A Funeral and some children (Jan 17th)
About a month ago I had a young boy come to me with a problem. He was studying in form 2 (grade 10) and has passed the entrance exam to proceed on to the next grade. However, his mother has been sick for some time and what would have been his school fees was sent with her to Mzuzu to pay for her keep there. These stories of needing money are not new to my time here, but I felt bad for the boy who was obviously struggling to break his pride and ask for some help. I didn't want to just hand him the money for the term (About 12 dollars per term, three terms in a year) so I asked that he do some piece work (cut the weeds around my garden). It took him about an hour to do and his school fees for his first term were agreed to be paid.
I believed that would be the end, however a very unfortunate turn of events had me attending the funeral of this boy's mother. She passed from the illness that has been keeping her sick and left behind six children orphaned in the village. The boy is now in charge of his siblings and will have to ensure that they are somehow cared for. Now I see that the rest of his school career (1.5 more years) will require assistance which is something I can manage on my living allowance. So I am helping him and hope that he can only manage with the domestic side to things.
This is a brief story and I don't tell it to make myself look like any sort of a saint, but to give an image to a very common part of life here. This is a regular reality for many people with Malawi's large families, poor health care, slow rural development, economic instability…. It's all connected leaving orphans and young children being the heads of households that they merely had the misfortune of being left with. What does one do? What can you do when there are more cases to help each individual and a web of issues causing it all to happen? You learn from it I suppose, count your blessings, and help as many along the way as you can.
Field Research (Jan 30 2010)
I had the fortunate chance to work with a local NGO (LISAP-Livingstone Synod AIDS Programme) with a field research project on PMTCT (Prevention of mother to child Transmission) of HIV. We spent two weeks in three rural hospitals (Enuthini, Katowo, and Chintheche) speaking to health workers and members of the community about PMTCT and male involvement in women's health services. My side of the work was to interview 'key informants' to see what services were offered and how they accommodate men if they were to come to test with their wives and/or to ante natal services. In addition I was sent into the communities to find women who are currently living with HIV and are pregnant or have given birth recently (up to 1.5 years the child can still get HIV from breast feeding).
I spoke to women who have told no one their status, only one who was open to the whole community, one who had lost two children before they reached 1 year old, another who was still denying that she could have HIV, and many who were living without any support from anyone to get through. It was intense and educational and eye opening all at the same time. It was exhausting walking foot paths trying to find them and emotionally tormenting to speak to the women and know the lives they have been dealt. They are getting medicines to help stop spread during pregnancy and child birth, but several didn't have money to stop breast feeding in time to not give it to them 6 months later.
The following are my research findings if you are interested:
My research in the PMTCT program had two sides: one was speaking to the health workers as key informants to see what services were offered at the rural hospitals and the second side was to speak with women currently enrolled in the PMTCT program. From these two surveys and types of discussions I was able to learn a lot about what is and is not offered to women and men in these areas. In addition there were case studies which I have pulled out to draw attention to areas which I have seen crucial to understanding and correcting challenges in the program.
From the health workers I have found that overall the PMTCT programs are not functioning to their full capacity. There are many holes as they are not supplying full services to their clients and thus not completely reducing the risk of MTCT. The largest piece missed in the program is that of supplementary feeding. The health workers claimed that if a woman were to stop breast feeding at 6 months then there is no milk supplement they would be able to provide.
Case study: One young woman I met in Katowo spoke about this problem specifically as her child is now 8 months and still being breast fed. She asked if it was ok for her to continue and while the HSA, who was serving as my translator, seemed unsure; I told her to speak very strongly about the mother stopping immediately. The client claimed to not be able to afford to do so, and sadly it seems that she will continue to breastfeed. The child was healthy at the time of our visit, but I fear that this will not last long as the HSA informed me that there was nothing the hospital could do to aid her.
In addition, there are a lack of community structures available to help aid in education about PMTCT. There are some groups working with overall HIV/AIDS education but not specific to our research area. With that I fear that this means there is much more work being placed on the hospital to educate men and women about the importance of this area of health. It will take time initially to gather a group and educate them effectively for working in the communities, but in the long run it will work to the advantage of the hospitals to have volunteers disseminating the information.
The last significant finding from the health workers is that they are all very eager to pull in spouses for ante natal and PMTCT services, but have had few come in to their facilities. It is encouraging to see that all the workers I spoke with saw the advantages to having husbands more involved, and suggested several options for how this could happen in the communities. Refer to the survey (question 7) to see their suggestions of which I feel several would be doable at the village level.
Secondly, with that of the women I interviewed there were many areas which I found to come out as surprising and significant to the study. The largest and most crucial to the health of the women is that about one-third of those surveyed claimed to have no support at all (this includes from spouses, health personnel, community members, and family). This makes acceptance of their status difficult as well as seeking services with PMTCT not easy to afford and search out. Without emotional and financial support the PMTCT program will not work effectively to ensure the health of the mother and child.
Case study: One woman I spoke to was very poor, malnourished, and has not disclosed her status to anyone for fear of stigmas. She tested less than a month before our interview and in that time has come to the conclusion that there is no way the test result was correct. As a result she had decided to not seek PMTCT services and to continue without support or acceptance. This is especially troubling for the health of the woman as she spoke of going several days without taking food and felt that there was nothing wrong other than a lack of access to food. After discovering this we called on a fellow worker to give her counseling in the field and attempt to convince her to return to the hospital to seek services. In parting she seemed to be accepting of the advice, but there's no access to follow up.
Another point about support came out when the women were asked what services they were provided when found to be HIV positive and pregnant (Section B, Question 2). Nine cited no support and 11 claimed to only receive the ARV medicine. This is increasingly upsetting as it left to question if the PMTCT is even supplying the minimal levels of service. Even more upsetting about this point is that no clients cited health personnel as supplying any support at all. They seem to be giving the medicine and nothing else.
Case Study: In all of the health centers we struggled to find the women in their villages. This tells me that there is no relationship between the health centers and the women involved in the PMTCT program. There were fewer than 20 women enrolled in each area surveyed, so to form a better patient relationship would not require keeping track of many people. As is it now the women are unable to be found in their villages (several instances saw us not finding anyone at all), unknown by the health workers (health passports were checked to make sure we had the right women), and an overall anonymity. This leaves problems with follow up, support networks, as well as the PMTCT program on the whole.
Positively, all of the women surveyed have given birth in a health facility. It seems that the distribution of ARVs and disseminating the massage to give birth in the hospital has been the most successful part of the program. Women are, by result, preventing transferring HIV up through to the time of birth. The children are tested several times in their first 1.5 years of life and in that time I fear most are getting HIV simply because women are not stopping breastfeeding. As stated earlier in this report it appears to be very common for women to hide their status and/ or to not be able to afford supplementary feeding for their babies. This is hopeful as it is completely controllable, but there are barriers of culture and stigma in the way of solutions.
Case Study: I met one woman whose husband is HIV positive and has not disclosed to his wife (she only knows by sneaking a peak at the health book). While she remains positive and thus does not qualify for the survey, I believe I was able to learn about this other side to PMTCT challenges. The woman is finding it difficult to protect herself while her husband refuses to come open about his status. She has three kids, two of which have already been admitted to the hospital for serious health problems, so the fear of having another which would be HIV positive is a serious risk. From this is can be seen that the failure to disclose ones status is happening in many areas and is putting many people at risk in the villages.
In summation, my findings are reported in the following pages and can be reviewed for further information. On the whole I have found that our original thoughts were correct in the fact that men are not involved in the health services of their spouses. However, there are many other problems facing PMTCT which will also need to be addressed in order for the service is to be carried through successfully. The minimal services offered now are simply not doing the job at cutting back significantly on MTCT.