open and accepting of “failure” and discussing “failure”, or rather, interventions that did not work.

Another part of the solution on the organizational side is to just give the restricted money that you can’t use effectively back, or ask to change the restrictions on it. This is incredibly difficult for organizations to do, because they do love getting money, and for good reason, it is definitely hard to come by these days. However, if you have a pot of money for a project that isn’t going to work, the organization needs to step up and say to the donor, “we just cannot use the money you gave us for this, it isn’t going to work.” Like Marc F. Bellemare suggested, there will be donors who are going to love that and appreciate it, and willing to change the restrictions and even want to give you more, and there will be donors who are turned off by it. But hopefully eventually we can get to a point where we have trained people to be okay with that, or even better, give more unrestricted funds.

If there is a way to get donors to put aside a percentage for innovative and experimental work (I mean, it all is, but some is more extreme than others) – basically funds that are earmarked for “failure,” that maybe that is a good start.

I definitely agree with Waylaid Dialectic – we need to get the beneficiaries to be part of the reporting process to really begin to address what worked and what didn’t. At the end of the day, it doesn’t matter if we think something succeeded if they think it isn’t helping. But, with that being said, in many places people will not be open and honest with you about failure because they want you to be there and they want you to stay and think that telling you what’s wrong will drive you away. Also, many cultures and societies aren’t as open with direct criticism and even talking about talking about failure; it isn’t even something fathomable to talk about. We need to figure out how to encourage more openness between the beneficiaries and the organizations trying to implement a project.

Like Soichiro Honda said, “success in 99% failure” or Benjamin Disraeli said “All my successes have been built on my failures.” You are inevitably going to do things wrong, get things wrong, and that is good as long as you have learned from them and do not repeat them. It is productive to fail because a lot of the time that is when you figure out how to succeed.

Community Health Worker Training – Any suggestions?

One of my responsibilities for my job is creating an updated and improved community health worker training manual. Below is the table of contents for the manual with all of the different topics and subtopics that we are going to cover. I was hoping that people might look over it and give feedback about what I could add or just any feedback in general on CHW training.

This is not the instructor training manual, so it does not include the activities, just the content to be covered. I would really love and appreciate any feedback and ideas on how to improve and expand. (In the introduction unit, Baylor and Tingathe are the names of the organization that the CHWs will be working for.)

UNIT 1: INTRODUCTION

  • Introduction to Training
    • Introductions
      • Getting to know each other
      • Ground Rules
      • Logistics of Training
      • Goals of training
      • Overview of what you are going to learn
      • Schedule
      • Administrative Information
    • Introduction to Baylor
    • Introduction to Tingathe
      • Goal and missions of Tingathe
      • History of Tingathe
      • Tingathe Program Components
      • Tingathe Strategic Objectives
      • Tingathe Patient Philosophy
      • Prior success and setbacks of Tingathe programs
      • Relationship between CHV and Site Supervisor
      • Tingathe at You the CHV
      • What does it mean to be a CHV?

UNIT 2: BASIC OVERVIEW OF HIV

  • Introduction to HIV in Malawi
  • Myths about HIV- brainstorming session
  • Basic overview of HIV 
    • What is HIV/AIDS?
    • How you get HIV
    • How you transmit HIV
    • How you prevent HIV
      • Condoms
      • Introduction to Prevention of Parent-to-Child Transmission
        • Overview of Prevention of Parent-to-Child Transmission (PMTCT)
        • Barriers to PMTCT – (include Loss to follow up – see slide from CSTP presentation)
    • Recognizing signs of HIV in children and adults
      • The difference between having HIV as a child and as an adult
  • Diagnosis
    • HTC
    • Dry Blood Sample (DBS)
    • Rapid Test
    • Importance of being tested early

UNIT 3: HIV TREATMENT

  • HIV Treatment
    • What is ART?
    • Who is eligible?
    • WHO staging
    • CD4 criteria
    • pregnant and lactating women
    • children under 2 years of age
    • Prior to starting ART
      •  confirmatory testing
      • Pre-ART counseling
      • importance of 2 caregivers
    • ART regiments in Malawi
      • Commonly used first line regimens for 15 years and older
      • Commonly used first line regiments for 15 years and younger
      • PMTCT regimens
      • Side effects for first line regimens
      • Alternative first line regimens
      • Second line regimens
    • Adherence
      • Definition of Adherence, Loss To Follow Up and Defaulter
      • Overview of good adherence and bad adherence
        • Role of the caregiver in adherence
      • Strategies on maximizing adherence

UNIT 4: COMMON ILLNESSES AFFECTING THOSE WITH HIV

  • STIs
    • What is an STI?
    • STI symptoms and complications
    • STI prevention
    • How to talk with patients about STIs
  • TB
    • What is TB?
    • TB and HIV
    • How TB is transmitted
    • TB symptoms with and without HIV
    • TB screening and treatment
    • What your patient should do if they have TB
    • TB prevention
    • Diagnosing TB
  • Monitoring Nutritional Status
    • How to do a nutritional assessment
      • Measuring height and weight
      • Measuring MUAC and oedema
    • What is malnutrition?
      • Rates of malnutrition
      • Types of malnutrition
    • Using the Wt/Ht% Table
    • Determining the nutritional status of your patient
    • Pregnancy and malnutrition
    • Treating malnutrition
    • Causes of malnutrition
    • Preventing malnutrition

UNIT 5: LIVING HEALTHY

  • Infant Feeding Counseling
    • Exclusive breastfeeding
    • Complimentary feeding
  • Overall preventative service for HIV infected patients
    • CPT
    • IPT
    • ITNs
    • Basic Hygiene
    • Nutrition
  • Family Planning
    • How family planning works
    • Why family planning is important
    • Talking about family planning with your patient
    • Family planning and HIV
    • Common forms of contraceptives
      • Male and female condoms
      • Emergency contraceptives
      • Injectable hormones/ Depo-Provera
      • Oral Contraceptives
        • Combination Pills
        • Progestin only pills
      • IUD or “Loop”
      • Norplant
      • Sterilization
      • Lactation amenorrhea method (LAM)

UNIT 6: CHALLENGES IN HIV CARE

  • Stigma and Discrimination
    • What is stigma?
    • What is discrimination?
    • How does stigma lead to discrimination?
    • How does stigma and discrimination relate to HIV?
    • How are people with HIV stigmatized?
    • How are stigmatized people with HIV discriminated against?
    • What are the causes of stigma and discrimination related to HIV?
    • How does stigma and discrimination affect people with HIV and their families?
    • How does stigma and discrimination against people with HIV contribute to the spread of the virus?
    • Reducing stigma and discrimination
      • How can you reduce stigma and discrimination against people with HIV?
      • How does reducing stigma and discrimination help communities?
  • Mental Health and Psychosocial Care for people with HIV
    • Telling someone that they have HIV
    • Psychological and social impacts of HIV
      • On the individual
      • On the family
      • On the community
      • On the country
    • How to provide psychosocial support
      • How to provides support for your patient
      • How to help communities become more supportive of people with HIV
    • Other sources of psychological support
  • Dispelling myths from brainstorm in Unit 2

 UNIT 7: CHW WORK STRATEGIES

    • Roles and Responsibilities of CHV  
      • Active Case Finding
      • Gathering Locator Information
      • Patient follow-up
        • HIV exposed infants
        • Pregnant women
        • Lactating women
        • HIV infected children
          • Not on ART
          • On ART
          • Other household members
          • Filling out Health Passports
          • Tracing defaulters
          • Role at the clinic
          • Community Education and Sensitization
          • Expectations of a CHV
            • Knowing when to say “I don’t know”
            • Professionalism
              • Accountability
              • Reliability and dependability
              • Punctuality
              • Ethics in your work
              • Integrity and honestly
              • Take yourself seriously
              • Confidentiality
              • Good communication
                • With your patients
                • With your colleagues
                • With your supervisors
                • Written communication
                • Respect and tolerance
              • Community Health Worker Strategies
                • How to do a home visit
                • Dealing with potential problems during home visits
                • Developing relationships with your clients
                • Dealing with clients who are not adherent
                • Time management
              • Self-Care
                • Taking care of yourself so that you can take care of your patients
                • Mental self care
                • Medical self care

UNIT 8: COMMUINTY EDUCATION, SENSITIZATION and MOBILIZATION

  • Community Education, Sensitization and Mobilization
    • Skills
      • How to be a teacher
      • Topics for education talks
    • Strategies
      • How to choose topics for education talks
      • Strategies for community mobilization
      • Challenges with community mobilization
      • How to evaluate a health talk?

UNIT 9: INDICATORS AND DATA COLLECTION

  • What is M&E and why do we do it?
  • Gathering data
    • Walkthrough of mastercards, clinic attendance list
    • Monthly targets
    • Spotting the mistakes
  • Organizational Skills

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.

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