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Replacement Feeding Experiences of HIV-Positive Mothers in Ethiopia Bogale Abera Woldegiyorgis a & James L. Scherrer b a Hawassa College of Teacher Education, Hawassa, Ethiopia b Graduate School of Social Work, Dominican University, River Forest, Illinois, USA Version of record first published: 12 Mar 2012.
To cite this article: Bogale Abera Woldegiyorgis & James L. Scherrer (2012): Replacement Feeding Experiences of HIV-Positive Mothers in Ethiopia, Journal of Community Practice, 20:1-2, 69-88
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Journal of Community Practice, 20:69–88, 2012 Copyright © Taylor & Francis Group, LLC ISSN: 1070-5422 print/1543-3706 online DOI: 10.1080/10705422.2012.648123
PART 2: POLICY
Replacement Feeding Experiences of HIV-Positive Mothers in Ethiopia
BOGALE ABERA WOLDEGIYORGIS Hawassa College of Teacher Education, Hawassa, Ethiopia
JAMES L. SCHERRER Graduate School of Social Work, Dominican University, River Forest, Illinois, USA
The World Health Organization most recent guidelines recom- mend that HIV-positive mothers exclusively breastfeed unless replacement foods meet the criteria of acceptability, feasibility, affordability, sustainability, and safety (AFASS). However, the fear of HIV transmission through breastfeeding has pressured these mothers into choosing replacement feeding whether they meet AFASS criteria or not. This choice has subjected infants to malnutrition and related deaths. This qualitative study is based on Scheper-Hughes and Lock’s (1987) Three Bodies Model. Discussions were carried out in a Prevention of Mother-to-Child Transmission Program (PMTCT) in Hawassa, Ethiopia using in-depth interviews, key informant interviews and focus groups. The study focused on the challenges that HIV positive mothers face due to inadequate counseling services, poor economic situations, and lack of support and follow up. The Three Bodies Model exposes the deficits in the comprehensive delivery of services by PMTCT pro- grams. Implications for social work practice and funding policies are discussed.
KEYWORDS replacement feeding, social meanings, PMTCT, HIV/AIDS, breastfeeding, mothers
We acknowledge Haile Michael Tesfahun, Addis Ababa University, School of Social Work, for his critical comments on the original thesis. The research was funded through Addis Ababa University, School of Social Work.
Address correspondence to Bogale Abera Woldegiyorgis, Hawassa College of Teacher Education, P.O. Box 115, SNNPR, Hawassa, Ethiopia. E-mail: [email protected]
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70 B. A. Woldegiyorgis and J. L. Scherrer
The emergence of the human immunodeficiency virus (HIV) epidemic in the past few decades threatened breastfeeding as a safe and healthy method of feeding infants in economically distressed parts of the world. The World Health Organization (WHO) Update (2007b) recommended that HIV-positive mothers exclusively breastfeed their infants unless replacement feeding, which does not include breast milk, meets the criteria of accessibility, feasi- bility, affordability, sustainability, and safety (AFASS). However, HIV-positive mothers often choose replacement feeding whether or not AFASS criteria are met, because they fear transmitting the HIV virus to their infants through their breast milk. When AFASS criteria are not met, infants are subjected to malnutrition, infections, and diseases that may result in death. The purpose of this study is to assess the difficulties in replacement feeding experiences faced by HIV-positive mothers enrolled in the prevention of mother-to-child transmission (PMTCT) program in Hawassa, Ethiopia. The study aims to know the challenges HIV-positive mothers faced in their infant feeding experience, how community infant feeding practices and social meanings influence feeding choice, and how replacement-feeding mothers feel about the support and services they receive.
This qualitative study uses the Three Bodies Model (Scheper-Hughes & Lock, 1987) to set up in-depth interviews with HIV-positive moth- ers, breastfeeding counselors, and members of the HIV community. The interviews were transcribed and analyzed to discover common influences on HIV-positive mothers’ decisions to breastfeed, replacement feed, or mix feed their infants. In addition, common themes about support and information provided to them were explored. The implications for future social work community practice are examined and courses of action recommended.
PMTCT OF HIV
Feeding options for infants of HIV-positive mothers are either exclusive replacement feeding or exclusive breastfeeding (Koniz-Booher, Burkhalter, de Wagt, Iliff, & Willumsen, 2004). However, both feeding options involve risks to child health and survival. Although exclusive breastfeeding is more practical, it has a 5% to 15% chance of transmitting HIV to infants (Israel & Kroeger, 2003). This incident rate of mother-to-child transmission could be reduced through drug intervention, and an awareness of precautions such as minimizing the duration of breastfeeding (WHO, 2003). Exclusive replacement feeding is an ideal option, because there is no chance of HIV transmission. However, it is difficult to apply in resource-limited nations, where exclusively replacement fed infants have a six-fold increased risk of dying in the first 2 months of life, compared with those who were breastfed (WHO, 2008).
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Replacement Feeding Experiences in Ethiopia 71
Over 530,000 new cases of pediatric HIV infection occur each year throughout the world, primarily due to mother-to-child transmission of HIV (WHO, 2007a). In resource-rich settings, prenatal transmission rates of 2% or less are achieved with the use of a combination of antiretroviral, obstet- rical interventions and avoidance of breastfeeding. HIV-positive mothers in such settings can safely provide formula to their infants so that they can avoid breastfeeding. In resource-limited settings, however, alternatives to breastfeeding do not usually meet the requirements of AFASS for many HIV- infected women. HIV-positive mothers tend to overestimate that all breastfed babies will be HIV-infected. As a result, they exclusively replacement feed their infants, even though AFASS criteria are not met (Koniz-Booher et al., 2004). A study in Tanzania showed that replacement feeding is rare in a breastfeeding culture, because the community believes that infants cannot survive without breast milk (Leshabari, Blystad, & Moland, 2007). Thus, exclusive replacement feeding in early infancy violates the rules of good motherhood. Those who practice it are considered failures as mothers. As a result, the community pressures HIV-positive mothers to mix breastfeeding with replacement feeding.
Replacement feeding also has some negative socially constructed mean- ings (Leshabari et al., 2007). Replacement-feeding mothers are thought to be concerned more about their body shape than child rearing, and to engage in extramarital affairs, or to be HIV positive. Njunga’s (2008) study in Malawi recommended that PMTCT programs should take into consideration the spectrum of such cultural factors that influence experiences, behav- ior, and attitudes (Sevelius, 2011). Partners and/or family members of the replacement-feeding mothers may attempt to exert control over her feeding method (Koniz-Booher et al., 2004). Unless partners and family members are involved in the infant feeding decision, adherence to replacement feeding will be challenging (Aubel, 2011). These mothers also face the challenge pre- sented to them by rapidly changing recommendations from WHO (Moland et al., 2010). The WHO (2001) guidelines recommend that mothers meet AFASS criteria before choosing replacement feeding as the form of nutri- tion for their infants (Koniz-Booher et al., 2004; Koricho, Moland, & Blystad, 2010). If AFASS criteria cannot be met, these mothers should exclusively breastfeed their infants. These guidelines were in effect until 2007, when WHO shifted the focus to breastfeeding first and AFASS criteria second. They were changed again in 2009, and still again in 2010, to reflect ongo- ing research in what would keep infants of HIV-positive mothers, and the mothers themselves, healthy. Current guidelines differ significantly from those of 2001, yet many postnatal counselors have been trained only to the 2001guidelines (Moland et al., 2010; WHO, 2010).
AFASS criteria may impose significant economic challenges for moth- ers choosing to replacement feed in Ethiopia (Koricho, 2008). Health care centers may provide formula for replacement feeding of infants, but often
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72 B. A. Woldegiyorgis and J. L. Scherrer
it is not enough. Mothers are then forced to use replacement feeding meth- ods that do not meet AFASS criteria. The issue is further complicated by the fact that health service counselors only examine the affordability por- tion of AFASS and nothing else. Even the availability of free formula may not ensure that the decision to replacement feed translated into successful practice (Koniz-Booher et al., 2004). Besides knowing their HIV status and having access to free or subsidized formula, these mothers needed proper advice from counselors, partner or family involvement, better educational level, assistance with being the primary income provider, and participation in structured PMTCT programs. Instead, HIV-positive mothers were often exposed to conflicting messages from the local mission hospital, family members, and traditional healers (Bond, Chase, & Aggleton, 2002).
Mothers using replacement feeding in a breastfeeding culture faced criticism from the community and were given some negative social mean- ings, which PMTCT programs overlooked. However, a study of HIV-positive mothers in Botswana (Nyblade, Kidd, & Field, 2000) indicated that moth- ers were able to override any traditional norms by prioritizing their infants’ health. This, coupled with the benefits of follow-up counseling (Matovu, Bukenya, Musoka, Kikonyogo, & Guay, 2002), was hampered by a slow and crippled program beginning that has limited access to HIV/AIDS-related services. As a result, replacement-feeding mothers were trapped between the demand of the health care system wanting mothers to either exclusively breastfeed or exclusively replacement feed and the community cultural prac- tice demanding them to mix feed. They also struggled with the control efforts from their partner and in the home environment (Aubel, 2011; Bland, Rollins, Coutsoudis, & Coovadia, 2002).
Mulugeta’s (2008) study of economic and social adaptations of women in Addis Ababa, Ethiopia, found that HIV-positive mothers using replace- ment feeding methods employed various strategies to cope with the challenges facing them. They entered formal and informal employment sec- tors, diversified survival strategies, went on informal migration, minimized household expenditures, changed dietary habits, and sought the support of family members, friends, and other kin. Informal associations also provided crucial supportive roles. Generally, replacement feeding in resource-poor settings caused more harm than good to infant survival and became a source of fear and challenge for mothers in Africa who could not afford to buy even their own meals. This was supported by Sethuraman et al.’s (2011) study of rural Vietnamese HIV-positive mothers. They found that replacement feed- ing occurred early out of necessity and social pressure even though AFASS criteria were not met.
PMTCT of HIV services are being rendered in all hospitals in regional towns and in satellite health centers in Ethiopia (Amare & Deneke, 2003). According to the Ethiopian Federal Ministry of Health (2007), the preven- tion of HIV transmission from infected women to their infants is one of
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Replacement Feeding Experiences in Ethiopia 73
the strategies of PMTCT. A behavior surveillance survey in Ethiopia found that HIV/AIDS-prevention programs have some impact on knowledge about HIV/AIDS (Federal Ministry of Health, et al., 2006). However, neither the increase in knowledge of HIV/AIDS nor the WHO Update (2007b) rec- ommendation that infant feeding counseling and support for HIV-positive women be provided during pregnancy and for 2 years after the infant’s birth have led to corresponding behavior change (Federal Ministry of Health, 2009). According to a World Bank (2008) report, to date only 2% of HIV- positive pregnant women needing PMTCT have benefited from the service in Ethiopia. In 2006, only 2,028 pregnant women received Nevirapine, of whom only 1,341 took a complete course for themselves and their infants. Although 1,400 sites are planned to have PMTCT services by the end of 2007, only 184 sites provided the services.
THE THREE BODIES MODEL
The results of these studies can be synthesized using Scheper-Hughes and Lock’s (1987) conceptual framework, The Three Bodies Model (see Figure 1). The framework analyzes the body using three different approaches, representing three levels of analysis. The first level is the indi- vidual body, which is the lived experiences of the body self and the meaning attached to these experiences. The second level is the social body, which refers to the body as a natural symbol with which to think about nature, society, and culture. The social body is developed through being a member of a particular social or cultural group. The third level is the body politic, referring to the regulation, surveillance, and control of bodies.
Social Body: Infant feeding
culture and social
meanings
Coping Strategies
Exclusive Replacement Feeding (ERF)
Politic Body:
Control in home and
health care systems
Individual Body:
Feeding challenges,
perceptions, and fears
FIGURE 1 The three bodies and exclusive replacement feeding. Source. Developed by the authors from the concepts presented in Scheper-Hughes and Lock (1987)
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74 B. A. Woldegiyorgis and J. L. Scherrer
Incorporated in this framework are feeding-related challenges that HIV- positive mothers face: fears regarding feeding choice, influences and social meanings of community infant feeding practices, and controls exerted over the HIV-positive mother in the home environment and by the health care system. HIV-positive mothers are faced with the infant feeding dilemma of exposing their infants to HIV infection through breastfeeding, or replace- ment feeding which, although HIV-free, exposed infants to malnutrition and infectious diseases. In addition, because breastfeeding is socially con- structed as being an essential feature of motherhood, replacement feeding reflects negatively on the mother’s commitment to motherhood and her chil- dren. Husbands, mothers, mother-in laws, friends, and communities apply pressure to the HIV-positive mother at least to mix breastfeeding with replacement feeding. Finally, the HIV-positive mother is faced with chal- lenges in implementing the requirements of the health care system with limited resources. According to Leshabari (2007), the interconnectedness and dynamics of these influences and challenges are well illustrated by this framework.
RESEARCH METHODS
The study was conducted in 2009 in Hawassa, Ethiopia, a small city of about 157,879 residents (Federal Democratic Republic of Ethiopia, Office of Population Census Commission, Central Statistics Agency, 2010). Participants in the study were drawn from Hawassa Referral Hospital (HRH), Tilla Association of Women Living with HIV/AIDS (Tilla), and key informants from the community. HRH is the only government hospital in the city and it provides free PMTCT services to Tilla members, most of whom replacement feed their infants. An ethnographic research design was used, to obtain a holistic picture of the infant feeding practices of HIV-positive mothers. Selection of participants sought to obtain respondents representing each of the Three Bodies. Seven exclusive-replacement-feeding mothers who used varied methods of replacement feeding such as formula, cow’s milk, and gruel represented the individual body. The respondents were selected using maximum variation sampling, a technique that purposefully selects a wide range of variations on a dimension of interest (WHO, 1994). None of these mothers completed high school. Their family income is less than $20 US per month. Their average age was 27 years. All were married except one. Their family size ranged between three and 10 children. Four counselors in HRH and Tilla represented the body politic and were selected by intensity sam- pling, a sampling technique that focuses on excellent, but not necessarily extreme, examples of the phenomenon (Ulin, Robinson, Tolloy, & McNeill, 2002). Their experience in infant feeding counseling ranged from 1 year to 6 years. Three female Infant Feeding Counselors, who have a diploma in
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Replacement Feeding Experiences in Ethiopia 75
nursing, from HRH and one male nurse, who has a Bachelor of Science in nursing, from Tilla participated in this part of the study.
Key community members, selected by homogenous sampling (Ulin et al., 2002) and divided into two focus groups of seven members, rep- resented the social body. This sampling technique is typically used to select people with similar characteristics and a common identity to discuss and share their experiences in focus groups. One focus group consisted of older (ages 30–40) HIV-positive women from Tilla who did not participate in the individual interviews. The other focus group consisted of older (ages 45–65) HIV-positive men from the Union of Iddirs of People Living With HIV/AIDS. Iddirs are community-based organizations set up for arranging burial ceremonies of a deceased member, comfort the family on the loss of the beloved one, and support one another during problematic situations. Currently, the government has started to include them in efforts to solve community problems like helping orphans and other development activities.
Data collection instruments consisted of open-ended questions to guide interviews and focus group discussions. These instruments were produced from WHO standard questionnaires, reports, and readings on HIV-positive mothers’ infant feeding experiences. The concepts included were: HIV-positive mothers’ replacement feeding experiences and their per- ceptions of these; community infant feeding culture and meaning attached to feeding practices; the influence on mothers’ choice of feeding by her family and relatives and by the health facility; and the coping strategies exclusive-replacement-feeding mothers used to manage these environmental demands. The instruments were pretested at HRH and Tilla with respon- dents who did not participate in the actual study, and modified based on the pretest results. Written consent was obtained from all of the participants. Participation was voluntary and the participants were told of their right to withdraw without giving a reason at any time and to request that their data be excluded. The rights of participants to refuse answers for a few or all interview questions were respected. Each participant was given $1.75 US for his or her time spent in the study.
There were some potential risks to the study participants. HIV-positive infant-feeding mothers who have not disclosed their status could have been rejected by their husbands, physically abused, or divorced. The community members could have breached confidentiality of information discussed in the focus group. Their participation in the study could have affected the services they receive from HRH. The nurse counselors’ job might be endan- gered for revealing actions of their health facilities that compromised the quality of infant feeding follow-up visits. These risks were discussed with the participants, as well as an explanation of how they would be minimized. To reduce these potential risks, the names of participants were coded to protect identifying information. Written commitments were obtained from the participants to respect the confidentiality of the interviews. Interviews
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76 B. A. Woldegiyorgis and J. L. Scherrer
and focus group discussions were conducted in Amharic and tape recorded. Participants were told they could speak without being tape-recorded whenever they chose. In addition, field notes recording environmental setting and verbal and nonverbal information during the interviews were taken.
Data analysis involved first transcribing the tape recordings of the inter- views and discussions. The Amharic transcripts were then translated into English and the English translations were analyzed. When the information from different data sources did not agree, the original Amharic transcripts were consulted either to reconcile contradictions or to present divergent interpretations. The data were analyzed in five steps as suggested by Ulin et al. (2002). The translated transcripts and field notes were read and reread carefully to become familiar with the text. Emerging themes were coded using informant and researcher concepts. Principal themes and subthemes were identified through data display. The most essential concepts and rela- tionships were made visible through condensation of the data. Finally, interpretations were made by identifying and explaining core meanings of the data, communicating the essential ideas of the participants, and remain- ing faithful to their perspectives. All information obtained in the study was maintained on a secure computer that was password protected.
FINDINGS
The Individual Body: Mothers and Replacement Feeding
Three themes around replacement feeding challenges were evident in the interviews with the mothers. The first theme was that replacement-feeding mothers do not get proper infant feeding counseling. Neglecting other AFASS criteria, counselors only asked mothers if they could afford to buy the replacement foods. The counseling focused on scaring mothers about the possibility of infecting their infants and favoring the choice of formula feeding. The mothers were sometimes exposed to conflicting counseling messages as noted by a mother of three:
A home-care provider advised me to exclusively breastfeed the child for 6 months. I began exclusive breastfeeding as per her advice. However, when I went to Referral Hospital, the doctor told me that the infant had been fed the virus. I was shocked and planned to immediately stop breastfeeding. In the hospital, the child spent 24 hours without having any food until the virus he had been sucking was “removed.” After all the virus is removed from his stomach, I began cow’s milk. (Selam, personal communication, March 26, 2009)
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Replacement Feeding Experiences in Ethiopia 77
The mothers were orally informed about replacement feeding but they were given no demonstration during the counseling. Fathers were not involved in infant feeding counseling because they did not accompany the mothers and their infants to the counseling room. HIV-positive mothers were not instructed on preparing for the delivery of their child, by bringing for- mula or cow’s milk and a feeding bottle to replacement feed their infants after delivery, resulting in infants waiting long hours until the replacement food was found in the town. There were no follow-up visits by HRH on how well, or even if, the replacement-feeding mothers were implementing the instructions they had been given on replacement feeding.
The second theme that evolved was on the challenges in maintaining replacement feeding that met AFASS criteria. Economics presented the major challenge. Most of the mothers began with formula, but changed to cow’s milk and then to mitin, a gruel-type of substance made from different types of grains, because that was what they could afford. Other common replace- ment foods identified by the mothers are raw milk, boiled cow’s milk, abish or fenugreek, a soup made from a local plant, and atmit, a gruel made from one kind of grain. Only one mother was able to feed her infant formula for 6 months. The others all stopped much sooner, some after only 1 week. An infant feeding counselor noted:
I don’t think mothers sustainably adhere to their feeding choice. Market situation and their income do not match. Lots of replacement-fed children are malnourished and admitted to the hospital. They get balanced diet in the hospital and recover. When these children go home, mothers cannot properly feed them and you see the same child in the therapeutic feeding center next month. There is a cycle of malnutrition. They go to hospital, get better, go home, and are malnourished and admitted to hospital again. This shows that the mother couldn’t sustainably provide replacement feeds. (Tibebu, personal communication, April 7, 2009)
Some of the reasons for this lack of sustainability include mothers who stayed at home to care for their children and could not go out to earn addi- tional income. Most of the fathers have no regular income to contribute toward purchasing replacement food. As a result, the nutrition of other fam- ily members was neglected because the family’s economic resources went for purchasing the replacement food. In addition, sustainability was threat- ened by a policy of providing mothers with infant nutritional support for only a week or a month at a time at most. A mother of triplets described her dilemma in sustaining her feeding choice:
The counselors told me to exclusively replacement-feed the infants or exclusively breastfeed them. When I and my husband examine it, this is very useful for one child. However, ours are three and neither of the
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choices was feasible for us. My breast milk will not suffice for three of them. We could not afford to buy replacement feed for them. I haven’t thought they will survive. One of them died after 2 months. I suspect it could be due to starvation. Then I was worried about the survival of the other two and feed them everything thought to be good for infants. (Tarikua, personal communication, April 3, 2009)
Most of the study mothers overcame these challenges in their replacement feeding by shifting the nutritional support that they received for themselves from a nongovernmental organization (NGO) to their infants, which resulted in compromising their own health. They also coped by cutting back family expenditures, creating additional income sources, and immediately taking infants to health institutions whenever they became ill.
The third theme that became evident was the mothers’ fears of replace- ment feeding their infants. They have doubts about the nutritional adequacy of their replacement feeding method. Most of the study mothers (5/7) feared the possibility that other nursing mothers who could breastfeed their infants would be HIV-positive, thus exposing their infants to the virus. Almost all mothers (6/7) feared that they did not show love to their infants because they replacement fed rather than breastfed them. A mother of one child noted:
I think I missed a lot due to replacement feeding. I began to worry just as I got pregnant. One day I was exploring my breast and milk began to flow. When I thought that I couldn’t breastfeed my child, I wept for the whole night. I feel that my child would not love me because I have not breastfed her. I often ask, “How do I make her know I love her? How do I express my love to my child?” Though I devoted my full time to care for her, I still feel unsatisfied. I don’t think I shared my full love, motherly love. I feel that my infant has missed something from me, and I missed something from my infant. I feel discomfort when I see breastfeeding mothers—a kind of jealously. I want to compensate that gap by cradling her for long, keeping her clean, and being available around her. But still, I don’t think I have expressed my love to my child. (Beyenech, personal communication, March 25, 2009)
Almost all mothers (6/7) worried about the possibility of subjecting their infants to disease such as diarrhea, malnutrition, and constipation because of replacement feeding. Even though they had these worries, they were happy about their decision to replacement feed to protect their infants from HIV infections. Mothers overcame the fears related to replacement feed- ing in many ways. They dealt with fears related to sanitation by preparing, storing, and feeding their infants themselves. They shifted resources that were available to feeding their infants. Some borrowed money when they
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Replacement Feeding Experiences in Ethiopia 79
were in need and paid back when they were able. They leaned on their reli- gious beliefs and sought support from family members and their association. An infant feeding counselor discussed Tilla’s program to encourage planned pregnancies:
The association’s plan is to minimize the number of women who say they might have got pregnant because their periods have not come. We want them to have planned pregnancy. In reality; however, this is not happening. They often get pregnancy in casual relationship. This unplanned pregnancy leads them to poor adherence. When the child cries, the mother gives infant her breast milk to soothe the child. When the child cries bitterly, it is difficult to think about the virus that is present in the breast milk. We first think to quiet the child. (Tibebu, personal communication, April 7, 2009)
The Social Body: Community Infant Feeding Culture
The customary infant feeding practice in the community is prolonged breast- feeding and early introduction of other foods such as cow’s milk or atmit. Infants also were encouraged to lick fresh butter to build up their strength. Replacement feeding in such a breastfeeding culture exposes the mother’s HIV status to her community. An infant feeding counselor describes how this happens:
Replacement feeding in breastfeeding culture hints the mothers’ HIV status. They ask her why she is not breastfeeding her infant. This is because HIV transmission through breastfeeding is widely disseminated. The community also knows that HIV-positive mothers are often advised to replacement feed their infants. As a result, they immediately con- clude that the mother is HIV-positive. Unless she disclosed her status, the practice of replacement feeding in breastfeeding community poses many challenges to the mother. (Woinhareg, personal communication, April 9, 2009)
Infants are fed abish in early infancy. It is the most common infant food identified by all mothers. They either bottle-feed infants or feed them from their hands to get them full. The community expects mothers to feed their infants both abish and breast milk. Traditional medications that are common in the town are also used by replacement-feeding mothers to heal some infant diseases. Among these medications are komomela, which is believed to wash infants’ intestines; fiancho, which is believed to heal the incompatibility between children’s bodies and cow’s milk; and qacha, which is believed to heal the evil eye. Other grains, cooked with water and then fed with a spoon or finger to the newborn, such as amessa, tena’adam, anamro
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and extracts of cooked rue, are used for prelacteal feeding. The community influences these mothers to use such foods that could compromise the health of replacement fed infants.
All mothers reported that the community was aware that HIV could be transmitted through breastfeeding. The community expectation was that HIV-positive mothers choose replacement feeding for their infants even if AFASS criteria are not met. Consequently, two study mothers stopped breast- feeding after a few days. A mother who chose formula feeding for her infant noted:
The community expects HIV-positive mothers to replacement feed their infants. I don’t know why some mothers breastfeed. The community opposes breastfeeding by HIV-positive mothers. They say, “Since these mothers are not compassionate for their own infants, they will not be compassionate for us.” Our neighbors tell me how the community dis- likes breastfeeding HIV-positive mothers. They think she is killing the poor child. (Wosene, personal communication, March 27, 2009)
The meaning attached to the practice of prolonged breastfeeding is that it makes infants stronger, healthier, and faster in development, and should be considered the only infant food. All of the mothers reported that they feared their replacement-fed children are denied these advantages. The community attached negative meanings to replacement feeding practices, and identi- fied mothers who used replacement feeding as being irresponsible. Such negative meanings include: mother’s opposition to the ideals of good moth- erhood, dislike of the child, desire to kill the child, selfishness for their own health, greater concern for their body shape, engagement in extramar- ital affairs, desire for adultery, and/or desire to maintain breast beauty. The community accepted replacement feeding when the mother revealed her HIV-positive status, had breast disease, or was not allowed to breastfeed by doctors. In these cases, mothers were seen as sacrificing an essential func- tion of motherhood for the welfare of their infants. Replacement-feeding mothers developed several ways to cope with the influences of the social body. They focused on the health gains of their infants while disclosing their HIV-positive status to the community. They openly rejected some harmful infant feeding practices and became selective in the use of traditional prac- tices. Finally, they explained the reason behind their not breastfeeding, and corrected misconceptions.
The Body Politic: Persons Around the Mother and Health Care Systems
Especially during their confinement period right after giving birth, replacement-feeding mothers faced pressure to breastfeed from their
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Replacement Feeding Experiences in Ethiopia 81
husbands, mothers, and mother-in-laws. Friends and neighbors also pres- sured them to breastfeed, although not as intensely as their immediate family members pressured them. Two out of the seven mothers interviewed reported no such pressures. A mother of four children commented on the pressure to breastfeed:
Some of my friends and neighbors pressure me to breastfeed. One of my friends saw my financial crisis and asked me to breastfeed. She knows that my husband is laid off from job and she sees how I am overwhelmed with the problem. I have to pay for milk rental, house rent, sending chil- dren to school, and the household food consumption with the meager salary. She tells me that I wouldn’t have faced such stress if I had breast- fed my child. Though the advice is from good will, it often disturbs me. Then I told her not to come with such proposal and disturb me that way. (Wosene, personal communication, March 27, 2009)
All mothers reported that health care counselors ask whether they can afford to buy replacement foods, and sustain their choice, as a precondition to practicing replacement feeding. If they could not afford replacement food, they were counseled to exclusively breastfeed for 6 months. The counselors proposed infant formula as the most suitable infant food, followed by cow’s milk. The majority of the mothers (5/7) started replacement feeding without being able to afford it because of their fear of HIV transmission through breastfeeding.
Because health care counselors do not demonstrate formula prepa- ration, replacement-feeding mothers prepare it either by reading the instructions on the container or by trial and error. All counselors indicated that there is no replacement-feeding support to needy mothers from the hospital, nor is there a system of referring them to organizations providing support. Nonetheless, they believe access to replacement feeding will solve most of the problems, as noted by one counselor, who compared formula to khat and replacement feeding to ketema:
If formula is affordable and accessible, I think the major problem is solved. In the absence of formula, teaching about it is meaningless. The big challenge is making it available. If it is available, the rest things are easier. If someone invites you [to chew] khat (somewhat expensive leaves with a mild narcotic quality) it is easier for you to come with ketema (sedge, a cheap kind of grass) which is to be scattered on the floor to make the khat chewing ceremony attractive. Ten cents ketema is easier. If replacement feeds are made available, mothers’ responsibly respond to it. I often saw them want to be committed to their infants. (Tibebu, personal communication, April 7, 2009)
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The majority of the mothers (6/7) introduced complimentary foods at 6 months, as instructed by the counselors. However, most counselors (3/4) believed that few mothers actually introduce complimentary feeding at 6 months. Although counselors advised mothers to feed infants with five or more meals per day, mothers could not do this because of the cost. Counselors tell replacement-feeding mothers to give infants diversified diets consisting of at least five kinds of foods to keep them healthy and growing well. However, economic problems have severely limited their ability to do so. Two counselors said these mothers can provide infants with this dietary diversity and denied that it would be costly.
The interviewed replacement-feeding mothers noted that they coped with the pressures from the body politic through several avenues. They disclosed their HIV- positive status and involved their husbands in infant- feeding counseling. One replacement-feeding mother indicated that she gave socially acceptable reasons for replacement feeding, and one relied on God as well as disclosure. They generally did their best to comply with counselors’ instructions on replacement feeding despite the challenges that confronted them. In addition, HIV-positive mothers clarified misconceptions, and became selective about following the advice they received. Finally, they participated in income-generating activities to become self-sufficient, and sought peer advice and legal support from their association.
DISCUSSION
In reflecting on the findings as related to the individual body taken from the framework, replacement-feeding mothers received inadequate counseling on infant feeding. Although WHO (2010) recommended that prioritization of prevention of HIV transmission should be balanced with meeting the nutri- tional requirements and protection of infants against non-HIV morbidity and mortality, counselors’ bias of favoring replacement feeding and mothers’ fear of infecting their children through breastfeeding strongly influence mothers’ choice of replacement feeding. These mothers were also exposed to con- flicting messages from health care workers and home-based care providers, and this further eroded their confidence in breastfeeding.
Results indicate that there is no proper AFASS assessment, a finding sup- ported by Koricho (2008). Even so, nurse counselors promote replacement feeding using WHO 2001 guidelines. However, new guidelines (WHO, 2010) note that with current knowledge and technology, most cases of postnatal mother-to-child-transmission of HIV are preventable through antiretroviral (ARV) drugs and modifications in infant feeding practices As a result, exclusive breastfeeding becomes the recommended first choice.
The findings suggest that most of the mothers face a number of chal- lenges in implementing their replacement feeding intentions. Because most
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Replacement Feeding Experiences in Ethiopia 83
of the mothers did not make prearrangements for their delivery day, they found it difficult in the labor ward both to soothe their infants who were cry- ing for breast milk and to reassure neighbors who were pressuring them to breastfeed. The prohibitive cost of formula and its preparation, and the dif- ficulty of modifying cow’s milk and maintaining nutritional adequacy with gruel were problematic for these mothers. The hospital provided no free or subsidized formula to needy mothers, nor did it refer them to support organizations. Consequently, infants were at high risk for malnutrition and serious illnesses. Problems related to implementing replacement feeding in this study are similar to those found in other studies (Koniz-Booher et al., 2004; Koricho, 2008; Leshabari, 2007). The WHO 2001guidelines thus pre- sented requirements that could not be met economically or socially, even though they succeeded in bringing about a social ideal of what should be achieved. As a result, the individual body came into conflict with the social body and the body politic, resulting in half measures (mixed feeding) that only made matters worse (Moland et al., 2010).
Most of the study mothers overcame these challenges in their replace- ment feeding by shifting the nutritional support given to them by NGOs to their infants, thus compromising their own health, cutting back family expen- ditures, creating additional income sources, and immediately taking infants to health institutions. Mothers who want to remain firm in their decision to replacement-feed did not get support and follow up from the health care system. Counselors had no feedback on how the mothers implemented their feeding decisions unless the infants were sick and brought to the hospital. There was no formula support or referral of mothers to supporting organiza- tions. Contrary to these findings, other studies show that mothers generally received ongoing advice and support on their practice of infant feeding (Koniz-Booher et al., 2004; Matovu et al., 2002; WHO, 2010). Guidelines for providing support through grandmothers and men in the families of HIV-positive nursing mothers have not been provided in any of the WHO publications (Aubel, 2011). This oversight misses an important element in ensuring that infants are nutritionally and healthily fed. Mothers have fears surrounding their replacement feeding. They are worried about the sustain- ability of the foods, their nutritional adequacy, loss of emotional bonds, and the subsequent exposure of their infants to childhood illnesses. Such moth- ers’ concerns are reflected in other studies, as well (Koricho, 2008; WHO, 2003). Study mothers have no fear of disclosing their status and feeding method. They received the courage to disclose from the counseling in their associations, peer support, participation in trainings and workshops, and securing some income. This is in contrast to other studies that showed that HIV-positive women fear disclosure due to subsequent negative responses (Leshabari, 2007; Njunga, 2008).
In reflecting on the findings as related to the social body taken from the framework, the infant feeding culture is prolonged breastfeeding for as
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84 B. A. Woldegiyorgis and J. L. Scherrer
long as 3 years with early introduction of supplements. HIV-positive moth- ers managed the social pressure of this customary breastfeeding practice by disclosing their HIV positive status and making it their priority to have an HIV-negative child. This prioritizing of the infant’s health agrees with what Nyblade et al. (2000) found in Botswana. However, it disagrees with more recent WHO (2010) guidelines and the results of more recent studies that indicate prolonged exclusive breastfeeding enhances the health of the infant, even when the mother is HIV-positive (Aubel, 2011; Moland et al., 2010).
The findings suggested that replacement-feeding mothers were dis- turbed by the social meanings attached to breastfeeding, namely that breastfed children will be healthier and stronger, have faster development, and have brighter minds; nonbreastfed children would not have the advan- tage of breast milk and, consequently, would be subjected to diseases. Leshabari (2007), Koricho (2008) and Sevelius (2011) found similar atti- tudes. The findings suggested that the study mothers were selective in their choices of traditional medications even though the community thought that all traditional medications were better cures, have no side effects, and are cheaper and easily accessible. This finding differs from Njunga (2008), prob- ably reflecting the study mothers’ greater access to trainings, workshops, and other information regarding the use of medications. Even so, the use of medications amounted to mixed feeding of the infants. Mixed feeding enhances the possibility of HIV infection of the infants, because their imma- ture stomachs cannot handle the food being used. This results in lesions or sores in the lining of their stomachs, which present ideal places for HIV infection (Moland et al., 2010).
In reflecting on the findings as related to the body politic taken from the framework, most of the replacement-feeding mothers are trapped between two competing control efforts. In their home environment, their feeding method is under the surveillance of their partners, their mothers, mothers- in-law, and friends. Outside of the home environment, there are the dos and don’ts of the hospital staff attempting to conform to the WHO 2001 infant feeding recommendations. HIV-positive mothers reduce the pres- sure in the home environment through disclosure, a finding that supports Mulugeta’s (2008) research. However, they could not comply with the con- ditions of AFASS largely due to their economic situation. These control efforts of mothers’ infant feeding practices are consistent with Aubel (2011). However, these social pressures are usually viewed to be sources of prob- lems for the HIV-positive mother in making her decisions about how to feed her infant. The individual body then is in conflict with the social body. Because the pressures from the social body do not always conform to the recommendations of the body politic, all three bodies then conflict with each other. What should be a supportive environment becomes a conflictive, nonsupportive one.
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Replacement Feeding Experiences in Ethiopia 85
IMPLICATIONS FOR SOCIAL WORK AND SOCIAL DEVLOPMENT
The Three Bodies Model of Scheper-Hughes and Lock (1987) illustrates the interaction between the individual, family, community, social, and cul- tural influences. Although the bodies have definite boundaries, they come together in influencing decisions people make that affect their welfare and that of those who depend upon them. Social workers who work with clients at these decision points must take into account this interaction among the bodies, and their impact on the decision, and work with all three to bring them into harmony with each other.
As this study illustrates, social workers cannot just focus on the individ- ual body in providing services because the influence of the other two bodies could negate all social work progress with their clients. In the case of HIV- positive mothers of newborns, these three bodies come closer into harmony with each other when mothers are able to disclose their HIV-positive status openly. Only the health care system of the body politic remains nonaligned with the rest of the body politic, all of the social body, and all of the individ- ual body. If the health care system better harmonized with the other bodies, ARVs would be available to the HIV-positive mothers and, where not avail- able, AFASS criteria would be seriously considered before recommending the mothers replacement feed their infants. Although both the individual bodies and the social body attempted to compensate for the inadequacies of the body politic, they could not fully achieve that goal. As a result, infants remained unacceptably exposed to HIV infection and/or to malnutrition or disease.
Both the mothers and the key informants seemed aware of the necessity for the harmonious interactions between the three bodies. The interviews with the counselors revealed their lack of awareness of the need for the three bodies to work together to address this particular issue. Although a lack of resources was a factor, the use of outdated WHO guidelines and the failure to fully explore whether AFASS criteria were present before recommending replacement feeding had the effect of enhancing the risks to the infants of infection, starvation and even death.
Non-Ethiopian funders of HIV/AIDS programs should remember that it would not be enough to simply provide ARVs to HIV-positive mothers with infants. They also need to address the attitudes, beliefs, and practices of family and community members that will affect the efficacy of appropriately using the drugs. They need to ensure that counselors are not only trained in the administration of the drug, but also in working with the cultural beliefs and social pressures that HIV-positive mother’s experience. It is also impor- tant to remember that, although self-disclosure of HIV-positive status had a positive effect for the women in this study, such would not necessarily be the case in other communities, cultures, or societies. Funders and managers of HIV/AIDS programs should have direct and intimate knowledge of the
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86 B. A. Woldegiyorgis and J. L. Scherrer
social and cultural context in which the recipients of their services live and adjust the services accordingly.
CONCLUSION
This study used the Three Bodies Model to examine how individual, sociocultural, familial, and medical factors interacted to affect decisions HIV- positive mothers made on whether to breastfeed or replacement feed their infants. It found that self-disclosure of one’s positive HIV status had the result of realigning social, cultural, community, family, and individual influ- ences from one of being critical of the mother to one of being supportive of her efforts to ensure the safety of her infant. It also found that breastfeeding counselors were using outdated guidelines that had been found, through research, to actually be harmful to the infant. The recommendations from these counselors hence often ran counter to the beliefs of the family and community surrounding the HIV-positive mother, leading her to engage in practices that were more threatening to the well-being of her infant. Thus, the conflict within the social body led to harmful actions on the part of the individual body. The importance of working with all three bodies simultane- ously to achieve better health for infants born to HIV-positive mothers was emphasized along with recommendations on ways to achieve that.
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