Internship Location: West Africa AIDS Foundation (WAAF)
Supervisor: Dr. NaaVanderpuye
Term: Fall 2015
Throughout the past semester, I had the opportunity to intern at WAAF (West Africa AIDS Foundation). WAAF is an NGO that was built in 1999 and has three different branches located around Ghana. I worked in the Haatsobranch, which is in the Greater Accra Region. Though their main focus is HIV/AIDS patients, they also serve those who have TB, malaria, and other chronic or acute conditions. WAAF’s mission is to battle the spread of HIV/AIDS, TB, and other communicable and non-communicable diseases and decrease the effects on communities through care, support, and program implementation. They have expertise in research, advocacy, care, and support. As part of their mission, they plan programs and outreaches for intervention and prevention of HIV/AIDS and other conditions.
HIV/AIDS in Ghana
HIV/AIDS is a virus that has placed a burden on Ghana’s society and economy in different ways. While working at WAAF I had the opportunity to work closely with children and the LGBT community affected by HIV/AIDS. Because those infected with the HIV virus are heavily stigmatized in Ghana, many deaths and infections occur that could have otherwise been preventable. People sometimes view it as a condition attributed to promiscuity, evil spirits, or fate. Stigma against HIV/AIDS is a compelling reason to many Ghanaians not seeking proper treatment. For the most part, when thinking about HIV/AIDS, society usually thinks about adults including MSM (Men who have Sex with Men) and FSW (Female Sex Workers). However, HIV/AIDS is present in many Ghanaian children. According to the Ghana AIDS Commission, children constitute 15% of HIV patients in Ghana. Of those children affected by HIV/AIDS, as low as 30% receive proper treatment. The main transmission mode for a child to become HIV/AIDS positive is through MTCT (Mother to Child Transmission). In some cases, Ghanaian mothers will find out they are HIV/AIDS positive at the time their child starts to become symptomatic. At this point, the doctor will help the mother understand her status and what the child’s status means. She and her child will be treated for HIV/AIDS with the proper medication, if needed at that moment, and counseling. She will be encouraged to stay in care with her child from that point on so that the doctor can evaluate her every so often and make sure the medications are working as expected. In reality, this is the ideal situation and unfortunately is not what always occurs in all cases.
HIV/AIDS in Ghana- Child Neglect
Based on the statistics provided by the Ghana AIDS Commission on the previous page, we can say that many children do not receive the proper treatment for HIV/AIDS. If only 30% of children are receiving treatment this means that 65% probably have not visited the clinic before
or have not followed through with doctor visits. This can be for varying contributing factors, either poverty, lack of appropriate knowledge, or stigma. Most of the time, poverty is the main contributing factor for children not receiving the care they need. This can be because the mother cannot dedicate so much time to her ill child because she has many other children to care for and work to do. Due to poverty, a family might not have enough money to transport their child to a health facility because they may be already struggling for basic necessities. And sometimes even when they struggle to get the money for transportation, they cannot afford to buy the child’s medication and pay for countless doctor visits. Lack of knowledge can impede the family from making the right decisions. They may see symptoms developing in their childlike a rash, and believe it will go away. It might go away and not come back which then prevents the child from getting any medical attention at all. If the child doesn’t get any other symptoms that might frighten the family and never attend doctor visits for regular check-ups, then the child has a high chance of going into clinical latency and staying asymptomatic, eventually leading to AIDS after eight or ten years. If parents were more educated about the symptoms and effects of HIV/AIDS they might be more inclined to check with a doctor if the symptoms are truly caused by HIV/AIDS. Furthermore, stigma is another reason why HIV/AIDS patients do not find out their status or receive treatment. The judgment that they will receive from their community frightens them and sometimes is so strong that they will make decisions irrationally. I spoke to a Ghanaian woman and she told me that once the child is off the breast, it is basically on its own. If this is the case, I can imagine that an ill HIV child may be abandoned when poverty is hindering the daily lives of the family. As stated earlier, stigma is also a factor that plays into not treating the child. In Ghana, if a child is HIV positive then the rationalizing of why it has the virus comes with community members talking negatively about the family. The child can be seen as possessing an evil spirit, having a bad fate, or even being at fault for its own status. Because the mother perceives that the community may say negative comments about her child, she will prefer to keep her child’s condition a secret. This then contributes to the ongoing cycle of stigma where people do not feel safe expressing their status, thus not receiving support from the community. This same stigma can convince the mother to not seek medical treatment for the child. As mentioned earlier, in many cases the HIV status of the child is kept a secret from the family including the father, leaving the mother to be the only one that knows. There is a child who has been at WAAF for a few years now and is HIV positive. His mother knows her child’s status and has discovered that she is also HIV positive, but the child’s father is unaware of the situation. The child is at a stage where opportunistic infections have developed making it hard to treat and control AIDS. Though Dr. Naa insists that the mother tells the boy’s father, she seems reluctant. Her main reason in keeping the secret from the father is not because of financial or romantic reasons, but simply because of stigma. She is afraid of what her community will say. At this point, it doesn’t become a matter of saving her child’s life but keeping her dignity. She obviously cares for her child and genuinely wants him alive, however, the stigma is impeding her from making appropriate decisions for the life of her son.
In my experience at WAAF and living in Ghana, I have observed how stigma is a contributing hurdle for people not receiving proper treatment. Stigma is not a new concept to me. I have learned it in classes and supposedly understood what it meant along with its possible consequences. However, observing the effects of stigma firsthand have changed my perception and understanding of it. I can now have a more vivid understanding of stigma and the effects it has on victims. Stigma has the power to change people’s lives. It changes and inhibits what they could be, and has the potential to harm them in measures that are unimaginable. Stigma can kill lives. For example, if the reason for a person not getting clinical expertise and attention is due to stigma, the opportunistic infections that come with AIDS will eventually lead to death. I understand that stigma is not the only factor into lack of medical attention in HIV/AIDS patients, but it is a factor that can impact patients’ lives negatively. It is situations like the one of the boy and the mother at WAAF that make me really confused about the meaning of a child’s life to a mother. In the United States, if the mother was putting the child’s life at risk by not taking care of him or by not complying with the decisions the doctor suggested, she would be trialed. The life of a child is viewed differently because of the circumstances and the culture present in this community. I am no person to judge because only the mothers know their true reasons and only they live in their environment. However, in Ghana, I have learned how much of an impact culture and society can influence a person’s decisions even if it affects one individual. In this case, the family of the child and the child especially are affected the most by their decisions. But their decisions sometimes become what their community expects from them. Understanding child neglect from a Ghanaian perspective was a very difficult task for me to do. Denise, the program coordinator of Children’s Rescue and Recovery Mission, once told me that when she found Kwame, she told the chief that the little boy was malnourished. His immediate response was to say that there were many more and what did she want him to do about it. Although this is only one response and one opinion, it still serves to show that some people have lost a sense of compassion for abandoned children and have started to accept the fact. People are struggling to survive and cannot afford to put their lives or the life of a strong child to make the unhealthy one feel better. It is something that I have learned to understand but definitely not accept. Some Ghanaians are struggling daily for food to eat, making poverty a burden to society. The concept of survival of the fittest truly plays a role in the lives of many resulting in child neglect. Child neglect and abandonment in Ghana is common and sometimes seen as acceptable especially in children suffering from HIV/AIDS. Because the issue has grown, it is difficult to cause too much change. It can get very difficult working with a population that is heavily stigmatized. It no longer only becomes about the education of the actual virus, but more of a focus on behavioral change. For example, instead of the mother neglecting the child, as health professionals, we should convince her that the virus does not make her child any less valuable. It is not only persuading the family of HIV patients that the virus should not be a marker with negative connotations, but also society as a whole.
It is a condition, and should not be seen as a reason to discriminate a person. It is easy to say let us educate the population and everything will be better: knowledge is power. Yes, knowledge is power, but as a health professional much isn’t achieved till you know that your audience truly understands the extent and consequences of their actions. In this case, if we can have people understand what it means to be HIV positive, then people will be more careful with their actions. Education must be influential in order to change the thoughts of people. I have learned that education methods change according to the location, audience, and resources. For example, if you have a population of women from rural areas who have not received a proper academic education, as a health educator you must change the way you present the information. You might want to consider using images, anecdotes, and simple words to describe the virus and its effects. In this setting, concentrating more on the effects of the virus will be more helpful than going in-depth with the technicality of the virus. However, if you are speaking to a group of college students, then you can go more in-depth into the actual virus along with its social and biological effects. Behavioral change comes with a lot of challenges that make it difficult to reduce stigma, but if a community of health educators is formed, the stigma will slowly
but surely reduce.
Children’s Rescue and Recovery Mission’s Role in Child Neglect
To ease the number of children who do not receive adequate care, in some parts of the area of Accra, WAAF has created a project called Children’s Rescue and Recovery Mission (CRR Mission), in which I was a part of throughout my time in WAAF. The aim of the project is to rescue children who have chronic and acute conditions such as TB, HIV/AIDS, malnutrition, etc. Children’s Rescue and Recovery Mission aspires to give them the necessary care so that they can live a healthy life despite their conditions. There are two different cases a child can be in. Either they are short-term cases meaning that the organization helps them recover and a guardian can take permanent care after the child has been rescued from the critical state and is healthy. During the stay of those children who have family, their family will be directly involved by learning how to live and raise a child who is HIV positive. The second case is if the child does not have family members either they can stay in the facility or if another organization can provide long-term and more suitable care for the child they are transferred to that organization. This project is ongoing but has not yet been established permanently. There is no permanent facility where children are being taken care of as of now. Currently, Denise is caring for two children, Kwame and Kofi. Kofi was malnourished and has HIV. Kwame had tuberculosis and was malnourished as well. Technically, CRR Mission has started implementing the project by rescuing and recovering children. However, Denise and the boys do not have a permanent place to live in. The hope is to fundraise money and apply for grants so that a facility can be created where children can either live temporarily or permanently according to their case.
Lessons Learned While Working with children’s Rescue and Recovery Mission
When I first came to WAAF and Dr. Naa told me about this project, I was really excited because of my interest in the HIV/AIDS community and orphans. I was assigned to help Denise, but never received much guidance on what to actually do with her project. Despite, a lack in a concrete work plan for CRR Mission, I have learned a lot with the planning of the project. When I first met Denise she had very little documentation of the organization. She knew that fundraising was needed but had never set a budget plan together. I knew that if she wanted to apply to grants, a budget plan was crucial. In the budget plan I indicated the items and expenses that would be needed for a whole year of operation. We thought about the bare necessities and services needed to efficiently run the facility. While creating the budget plan I knew that more expenses than stated would arise. However, I did not want to include too much that our total budget would increase by a lot. But I later learned from a professor that it is better to be realistic and put all the expenses the program will use so that more grants will be given. If the organization providing the grant sees that CRR Mission is being unrealistic, then they will most likely not offer the grant. For example, if the grantor knows that certain services as medical, dentistry and health insurance is not stated on the budget plan and they know it is required for a child, they will most likely not offer CRR Mission the grant because the budget plan is not being well planned. Another thing that I learned while working with CRR Mission is that if grants are not administered as originally agreed on, then the organization receiving the funds can get into legal trouble. Unfortunately, Denise is currently on her own raising two children and working on the mission. I have learned that NGOs usually have low funds, which means that resources and staff are short for the most part. Therefore, proper administration of projects becomes an issue. CRR mission is already faced with this problem. It is necessary for Denise to receive more help not only from other incoming interns but also from permanent staff at WAAF. The need for a person with appropriate administration skills for CRR Mission is critical. The mission of the project is remarkable, but in order for the mission to become a reality, it needs more support from people with appropriate skills and it needs a work plan where more structure can be seen. Once it forms an organized structure with an action plan and more people become a part of it, then the project will be successful and achieve its goal. The need is crucial and so are the funds. It is a big project where over 28,000 dollars are needed, but I know that when the center is created it will benefit many children and save their lives. However, I am concerned for the allocation of funding and I am also worried that when the money is granted administration will be weak because of lack of staff. I know that the care will be exceptional but the administration of funds is worrisome. The project has already saved several children’s lives including Kwame and Kofi and it can save more if only there are financial resources. It really saddens me that due to the lack of money, so many people’s lives are put at risk. I suggested making a constitution because having such a document would help give more structure to the organization. This way if there is ever a person interested in funding the organization, they can look at the document with all the information. I have been able to create a budget plan, a constitution, and a plan for fundraising ideas. I had no previous experience in creating such documents but by asking professors and looking at previous documents from other organizations, I was able to create a draft of the constitution and budget plan. Working with this project and in the internship as a whole was a unique experience. I learned some skills needed to complete certain projects as needed. I was able to adapt to an environment where few resources were available and really understand the concept of “work with what you have”. Despite the obstacles posed, what kept me going was seeing, Kofi and Kwame. Seeing how they had developed into strong and happy boys made me realize that although the percentage in abandoned children with chronic conditions would not decrease by much, the impact of the individual child was far more important. Kofi’s case is one that is complicated but helps give a better understanding of what must be done in certain cases. Because Kofi’s mother has passed away and his father is an alcoholic, he cannot return to his family even though he is stable from his HIV. In this situation Kofi will need to go to another organization that will be able to offer him a permanent home, since Denise is unable to do so at this moment. The logistics and legal approaches are complex. For this reason there must be written procedures of what should be done in distinct situations so that CRR Mission can function legally, successfully and efficiently.
Lack of Resources for HIV Patients in Ghana
Just like funding is an issue in the creation of the facility for Children’s Rescue and Recovery Mission, availability of resources is often an issue in the treatment of HIV in Ghana. There is a lack of resources because there is low availability of ART and there exists a lack of proper administration when supply is sufficient. Because there are not enough ART to give, not every Ghanaian who tests positive will receive treatment, allowing opportunistic infections to develop at a higher rate. Where treatment is available as soon as HIV is screened, the chances that a person will develop opportunistic infections are minimized. In the United States, once a person is screened and tests positive for HIV they are put on treatment. However, this is not the case in Ghana. Unless the patient has a CD4 count of 350 or less then they will be given ART. Or if their conditions prove that they are unhealthy and need ART immediately then the doctor will prescribe medication. It is shocking to me that the countries that most need ART are the ones who least have it. There is not only a concern for the availability of ART, but a major issue is not having access to clinics. Impeding the reduction of PMTCT (Prevention of Mother to Child Transmission) is the lack of accessibility of clinics in rural communities for women who plan on being pregnant. Testing their HIV status can influence their plans for family and can help reduce the transmission of HIV to the child. If there is access to clinics that test for HIV, there can be more education on the prevention of MTCT (Mother to Child Transmission). Those mothers who do not have easy access to a clinic, they must sacrifice a whole day’s worth of work, which means giving up income. Many are not willing to put in the effort, time, or money. It does not only lie in the accessibility or availability of resources but also in having proper education about HIV/AIDS. If mothers were more knowledgeable on ways to prevent getting HIV/AIDS then the incidences of MTCT would decrease. If mothers were to be educated well, then children would not be sentenced to a whole life of taking ART. But even if they were HIV positive then they could take the right measures to make sure their child does not become positive as well by taking ART before pregnancy, during pregnancy, and after pregnancy. Doing so would decrease the viral load and decrease the chance of the child getting HIV. If the child tests positive for the virus there is a treatment that the baby can take. There are definitely ways to prevent MTCT but it is a matter of implementing them and having the community understand. Resources, education, outreaches, money, can all be there but if people are not willing to comply then it is a lost cause.
Stigma and HIV/AIDS in the LGBT Community in Ghana
Just like children have been impacted by stigma and HIV/AIDS, the LGBT community in Ghana is facing a similar but distinct burden. I also had the opportunity to work with the LGBT community. This community is very unique and requires a different type of services because of the stigma they face as LGBT. Depending on where they live, their identity can pose a threat to their lives. There was a case in Nima in the past month where a homosexual man was beaten simply because of his sexual identity. Many of the times police officials even encourage such behavior against the LGBT community and may even take a part in it. In Ghana, it is illegal to have sex with a person that has the same sex identity as you. But in order to prove someone is guilty, the person who is trialing them must have proof. However, people may not have proof of their statements yet they will judge if a person is LGBT based on what others may say. Simply because there is a law against LGBT, this encourages stigma against them. The issue stems from the government and its belief systems. Because of the stigma this community tends to stay together to give each other support. Thus, they tend to be concentrated in certain regions. The LGBT community is in a complicated situation. Their identity is already stigmatized and depending on their HIV status the stigma will augment. One of the outreaches I was a part of in Nungua, there were nine MSM (Men having Sex with Men) living in one small room. When I heard the quantity of MSM living in that location, I was shocked. If one of the men had HIV or AIDS there was a high chance that he would infect his roommates as well. Despite the high risk of infection, this case serves to show how they feel the need to stay together. Either this can be for acceptance, comfort, or for financial reasons. I believe that in this situation, they stayed together for comfort and financial reasons. The landlord where these people were living accepted the group and did not charge them for rent because according to her, they kept her happy. Because the landlord has accepted them they feel free to express their true identity in their community. People in that specific community did not stigmatize against them because the landlord accepted them. She has even made a connection with the police whom she reports any violence done onto the MSM. It is a totally different situation when you have a community where there exists acceptance of your sexual identity and where authorities are fair with their work. Even though these men living in one room do not have the best living situation, the social environment they live in is far better than other LGBT Ghanaians because they are accepted for the most part. MSM have one of the highest incident rates of HIV/AIDS in Ghana. Because they are a key population they should be tested frequently, given comprehensive prevention, have accessible treatment, and they should have availability to proper care. Guru, one of the nurses of IHCC also works at a site where she offers free counseling and testing of HIV/AIDS. She has noticed that the LGBT community does not attend the clinic as much as the general population. Even though many of them know that her services are there, they are reluctant to attend. She realized that she had to get herself to them if they were not going to go to her. The time I went to Nungua with Guru, she gave me the opportunity to test the patients. I was caught by surprise because I thought that an expert had to perform those tests. I faced my fear and told her that I would be willing to perform the tests. Of the six MSM I tested, two were positive. It was daunting knowing the status of the patient before Guru or the patients themselves. The reactions we received from the two different patients were very different. One was really surprised and said how could he be positive. And the other one kept quiet and just nodded. Guru told both clients that the test we had just performed needed to be confirmed. She emphasized how crucial it was for them to go to the clinic, because if they were true positive they must begin taking medication if their CD4 level was 350 or less. Guru couldn’t perform appropriate counseling for the men because we were in a home where people were coming in and out. A more appropriate place when doing outreach is needed to make sure that the patient fully understands what it means to have a positive result at that moment. If only there was a movable clinic where complete privacy can be attained, the services given would be exceptional. However, because of lack of resources and funds, outreaches must be done in public areas or people’s homes. It is unfortunate that complete privacy isn’t given because sometimes the last time you will ever see the patient who tested positive is during the outreach.
Likewise, of those who tested positive none went to the clinic the following week nor the week after. I believe that this happens because people are scared that they actually do have the virus. Confidently knowing of their status will put them in a situation that they would have to disclose to their partner, which can then lead to stigma. It no longer becomes the stigma from society but also the stigma they carry against themselves. They may feel that their life is no longer valuable and can no longer have a normal life. Of course, Guru explained to them after their test was positive that they can certainly have a normal life but certain lifestyle changes must occur. Despite knowing treatment is available and accessible, ignorance is bliss and they would rather not know. It is frustrating that there is no follow-up from the patients because you are going to them and giving them the information and services needed. But when it comes to them doing their part, they either want more for it, or refuse to respond to further advice. However, they may not do their part by going to the clinic to retest because of stigma and fear. It is crucial to educate not only our key populations as MSM but also the general population so that the stigma against those with HIV is reduced. If we can all see HIV/AIDS as any other condition, we can then reduce incidence by promoting testing and adherence to treatment.
Reducing stigma is a more difficult task to do than merely education or testing. Reducing stigma calls for behavioral change, something that many people are not willing to do. However, with education and acceptance of the virus, the stigma will reduce. Having prominent figures of society talk about HIV/AIDS will encourage HIV to become part of our conversations. It is unfortunate how much the mentality of other people can influence whether or not the life of an individual is saved.
Lessons Learned at WAAF
I have learned a lot by working at WAAF. One important skill I learned was working in an environment where plans can constantly change because of the culture and an environment where resources are very limited. I heard and knew that in the developing world resources are limited because funding is always an issue. In the outreach, I realized and personally saw what was really meant by having a lack of resources. For example, to dispose of the pricks we didn’t have an appropriate sharps disposal container so we threw them in a Tampico plastic bottle. This would obviously not be accepted in the United States; lack of resources pushes people to be creative and use what is available. To give more privacy in one of the outreaches, we used cloths to cover some of the sides of the tent since the tent was placed on the street. Even though hanging clothes around the tent still did not give us complete privacy, something was better than nothing.
The fact that patients are not given ART unless their health is poor or CD4 count is less than 350 shows that these guidelines are simply due to lack of resources not allowing for efficient response to the needs of its community.The government is struggling to provide the necessary medications when needed because there is a lack of resources. When the patient has a CD4 count higher than 350 and is not taking any ART medication, if the patient does not use condoms during sex there is a higher chance of infecting another person because their viral load is not being controlled with ART. This then creates a burden on the lives of HIV patients by putting them and others at risk. It was not easy adapting to an environment like this but it will help me in my future. The idea of understanding people’s cultures before treating was reinforced through this internship. Culture has such a big impact in treating and screening for an illness. It is crucial as health practitioners to understand what the patient’s thoughts are about the virus first before providing any medical expertise. From my academic lessons in public health classes and experiences in WAAF, I believe that it is important to ask patients who are HIV positive a list of questions:
- “What do you think causes viruses? How do you think it can be treated? What are your social consequences if you are HIV positive and how will that impact you? If you have the virus, does your perception and value of yourself change? Is there an economic burden if you are in a situation where you must treat the virus?” The list can continue but this is a brief summary of
what I think can help create a better understanding between the health practitioner and the patient. These questions can help in understanding the patient for any illness. Likewise, it is important to acknowledge the patients’ belief system and take them into consideration when counseling and testing. I believe that if as a health professional you are able to incorporate the patients’ beliefs with the medical procedures for an HIV patient, then there will be adherence to treatment and a more substantial dialogue between both parties when creating the best treatment strategy. If the patient knows that you respect their beliefs they are more likely to trust you and respect your opinion. For example, saying something like “I respect that you believe that HIV is caused by evil spirits, however, to make you feel better you should begin taking ART. Taking ART will help decrease the strength of the virus, therefore make you feel a lot better.” Understanding the patient will help you, as a health professional, know why the patient chooses certain actions. My experience in WAAF has helped me focus and understand the path I would like to take in my future career. Because of the internship, I realized my interest in working with patients who have HIV/AIDS and I am now looking for other opportunities in California in this field. I am hoping to go back home and concentrate in the Latino community affected by HIV/AIDS/ In conclusion, HIV/AIDS is constantly causing a burden in people’s lives and it is up to the community and health sector to ease the affects of the virus socially, economically, and culturally. It is important for the community, health professionals, government, and organizations to come together to help reduce the incidence of HIV/AIDS in their communities. Children are the last people in our society who should be affected by this chronic condition. The LGBT community should be able to feel comfortable going to clinics to receive HIV/AIDS related services. We must join together and decrease the incidence of HIV/AIDS cases.