Nache

Nache Kisapi has been living at Igoda Children's Village for one year now. He has had a tough life, as his mother, who seems to have given up on life, discontinued his HIV treatment, and later his treatment for tuberculosis. 

Since Nache has moved to stay at Igoda Children's Village he has had expensive, lengthy stays at Hospitals, and we have been fortunate to have several visiting health volunteers come to help keep him in good health.

In May this year his CD4 was tested, and he had a count of 2, or virtually no immunity to any disease. His lungs were both failing due to prolonged lung disease, and just as he seemed to be recovering from pneumonia, he contracted a case of shingles.

At Igoda Children's Village he has received one-to-one care from members of our NGO from the health department, to older students putting themselves through school, to guardians at the Children's homes. Everyone has been hoping for the best, but fearing the worst.

Incredibly his health has taken a turn for the better. After months in his bed and visits in and out of the Hospital, he has now started to get his life back! He has been out of school for more than a year (he is 12 years old) but he now attends the kindergarten everyday with hopes to return to school in the new year. His recovery was the result of a lot of hard work from a lot of extremely caring individuals, and he still has a ways to go to complete recovery, but he seems to be on the mend. 

Our holiday wish this week is for thoughts and prayers for Nache and children like him who are fighting against this disease, and for those who are doing everything they can so these children can be kids again!

Prevention of Vertical Transmission of HIV: A Community Approach

Due to the high prevalence of HIV in the Mufindi district of Tanzania, any HIV preventative measure, such as prevention of vertical transmission through breast milk, is vitally important to the overall health of the community. Local health facilities, and any stakeholders in the health sector, need to consolidate their message on HIV treatment so as to deliver a clear and understandable method of preventing the spread of the disease. Advice to HIV positive mothers on breast-feeding practices has been historically confusing, so added interventions to clarify the message are paramount (Africa: HIV-Positive Women Still Confused About Infant-Feeding Choices, n.d.).  One of the more powerful ways to bring unity to this message is through community involvement, which can have tangible benefits such as lowering the incidence of new infections (Celentano et. al., 2008). A community approach to spreading the message to as many mothers affected by HIV as possible would be most effective in bringing education to all, and adding more than just treatment to the fight against HIV (Lancet, 2001).

By engaging with community members that might not be fully trained health professionals, but are nonetheless seen as leaders in the health sector, the message could be spread most effectively to each HIV positive mother in the community at the grassroots level, as this is a proven method for sharing information in a rural setting (Anafi et. al., 2012). To parlay the message of HIV prevention options to each potential mother affected by HIV in the area, various stakeholders from the community need to be sharing the same message to all of their clients and neighbors. This will ensure a unified message that will make it easier for these women to understand and properly educate themselves.

In order to get the community involved, steps must be taken first to clarify exactly what the problem is, then how it can be solved. An HIV+ breast-feeding mother from this rural area can be easily confused or convinced not to do the right thing if there are mixed messages.  Various community leaders need to be informed together about how the community in Mufindi can better prevent vertical transmission of HIV through breastfeeding in order to avoid mixed messages and to guarantee the correct message is hitting the mark.  One method that could be used is a study circle, in which private meetings can be held with all stakeholders to identify the problem of vertical transmission through breast-feeding, to clarify the options available and initiate a plan on how to educate the public about the solutions.

In this particular instance, the stakeholders comprising the study circle are of upmost importance, as without them, the plan to involve the community would not be able to reach its full potential.  Religious leaders should be involved as their faith based communities listen to them for moral guidance (Trinitapoli 2006). In the majority of villages in Mufindi, there is no access to a clinical officer let alone a doctor, so community members are forced to go to traditional healers and local midwives, called wakunga, who assist community members daily. They should be on the forefront of current health knowledge, as often people seek out their wisdom, and in some cases, trust them more than they trust a doctor of Western medicine (Marlink, et. al., 2009).  Brining these healers up-to-date and on the same side will be the best line of defense the community has to getting the message out quickly and effectively.  Alongside the local healers and wakunga, health care workers, community members that have received a basic training in young children’s health, should also be invited to participate in the study circle.  They meet the mothers in the community every month to educate on nutrition and good health practices, weigh babies and monitor their development, give vaccinations for those in need, and advise mothers on various topics from birth control to teething.  As all mothers in the community are familiar with these health workers already and a trusting relationship has already been established, they are perfect candidates to speak to the public and educate en masse proper breastfeeding practices for HIV positive mothers.  Finally, Home Based Care Volunteers (HBCV) could help spread the word of up-to-date breastfeeding protocols to help in lowering the incidence of HIV in breastfeeding children as they have already made a network of patients in the community and are looked at as reliable, trustworthy advocates for the community members’ health (Ford, et. al., 2013). 

At the study circle, members would be invited to discuss the topic of HIV-positive women breastfeeding and everyone would be educated with a clear and concise solution. Change would then take place after the study circle as the community members would be hearing the same message from all respected leaders of the community: at the health clinic with the doctor practicing western medicine, with the local healer practicing local medicine, when the mkunga helps deliver a baby, when a mother goes to a ‘weigh day’ in the village and finally when the HBCV comes to visit.  Everyone is saying the same thing.  If a community member didn’t trust the first person, but kept hearing the same message from four or five other wise and trusted members of the community, the likelihood they would listen, and therefore react, would increase. 

By getting the key community leaders involved in sharing the message of health education, HIV positive breast-feeding mothers are more likely to hear the message and more likely to follow through with the appropriate intervention. As HIV can be transmitted through breast-milk, it is of extreme importance to ensure HIV positive mothers know exactly how to prevent this vertical transmission.  One strong and consolidated message needs to be heard from all sources surrounding them. Community involvement in HIV prevention is constantly evolving (Heise, et.al. 2013) and engaging the community on this HIV prevention intervention is a leading method for change in this area.

References

1. Africa: HIV-Positive Women Still Confused About Infant-Feeding Choices. (n.d.). Retrieved October 19, 2013 from: Integrated Regional Information Networks website: http://www.irinnews.org/report/94432/africa-hiv-positive-women-still-confused-about-infant-feeding-choices

2. Anafi, P., Asiamah E., Agyepong I., Oduro G.,Y & Owusu-Danso, T. (2012). Using Appropriate Communication Strategies for HIV Prevention Education in Rural Communities in Ghana. Princeton Papers – 120613.

3. Celentano, D., Charlebois, E., Chingono, A., Coates, T., Fritz, K., Khumalo-Sakutukwa, G., Modiba, P., Morin, S., Mrumbi, K., Singh, B., Sweat, M., Van Rooyen, H., Visrutaratna, S., (2008). A Community-Based Intervention to Reduce HIV Incidence in Populations at Risk fro HIV in Sub-Saharan Africa and Thailand. US National Library of Medicine National Institue of Health. Vol. 49(4). pg. 422-31.

4. Community Based Approaches to HIV Treatment in Resource-poor Settings. (2001). The Lancet. Vol. 358. August 4, 2001.

5. Ford, N., Frost, P., Mburu, G., Mwai, G., (2013). Role and Outcomes of Community Health Workers in HIV care is Sub-Saharan Africa: A Systematic Review. Journal of the International AIDS Society 2013. Vol. 16.

6. Heise, L., Slevin, K., Ukpong, M., (2013). Community Engagement in HIV Prevention Trials: Evolution of the Field and Opportunities for Growth. Publications from Path.org AIDS2031.

7. Marlink RG, Teitelman ST, eds. From the Ground Up: Building Comprehensive HIV/AIDS Care Programs in Resource-Limited Settings. Washington, DC: Elizabeth Glaser Pediatric AIDS Foundation; 2009. http://ftguonline.org.

8. Tools, Trends, and New Technologies in HIV Prevention. Retrieved from October 19, 2013 from Interagency Coalition on AIDS and Development website: http://www.icad-cisd.com/pdf/Tools_trends_and_new_technologies_in_HIV_prevention_EN.pdf

9. Trinitapoli, J., (2006).  Religious Reponses to AIDS in Sub-Saharan Africa: An Examination of Religious Congregations in Rural Malawi. Review of Religious Research 2006. Vol 47:3. pg 253-270.

BREASTFEEDING IN HIV+ WOMEN IN RURAL MUFINDI, TANZANIA

The purpose of this paper is to analyze the physchosocial aspect of breastfeeding practices of mothers with HIV in a community located in rural Tanzania, East Africa.  In this particular part of the Mufindi district, the general population has a HIV prevalence of 35% and in women ages 20-60, the prevalence is closer to 44%.(L. Ndenga, personal communications, January 15, 2009)  Historically women have been slightly more affected by the HIV pandemic (Gender Inequalities and HIV, n.d.) and this rural community is no different.  With so many HIV+ women in this community, there is inevitably a concern over vertical transmission, as many women will choose to have a child despite the risks of infection. With no intervention, between 20% and 50% of infants born to HIV-infected mothers will themselves become infected with HIV. (Tolle and Dewey, n.d.) A local grassroots Non-Governmental Organization (NGO) is attempting to curtail the spread of HIV with the intervention of infant milk formula together with seminars related to child and maternal health. As there are very few livestock due to various cultural and historic reasons (B. Katengo, personal communications, 2012) and no healthy alternative milk source for infants and children, this lack poses a serious health risk for all members of the community, as HIV prevention affects nearly every aspect of a developing society. Any solutions, or successful interventions in this health topic may be able to help this community prevent the further spread of this disease, thus reducing childhood morbidity and mortality.

New infections in children are over 90% attributable to mother-to-child transmission according to the International Breastfeeding Journal, including transmission in utero, through labor, and breastmilk (Moland et al., 2010). The particular demographic affected most by breastfeeding choices in this community are HIV+ positive women with low socio-economic status that are often uneducated, sometimes illiterate, with large family sizes. The spread of HIV through vertical transmission is a particularly dangerous public health problem as the prospect of future generations born with the disease will no doubt perpetuate the problem of HIV in this community, thus stymieing any chance for development.

Over time, the increase of accessibility to HIV treatment in the area has given mothers more options for preventative measures. As recently as 2006, there was no treatment of HIV nor any prevention of mother to child transmission (PMTCT) services available in the rural community. Due to extreme poverty, most of the community had no access, as the cost of transport to the closest HIV treatment services in the district capital was beyond the means of most. As more HIV treatment options became available through interventions from the local NGO, together with expanded services provided by the government of Tanzania, more women received treatment during pregnancy, bringing more awareness about the disease within the community. This encouraged more women to know their own HIV status, to be tested, and seek appropriate treatment.  One problem however, was the only sporadic supply of anti-retroviral (ARV) treatment for HIV+ expectant mothers. Women who were hoping not to pass the virus to their children had limited options to increase the chance of prevention through medication. Another challenge was the lack of alternative sources of milk for their children that could be used to prevent transmission through breast-milk.  In 2010, the lack of alternatives to breastfeeding was first introduced to a local NGO working with orphaned and vulnerable children, and people living with HIV. Mothers too ill to produce breast-milk, or too frightened to breastfeed their infants, had been feeding children as young as 1-2 months old sugar water or tea, as no other sources were available. This led to increased child mortality, as even children who were not HIV positive were passing away due to malnutrition. A program at the NGO was initiated to supply these mothers with infant milk formula. The program had some potential for success from the very beginning as bottle-feeding was culturally appropriate to the area, and HIV was so omnipresent that stigma was not a major concern. The biggest challenge came with education. There was a definite possibility that the program could cause more harm than good if the women in the program were not educated on possible negative outcomes of infant formula feeding (Suryavanshi et al., 2003)

            Fortunately, the NGO had previously formed a home based care (HBC) program that was originally meant to follow up on HIV patients that had stopped attending treatment, as well as to improve overall health education at the community level. Two local volunteers from each village were trained in basic HIV knowledge and health education, and they were asked to play a vital role in the success of the milk powder program. Women wanting to enroll in the program came with a reference letter from the local HBC volunteer (HBCV) to enable closer follow up, more education and monitoring.  Women in the program received an initial seminar from a local health care professional on clean water, safe water storage, hygiene of bottles and cups, as well as a seminar on family planning, vaccination status of their infant and general child health issues.  Close follow up on CD4 counts and HIV treatment at the local Care and Treatment Clinic (CTC) was also part of the program, as mothers’ health was equally as important as their child’s.  The HBCV would follow up regularly with each client to ensure that the water used to mix the infant formula and the bottles used were clean and safe.   As more women sought out the services of this program to help their babies survive, a new support group started forming.  Women built relationships with each other, advised and supported each other and began to realize they were not alone, that in fact, there were many women in the same situation as they were.

STRESS AND COPING

Breastfeeding and HIV status can cause a lot of anxiety, guilt, and stress. As an HIV positive mother considers to have another child, thoughts of financial stability, access to medication, access to alternative feeding sources for her child, passing along the disease through generations and social stigma all cross her mind.  The way she perceives the event of having a baby and subsequent care of that child can cause initial distress, as HIV in this particular part of Mufindi is very prevalent and is devastating families and causing fear.  Using the Transaction Model of Stress and Coping (TMSC) framework, it can be interpreted that the community of women immersed in the HIV pandemic are experiencing primary appraisal of the situation, an evaluation and perception of how the severe effects of HIV will threaten their familial structure and themselves.  As many mothers are unable to live with guilt and knowledge that they knowingly passed on the disease, this motivates them to seek information and find support to deal with the guilt, depression, and anxiety (Glanz K., Rimer B.,Viswanath K., 2008).

The next step the women face is evaluating what resources are available to them to prevent the transmission of HIV to their children. They are also likely to research whether they can change the situation, if they can control various outcomes, or how they might be able to control their emotions during such a stressful time.(Riley and Fava, 2003)

Looking at one particular factor-the lack of availability of medications, this is an instance where loss of control can lead to added stress for these women. Mothers may feel anxious and that they have failed their child, as during education and counseling sessions they will have been told they should always be taking prophylaxis, but will be sporadically unable to receive this treatment due to unreliable availability. Continuing with the TMSC model, this could lead interpretations that  mothers may start to deny their true status, and they might have less motivation to adhere to medications and treatment (Gore-Felton and Koopman, 2008).

This leads to the secondary appraisal stage, where overall lack of control, fear and anxiety increase. Lack of an alternative milk source, as another example, can lead to more fear when mothers are told there is a chance they may pass the virus on through breast-milk. Mothers cannot control the lack of alternative source in this area, as there is no tradition of livestock keeping (I. Mwila, personal communications, April 15, 2012). Mothers, to some extent, cannot control their socio-economic status if they are born into this traditionally impoverished area (Gorman, 2012).  This means they cannot afford to purchase milk powder, and the fear perpetuates itself. A woman in this community also has likely experienced the death of multiple children either in her family, of neighbors, or of her own. Finally, even a mother seeking information at her CTC may not be receiving the correct information (Sprague, 2011). or any at all (Phetoe, 2011). The Tanzanian PMTCT guidelines dictate that mothers should receive support and explanations on how to reduce risks of transmission to their child. Counseling, however, can often be sparse, or missing, and this could lead to more fear and anxiety over issues that are out of the mother’s control. All of these psychosocial factors that are beyond the control of the mothers lead to a compounded feeling of fear and anxiety, which in turn can often lead to failings in adherence.

The correct intervention on such a big public health problem is difficult to select, and realize into a feasible solution. The milk powder program initiated by the local NGO was designed to assuage the fears that these women had through their various stages of coping. Starting with lack of availability of medications, the milk powder program mandates all mothers enrolled to attend their scheduled clinic visits, and connects the mothers to clinics that are more likely to have medications. This enables her to continue with her anti-retroviral therapy, and empowers her by bringing more stability to her treatment plan, which is in line with Unicef goals for PMTCT. Another fear due to lack of control the mothers experienced was the lack of replacement feeding for breast-milk. The milk powder program’s primary goal is to supply a sustainable source of infant milk formula for HIV+ mothers, thus taking away another stress. The milk formula is provided for free, and therefore the mothers do not have any added worry about financing the service. This has led to steady enrollment for mothers in the program, as the only requirements are attendance of treatment at the CTC, educational seminars provided by the NGO, village led child ‘good-heath- clinics, and adherence to birth control, all services which are free. Local health care professionals have stated that the program itself is responsible for lowering the infant mortality rate through preventing the transmission of HIV, and improving overall health of the infants through the educational seminars that empower women to make improved health decisions for the diet and hygiene of their children (K. Fute, personal communication, October 1, 2013) Finally, by partnering with other organizations the local NGO brings up-to-date and correct information regarding health education to each member of the program through seminars and frequent visits made by home based care volunteers.

The psychosocial benefits of the intervention of Infant Milk Powder as introduced by the grassroots NGO has greatly reduced the fear and anxiety mothers feel. Even though there are likely more interventions to consider that can positively affect the community, this appears to be a successful program for these women and children in this particular area of Mufindi.

References:

1. Gender Inequalities and HIV.  (n.d.).  Retrieved October 6, 2013, from World Health Organization website, http://www.who.int/gender/hiv_aids/en/

2. Glanz K., Rimer B.K., and Viswanath K. (2008). Health Behavior and Health Education: Theory, Research, and Practice. San Franscico, CA: John Wiley&Sons, Inc.

3. Gore-Felton C. Koopman C. (2008). Behavioral mediation of the relationship between psychosocial factors and HIV disease progression. Psychosom Med. Jun;70(5):569-74. Doi: 10.1097/PSY.0b013e318177353e. Epub 2008 Jun 2.

4. Gorman, A. (2012). Caught in the cycle of poverty. Los Angeles Times, retrieved from http://articles.latimes.com/2012/may/24/local/la-me-natalie-20120524

5. Moland, K.I., de Paoli, M.M., Sellen, D.W., van Esterik, P., Leshabari, S.C., Blystad, A. Breastfeeding and HIV: experiences from a decade of prevention of postnatal HIV transmission in sub-Saharan Africa. (2010) International Breastfeeding Journal, 5:10 doi:10.1186/1746-4358-5-10.

6. Phetoe, T. (2011). HIV Stigma and PMTCT: Dilemmas faced by HIV positive mothers.

7. Riley TA, Fava JL. (2003) Stress and transtheoretical model indicators of stress management behaviors in HIV-positive women. Journal of Psychosomatic Research 54(3), 245–252, retrieved from http://www.sciencedirect.com

8. Sprague, C., Chersich, M.F. & Black, V., 2011. Health system weaknesses constrain access to PMTCT and maternal HIV services in South Africa: a qualitative enquiry. AIDS Research and Therapy, 8(10), pp.10-18.

9. Suryavanshi, N., Jonnalagadda, S., Erande, A., Sastry, J., Pisal, H., Bharucha, K.E….Shankar, A. (2003). Infant Feeding Practices of HIV-Positive Mothers in India. The American Society for Nutritional Sciences 10. Tanzania National Guidelines for Comprehensive Care of PMTCT Services, 3rd edition (Published Jul 2012)  TZ Specific  11. Tolle, M.A., Dewey, D. Prevention of Mother-to-Child Transmission of HIV Infection 12. United Nations Children’s Fund (UNICEF), 2007. Guidance on global scale-up of the prevention of mother to child: towards universal access for women, infant and young children and eliminating HIV and AIDS among children. Geneva: WHO, http://www.unicef.org.

Mufindi Mats!

A fantastic recent visit to the village of Ikaning’ombe led to some great developments, and hopes for a bright future for one women’s group.

A group of women from the village have come together to create a new product for the Threads of Hope income generating line sold through our NGO. 22 round mats were sold to the organization by the group of entreprenurs that will use the income for a variety of important reasons. Some will be able to educate their children, others will be able to make much needed home improvements, and others will be saving their income to use as capital for a business at a later date.

One mother who came to mat collection day with her daughter, upon receiving her payment, jumped up and down and told her child proudly- “You’re getting a new uniform for school!”

These talented women couldn’t be more excited about the developments of the group, and they have big plans.

One idea discussed this day was to create a regular income through sales that could help them hire others to farm their fields, or help get all of their children through secondary school and on to college or university.  Some suggested they could pool their income together to buy land, plant trees, and have an income in the future on which they could depend.

The group continues to make round mats, and they are sold at a few outlets across Tanzania. The NGO is doing research currently on how to become a Fair Trade organization in order to get these mats sold regularly in stores in the US and abroad.

For now, they are excited Mothers making a difference in their lives through their own hard work and talent.