Responses of HIV-Positive Mothers
to Infant Feeding Counselling as Part of the
KwaZulu-Natal Provincial Prevention of Mother to Child
Transmission of HIV Programme in South Africa
Hanna Eneroth
20-Point Degree Project, Master of Science in Nutrition,
Stockholm University and the Department of Medical Nutrition,
Karolinska Institute, Stockholm, Sweden
Research Advisor: Ted Greiner
Department of Women’s and Children’s Health
Section for International Maternal and Child Health
Uppsala University
Uppsala, Sweden, March 2004
Contents
List of Tables
3
Abstract
3
Background
Breast-feeding and child health
Post-natal Mother-to-Child-Transmission of HIV
Current recommendations on HIV and infant feeding
The South African PMTCT programme in KwaZulu-Natal
Programmatic experience
4
4
4
5
6
6
Aim and Objectives
8
Material and Methods
Study sites
Study Population and inclusion criteria
Recruitment, consent and confidentiality
Data collection tools
Sample size
Data entry and statistical analysis
8
8
9
9
9
10
10
Results
General characteristics
Use and Supply of free infant formula
Early and rapid cessation of breast-feeding
Responses to formula feeding
Infant Feeding Counselling
10
10
11
13
14
14
Discussion
Methodological issues
Use and Supply of free infant formula
Early and rapid cessation of breast-feeding
Responses to formula feeding
Infant Feeding Counselling
15
15
16
17
17
17
Conclusion
18
Acknowledgements
18
References
19
Appendix
Questionnaire for Mothers and Caregivers
Questionnaire for Infant Feeding Counsellors
Self-Assessment Questionnaire for Counsellors
21
21
33
40
2
List of tables
Table1. Participation of mothers
Table 2 General characteristics of mothers and infants
Table 3 Socioeconomic characteristics of mothers
Table 4 Mothers’ responses on how free formula is used
Table 5 Mothers who have run out of formula sometime
Table 6 Mothers’ reasons for stopping breast feeding early
Table 7 Counsellors’ confidence in different types of counselling
10
10
11
11
12
13
15
Abstract
Background: The KwaZulu-Natal PMTCT programme provides all HIV-infected mothers
with free infant formula for 6 months of the baby’s life, to be handed out either for the first 6
months of life or after a period of exclusive breastfeeding. If the formula milk provided by the
programme is used for other purposes than feeding the index child, as findings from other
nutritional support programmes suggest may happen, there is a risk that the index child’s
nutritional needs are not fulfilled or that it is also breastfed in order to fulfil those needs. It has
been reported that mixed feeding i.e. with both formula and breast milk increases the risk for
MTCT of HIV. For women who initiate breastfeeding, family expectations and breast health
difficulties complicate the process of stopping breastfeeding rapidly. Although early cessation
of breastfeeding is advocated, experiences of women who choose this practice have not been
well documented.
Objectives: This descriptive study focuses on how mothers in the South African National
program for prevention of mother-to child transmission of HIV (PMTCT) a) use commercial
infant formula provided for free as a part of the programme and b) stop breastfeeding early
and rapidly as strategies to prevent vertical transmission of HIV.
Material and Methods: Mothers on the programme were interviewed using a semi-structured
questionnaire. Semi-structured interviews and a self-completion questionnaire were used to
obtain information from counsellors employed by the program.
Results: Formula provided by the programme is sometimes used for other purposes. Supply
of formula to all PMTCT clinics is not ensured by the programme. Even if mothers are
supplied with formula, they run out of formula at home. Women in this study population
experienced difficulties with breasts and with their babies when they stopped breast-feeding
early and rapidly.
Conclusion: Replacement feeding is in this population not necessarily acceptable, affordable
and sustainable simply because formula is provided for free. Early cessation is being
implemented in the programme, but research to determine if it is feasible and safe is needed.
3
Background
The objectives of this study were developed in cooperation with the KwaZulu-Natal PMTCT
programme team. This degree project was done as a Minor Field Study with financial support
from Swedish International Development Cooperation Agency through International Maternal
and Child Health, Uppsala University.
Breast-feeding and child health
There are numerous advantages of breastfeeding compared to all other types of infant feeding.
Breast milk contains all the nutrients and fluid an infant needs up to 6 months. Breast milk
contains antibodies from the mother that help protect the child from infections such as
diarrhoea and acute respiratory infections. The risk of death from infectious diseases in an
infant never breastfed was six-fold in the first 2 months of life in a pooled meta-analysis
(WHO Collaborative Team, 2000). Breastfeeding is also by far the most economic way of
feeding an infant. If practiced exclusively and on demand breastfeeding delays onset of
fertility after a pregnancy and thus contributes to birth spacing. In regions where malnutrition,
diarrhoeal diseases and respiratory infections account for most of the cases of infant death,
breast-feeding is the obvious infant feeding method to promote.
Post-natal Mother-to-Child-Transmission of HIV
The AIDS epidemic has made infant feeding a complex issue, where the risk of malnutrition
and infectious diseases has to be weighed against the risk of mother-to child transmission
(MTCT) of HIV. MTCT is the transmission of HIV from an infected woman to her child that
can occur during pregnancy, delivery or breast-feeding. In a meta-analysis of studies where
overall transmission rates between breast-fed and non-breast-fed babies were compared, the
risk of HIV-transmission via breast-feeding was quantified to 14 % (95 % CI 7-22 %)(Dunn
& Newell, 1992). More recent studies also suggest a 14% breastfeeding transmission for 24
months of breastfeeding. (Nduati et al., 2000), (Coutsoudis et al., 2001).
High viral load, as for example in newly infected individuals or in individuals with AIDS,
increases the risk of post-natal MTCT (John et al., 2001). Viral load in breast milk varies
between individual women, with time of lactation and between the breasts of an individual
(Ruff et al., 1994), (Willumsen et al., 2001). Other factors that increase the risk of
transmission of HIV via breast milk are breast conditions such as mastitis and cracked nipples
(John et al., 2001). Even sub clinical mastitis, defined as raised Na/K levels in breast milk in
the absence of clinical symptoms can increase the viral load (Semba et al., 1999), (Willumsen
et al., 2000). Oral thrush (Embree et al., 2000) or damaged intestinal epithelia in the infant are
also risk factors for post-natal MTCT since transmission is thought to occur by cell-to cell
contact with milk leukocytes and infant oral- or gastro intestinal epithelial cells. Disruptions
in the intestinal mucosa of the infant facilitate infection of the lymphocytes in the sub mucosa
(Rollins, 2003).
Most studies on post-natal MTCT have not taken the pattern of breast-feeding into account.
Two studies have used the WHO definition of exclusive breastfeeding (nothing else but breast
milk). One of them showed a non significant lower risk for transmission if the baby was
exclusively breast-fed (Tess et al., 1998). The other study was of HIV-positive women from
4
Durban who took part in a vitamin A randomized controlled trial. The women received
counselling and decided whether to breast-feed or not. Those who chose breast-feeding were
encouraged to exclusively breast-feed. The probability of HIV-infection in exclusively breastfed babies, 19.4 % (n=118), was statistically no different than the probability of HIV-infection
in never breast fed babies, 19.4 % (n=157), up to 6 months. The probability of HIV-infection
in the group of mixed breast fed babies, 26.1 % (n=276), was significantly higher (Coutsoudis
et al., 2001). The reasons behind this are not yet understood. Possible explanations include
that feeding with other foods than breast milk increases the gut permeability making it easier
for the HIV-virus to enter the gut mucosa of the infant. Introduction of other foods than breast
milk to the infant might also change the gut flora of the infant, modifying gut immune
responses (Rollins, 2003). Another possible explanation is that breast milk left in the breast
(as when the baby’s energy needs are met by other foods) increases the risk of sub clinical and
clinical mastitis.
Most babies born to HIV-infected women do not get infected, even if they are breast-fed
(Dabis et al., 1993). Protective factors in the breast milk and the large variations in viral load
in breast milk may account for this.
Current recommendations on HIV and infant feeding
For HIV-negative women and those who do not know their status, WHO recommends
exclusive breast-feeding to children up to 6 months and continued breast-feeding with
appropriate complimentary feeding up to 2 years or more. (WHO et al., 1998b)
HIV-infected mothers in industrialised countries are advised to not breast-feed, but in lowincome countries the responsibility of making an informed choice on feeding practice is on
the woman herself. The WHO/UNICEF/UNAIDS policy (WHO et al., 1997) states that all
HIV-positive mothers should be counselled about the infant feeding options, their risks and
benefits. Every woman is entitled to special guidance in choosing the most suitable option for
her and to be supported in implementing the feeding option of her choice.
UNAIDS/UNICEF/WHO recommends avoidance of breast-feeding by HIV-positive women
when replacement feeding is acceptable, affordable, feasible, sustainable and safe.
If these criteria cannot be met, exclusive breast-feeding is recommended for the first months
of life. As soon as replacement feeding is considered to be acceptable and feasible in the local
community, affordable and sustainable in terms of supply to the individual woman and safe in
terms of additional risk for malnutrition and infections other than HIV, the HIV-positive
woman is recommended to stop breast-feeding. When an HIV-positive woman has chosen to
breast-feed, she should be supported in stopping breast-feeding early and rapidly. She should
be provided with specific guidance to reduce harmful nutritional and psychological effects
and to maintain breast health when doing this.
HIV-positive mothers who choose not to breast-feed should be provided with special
guidance and support during the child’s first two years to ensure safe replacement feeding.
Programmes for the prevention of MTCT (PMTCT) are recommended to include measures to
improve conditions that make replacement feeding safer. Locally, assessments should be done
to identify what options are acceptable, feasible, affordable, sustainable and safe in that
community. Information and education on PMTCT should be given to the general public,
affected communities and affected families.
5
The infant feeding options suggested for less than 6 month old infants with HIV-infected
mothers are breast milk banks, commercial infant formula, home modified animal milk,
exclusive breastfeeding, early cessation of breastfeeding, expressing and heat-treating breast
milk or wet nursing by an HIV-negative woman (WHO et al., 1998a).
The South African PMTCT programme in KwaZulu-Natal
South Africa is seriously affected by the AIDS epidemic. The HIV prevalence among
pregnant women was 24.3 % in 2000 (UNAIDS/WHO, 2002). In South Africa is there are
enormous differences in living standards among its 44 million people. In 2000 the South
African government launched a programme for prevention of Mother to Child Transmission
of HIV. A pilot programme was set up at two clinics in each of the nine provinces. In most
provinces the pilot programme clinics have now become established PMTCT clinics, with
more clinics to follow with rollout of the programme.
KwaZulu-Natal (KZN) is situated on the north-eastern coast of South Africa. The province is
inhabited by 9.4 million people. The Ethekwini municipality hosts the biggest city, Durban,
with a population of 3.1 million people. KZN is a largely rural area however, and the second
poorest province in the country, with the second highest unemployment rate. According to the
2000 antenatal survey, KZN had the highest rate of HIV-infected pregnant women in the
country, 36.2 %(UNAIDS/WHO, 2002).
The PMTCT program includes voluntary counselling and testing (VCT) of women at
antenatal visits, a short-course of the antiretroviral drug Nevirapine to those who test positive,
special efforts to reduce unnecessary interventions during delivery and a dose of Nevirapine
to the baby within 48 hours postpartum. Counselling on infant feeding options takes place
during pregnancy, with follow up and support of the chosen feeding practice after delivery.
The counselling at the PMTCT sites is done by lay counsellors. VCT counsellors attend a
course held by the programme or by an NGO. Infant feeding counsellors in KZN have
attended a one week-course on MTCT, breast-feeding positioning, infant feeding options,
breast conditions, formula feeding preparation and confidence building in mothers. The
materials used in the education are “Breast-feeding counselling: A training course” and “HIV
and infant feeding” (UNAIDS/UNICEF/WHO, 2000).
HIV-infected mothers who choose to formula feed are supplied with free commercial infant
formula for 6 months of the baby’s life as an effort to make exclusive formula feeding
possible. The formula is supplied to the mother either for the first 6 months of the infant’s life
or after a period of exclusive breast-feeding. The PMTCT clinics hand out formula to the
mother every 6th week on specific dates. The date to collect formula is often a date when the
caregiver can also see the doctor or infant-feeding counsellor for follow-up counselling. The
formula used is Nan Pelargon, a brand that is readily available on the market and has a sour
taste because of the additives added to improve digestibility of the formula.
Programmatic experience
Mixed feeding is the norm in South Africa. A study of infant feeding practices in a rural area
of KZN showed that 50 % of the infants were given something else in addition to breast milk
6
in the first 48 hours of life. Only 6 % of the infants were exclusively breastfed continuously
up to 16 weeks. (Bland et al., 2002).
KZN has a tradition of breast-feeding promotion with a strong connection to the University of
Natal in Durban. Staffs at Baby Friendly Hospitals have in a short time had to implement a
policy that could be seen as undermining the universal message of breast feeding that these
hospitals have represented. Early and abrupt cessation of breast-feeding is a difficult message
to communicate since weaning is a gradual process that usually ends later than 3-6 months. A
review put together by a U.S NGO named SARA describes the possible negative effects on
the mother and child that abrupt cessation of breast feeding may lead to (Piwoz et al., 2001).
In a study of 47 HIV-infected women who were counselled to stop breastfeeding abruptly at 6
months in Kampala, Uganda, 53% had engorged painful breasts with fever (Bakaki, 2002).
The policy of supplying HIV-positive mothers with free formula has been criticized for
contributing to higher rates of mortality and morbidity in a setting with poor socio-economic
resources (Coutsoudis et al., 2002) Instead of promoting exclusive replacement feeding, free
formula may encourage mixed feeding. The distribution of formula by doctors and nurses
may be seen as an approval of the product and of artificial feeding. There are also additional,
hidden costs for the mother who chooses to formula feed. She has to buy fuel and sterilizing
equipment to be able to formula feed safely. After reviewing the experiences of provision of
free formula in the UNICEF supported PMTCT programmes, UNICEF decided in 2002 to
end procurement and distribution of free formula to countries where such support have been
part of the PMTCT programme (deWagt, 2003).
Counselling is one of the cornerstones of PMTCT. In order to assist the HIV-positive mother
make an informed choice, the counsellor must take into account each individual mother’s
household situation. The counsellor has to explain infant feeding options clearly and what
kind of resources they require. A study from Khayelitsha, a township outside Cape Town
where one of the earliest PMTCT programmes was implemented, found a lack of basic
knowledge among counsellors involved in PMTCT counselling (Chopra et al., 2002).
Mothers were not informed about risks of not breast-feeding and were advised not to breastfeed without assessing the individual woman’s circumstances. Experiences from the UNsupported pilot PMTCT programs initiated 1999-2000 showed that counsellors only presented
the options breast-feeding and commercial formula and often promoted only one of those
feeding options. At sites where formula was provided for free, formula was the most common
choice (Labbok, 2002). An interim report from the South African pilot sites recognizes the
high work load of counsellors and nurses as a major constraint in implementing PMTCT
programs(McCoy, 2002).
Lack of skilful counselling may have detrimental consequences not only for individual
women and their children, but for the population as a whole if women with unknown status
adopt the counsellors’ simplistic message of avoidance of breast-feeding. Spill over effect is
the term for when formula is given to other children in the family than the child that the
formula was recommended for, when formula is sold off to other people or when a
programme influences the non-targeted population. One example is when mothers say to
family and friends that the reason for not breast-feeding is that they have breast health
problems as found in Khayelitsha (Chopra et al., 2002). Health professionals may indirectly
influence the rest of the population to think that breast-feeding is difficult and possible to
implement successfully only for a few. In Botswana, HIV-negative women at PMTCT sites
7
were found to exclusively breast-feed at a lower rate than uninfected women at non-PMTCT
sites, suggesting a spillover effect (Luo, 2002).
Aim and Objectives
The aim of the study was to describe infant feeding practices among HIV-infected women
who have been counselled as part of the KwaZulu-Natal Provincial PMTCT programme. The
two specific objectives were:
a. To explore how commercial infant formula, supplied free as part of the
PMTCT programme, is received and used at home.
b. To report practices and experiences regarding early and rapid cessation of
breastfeeding as a strategy to prevent vertical transmission of HIV.
Material and Methods
This descriptive study explored infant feeding practices of mothers on the KZN PMTCT
program by using semi-structured interviews with mothers on the program. Semi-structured
interviews and self-completion questionnaires were used to obtain information from
counsellors employed by the program. Data were collected at PMTCT clinics both in urban
and rural areas in and around Durban during September-November 2003. The study was
approved by the research ethics committees of Uppsala University, Uppsala, Sweden and of
University of Natal, Durban, South Africa.
Study sites
Umlazi is a large formal and informal settlement in Durban. Prince Mshiyeni Memorial
Hospital was one of the PMTCT pilot sites in KZN. Interviews with mothers were conducted
there, at Section D clinic and at the Good Start Infant feeding study clinic. Interviews with
counsellors were done at Prince Mshiyeni Memorial Hospital PMTCT clinic (n=3) and
Section D clinic (n=2).
Tugela Ferry is a small town in a deep rural area 2.5 hour’s drive from Durban. PMTCT
activities started at Church of Scotland Hospital (COSH) in 2000 and rolled out to
surrounding clinics in 2002. Interviews with mothers were done at COSH and at home visits.
Interviews with counsellors were conducted at COSH (n=3) and the following surrounding
clinics that provided counselling but sent mothers to COSH to collect formula: Ethembeni
(n=2), Mbangweni (n=1), Mhlangana(n=1), Cwaka (n=1) and Gunjana (n=1). The aim was to
have only these two sites but due to problems with enrolment a third site in an area with both
urban and rural population was added. Port Shepstone is a small coastal town 1 hour’s drive
south of Durban. Interviews with mothers took place at Port Shepstone Hospital and all
interviewed mothers came from rural areas. Interviews with counsellors took place at Port
Shepstone Hospital (n=2), Murchison Hospital (n=2) and the surrounding clinics Assisi (n=2)
and Gamalakhe (n=2).
8
The self-completion questionnaire was distributed at a refresher course held in Stanger for
counsellors in the largely rural Ilembe district.
Study Population and inclusion criteria
Mothers and other caretakers who had been counselled on infant feeding practices as part of
the KZN PMTCT programme and who attended one of the study site clinics for continuing
support were included in the study. The sample child was the mother’s youngest child.
Counsellors, who had been trained in infant feeding counselling, working at the sampled sites
when the investigator was present, were asked to participate. All counsellors who attended a
PMTCT refresher-training course were asked to fill in a self-assessment questionnaire.
Recruitment, consent and confidentiality
Women were asked if they were willing to participate by the counsellor at the clinic. Only
mothers or other caretakers willing to be identified as part of the programme were approached
by the investigator and asked for consent to participate in the study. The counsellors were
approached by the investigator and asked for oral consent to participate in the study. Written
information in Zulu was provided in the informed consent document and on an information
sheet handed out to all respondents. The interviews were translated to Zulu when the
respondent so wished. In Umlazi, and Tugela Ferry a number of interviews were arranged, i.e.
women were asked to come to the clinic on a specific date. All the infant feeding counsellors
at each site were asked to participate in interviews for counsellors. All PMTCT and VCT
counsellors attending the training course were asked to complete the self-assessment
questionnaire. The interviews were conducted in a separate room at the clinic or hospital or in
a few cases, in the respondent’s home. The respondent’s name never occurred on any papers
since only oral consent was used. All data were kept in confidentiality by the investigator.
Data collection tools
Data on socio-economic status, on the supply and use of free formula, and on how others use
formula use were obtained through semi-structured interviews with mothers. Questions about
timing and methods of early cessation of breast-feeding were asked to women who had
experience of this method. The semi-structured questionnaire used in the interviews with
infant feeding counsellors explored the same fields as the interviews with mothers. The infant
feeding counsellors were also asked how confident they feel about counselling HIV-positive
mothers on different aspects of infant feeding and what advice they give to HIV-positive
mothers who stop breast-feeding early and quickly. In addition, a self-assessment
questionnaire on knowledge of infant feeding options and confidence in counselling about
these options was distributed to infant feeding counsellors who attended a PMTCT refreshertraining course.
The questionnaire for mothers was pre tested on five women attending a clinic at King
Edward XIII hospital in Durban. The self-assessment questionnaire was based on UNICEF
tools for evaluation of PMTCT sites, previously used and evaluated in several countries
(UNAIDS, 2003).
9
Sample size
The intention was to ask thirty women at each site to participate in the interviews. Experience
from other studies on infant feeding suggested that thirty women would provide
representative information.
Data entry and statistical analysis
The data was entered into Epi Info 2002 and analysed using Statistical Package of Social
Sciences (SPSS).
Results
The results will be presented thematically, with data obtained from interviews with
mothers/caregivers, interviews with infant feeding counsellors and self-assessment of
counsellors presented separately under each heading.
General characteristics
Mothers
Table 1 shows the participation of mothers at the three sites and the number of mothers at
each site who had formula fed from birth, had initiated breast-feeding and stopped, and who
were still breast-feeding at the time of the interview. All respondents but one in Tugela Ferry
were the mothers of the sample children.
Table1. Participation of mothers
Total
Refused to
number of
participate
participants
Umlazi
27
0
Tugela Ferry
46
1
Port Shepstone 10
0
Total sample
83
1
Arranged
interviews
7
13
0
20
Formula
feeding
from birth
14
22
0
36
Table 2 General characteristics of mothers and infants
Age of sample mother in Age of sample child in
years
months
Mean
Std. Dev
Mean
Std. Dev
Umlazi
26.7
6.07
5.67
4.54
Tugela Ferry
28.0
6.34
8.23
6.16
Port Shepstone 29.4
3.78
10.3
4.16
Total sample
27.7
6.00
7.64
5.62
Had breastfed and
stopped
6
13
10
29
Still breastfeeding
7
11
0
18
Birth order of sample child
Mean
Std. Dev
2.19
2.93
3.00
2.70
1.36
1.18
1.70
1.68
10
Some general characteristics of the mothers and children are shown in Table 2. A number of
socioeconomic characteristics are shown in Table 3. All respondents in Umlazi and all but one
in Port Shepstone had some schooling. In Tugela Ferry 30.4 % never went to school.
Table 3 Socioeconomic characteristics of mothers
Piped water to
Fridge or
house or yard
Freezer available
%
%
Umlazi
100
51.9
Tugela Ferry
26.1
19.6
Port Shepstone 50.0
40.0
Total sample
53.0
32.5
Mother has
regular income
%
14.8
45.7
30.0
33.7
Attended high
school or higher
education %
29.6
28.3
20.0
27.7
Interviewed counsellors
22 PMTCT counsellors were interviewed. Their mean age was 30 years (18-49) and 81%
(n=18) were female. They had a mean 19.5 months (1-48) counselling experience and the
stated average number of clients per week was 20.5 (5-60). All but one of the interviewed
counsellors worked full-time. All were educated in HIV and infant feeding and in breastfeeding. All had attended high school and only one had not completed it. 22.7% (n=5) had
some further education.
Respondents to the self-completion questionnaire
46 PMTCT Counsellors filled in the self-completion questionnaires. Courses in HIV and
infant feeding had been taken by 74% (n=34) of them. 91.3% (n=42) were female.
Use and Supply of free infant formula
Mothers
Among women who had used formula, 15.4 % (n=10) said other women on the PMTCT
programme sometimes use the free formula they receive from the clinic for other purposes
than for feeding the infant. The figures for the whole study population are seen in Table 4.
Most said formula is sometimes sold. One mother volunteered information on how much a tin
of formula cost and which mother was selling it.
Table 4 Mothers responses on how free formula is used
Used only for
Used also for
Don’t Know
infant
other
Purposes
N
%
N
%
N
%
Umlazi
12
44.4
5
18.5
10
37.0
Tugela Ferry 33
71.7
5
10.9
8
17.4
Port
6
60.0
0
0
4
40.0
Shepstone
Total sample 51
61.4
10
12.0
22
26.5
Total
N
27
46
10
%
100
100
100
83
100
11
The majority of mothers who have used formula have run out of formula at sometime, as
shown in Table 5. Many say it is because the baby eats too much and the formula they
receive is not enough. Most have been out of formula for less than one day, but some have
run out for up to one week and given water, glucose water or porridge in the meantime. Most
women bought formula when they ran out, but this was less common in Umlazi.
Table 5 Mothers who have run out of formula sometime
Have run out
Have never run out
Umlazi
Tugela Ferry
Port Shepstone
Total sample
N
11
17
6
34
%
55.0
51.5
60.0
54
N
9
16
4
29
%
45.0
48.5
40.0
46.0
Missing
answers
N
0
2
0
2
Total
N
20
33
10
63
%
100
100
100
100
Interviewed counsellors
Of the interviewed counsellors, 32 % (n=7) thought that formula is sometimes used for other
purposes than feeding the infant. All seven said it is sometimes sold for cash, in addition one
said formula from the clinic is sometimes used for cooking (in tea). One suggested formula is
sometimes exchanged and one said it is sometimes loaned to someone.
Sixteen (72.3%) of the interviewed counsellors said mothers on the programme sometimes
run out of formula at home. 9.1% (n=2) of the counsellors, one at a small clinic in the Tugela
Ferry area and the other at a clinic outside Port Shepstone, said this is not happening, while
four (18.2 %) at small clinics in the Tugela Ferry area answered that they did not know.
Counsellors are aware that not all women can afford to buy formula when they run out, but
say mothers give nothing or water instead. Counsellors at both clinics in Umlazi, and at three
clinics in the Port Shepstone area had experienced that the clinic had run out of formula.
There was no supply of formula at all to the clinics in the Tugela Ferry area so all mothers
were sent to COSH to collect the free formula.
Respondents to the self-completion questionnaire
Of all the respondents to the self-completion questionnaire, 19% (n=7, 10 missing answers)
thought formula supplied to women on the PMTCT programme was sometimes used for other
purposes than feeding the infant. Among the subset who were infant feeding counsellors, 21%
(n=6, 5 missing answers) thought women sometimes used formula for other purposes than
feeding the infant.
Of the respondents in this group 19.6 % (n=9) said that the clinic where they worked had had
problems with availability of infant formula, 47.8 % (n=22) had not experienced availability
problems, 8.7 % (n=4) answered that they did not know and 6.5 % wrote that this question
was not applicable to them. 17.4% (n=8) did not answer this question.
12
Early and rapid cessation of breast-feeding
Mothers
Table 6 shows the reasons mothers gave for stopping breast-feeding early. Mothers who had
stopped because of PMTCT reasons (1 in Umlazi, 7 in Tugela Ferry and 9 in Port Shepstone)
stopped at 4 (n=2) or 6 (n=15) months and took in average of 6.59 (0-21) days to stop breastfeeding completely daytime and 6.47 (0-28) days to stop at night. Those who had stopped for
other reasons stopped in 4.00 days (0-21) daytime and took in average 3.37 (0-21) days to
stop at night.
Table 6 Mothers’ reasons for stopping breast-feeding early
Reason for stopping breast-feeding N
Counselled to stop
17
Medical reason
3
Mother away from home
2
Did not have enough breast milk
2
Baby did not want breast milk
2
Total
26
Missing
3
%
65.4
10.3
6.9
6.9
6.9
100
While stopping early for PMTCT reasons, 35.3% (n=6) experienced breast difficulties. This
can be compared to the 23.5 % (n=4) in the same group who had had breast difficulties while
breast-feeding. The type of difficulties experienced while breast-feeding were sore, painful,
itchy nipples (n=3), crackled nipples (n=1) and swollen breasts (n=1). Most women did
nothing about this (n=4). The type of difficulties experienced while stopping breast-feeding
abruptly were sore, painful, itchy nipples (n=6) and swollen breasts (n=2). Three women did
nothing about this, some put pads on their breasts (n=3) and others rubbed their breasts (n=2).
No one had had difficulties with breast or nipples since stopping breast-feeding. While breastfeeding, one woman had experienced difficulties with her baby. 41.2 % (n=7) had
experienced difficulties with their baby while stopping breast-feeding early and abruptly.
11.8% (n=2) women said they had experienced difficulties with their baby since stopping
breast-feeding. Mothers who had stopped breastfeeding for other reasons experienced fewer
problems when stopping. Only one woman in that category experienced breast difficulties
when stopping.
52.9 % (n=9) of those who stopped breast-feeding early for PMTCT reasons felt they had
support while doing this. Four of these mentioned support from counsellors; others mentioned
family members as the source of support.
Interviewed counsellors
Fifty-nine percent (n=13) of the interviewed counsellors said that they advise HIV-positive
mothers to stop breast-feeding at 6 months, while 27.3% (n=6) advise mothers to stop at 4
months. Two counsellors said they advise mothers to stop at 3 months and one tells mothers to
stop at 2 months. With one exception, where more than one counsellor was interviewed at the
same clinic, all gave the same advice on when to stop breast-feeding.
When asked how long time he or she advises the HIV-positive mother that the stopping of
breast-feeding should take, 45.5 % (n=10) of the counsellors answer immediately, in less than
13
one day. 22.7 % (n=5) advise one day, one counsellor each say 2 or 4 days, two counsellors say
one week, one says three weeks and one answers four weeks. At none of the clinics where
more than one counsellor was interviewed, was there concordance on this response among
them.
The percentage of counsellors who believe that breast difficulties are common among women
who breast-feed is 68.2 % (n=15), while 31.8 % (n=7) think that breast difficulties are common
when women stop breast-feeding early and abruptly. 18.2% (n=4) think breast-feeding women
often experience difficulties with their babies and 63.6 % (n=14) think difficulties with babies
are common when the mother stops breast-feeding abruptly. Forty-five percent (n=10)of the
interviewed counsellors give no advice or say they don’t know what to advice women who stop
early. Advice given by the others is to put pads or cabbage-leaves on the breasts, express milk
or take drugs to stop milk flow.
Self-administered questionnaires did not include questions on this.
Responses to formula feeding
Mothers
All mothers who chose to formula feed from birth and gave formula at the labour ward, were
supplied with formula from the clinic. Of formula feeding women, 35.7 % (n=5) in Umlazi
felt criticised by labour and postnatal ward staff and 21.4 % (n=3) felt supported. In Tugela
Ferry, 47.6 % (n=10)of formula feeding women felt support from staff at the labour and post
natal ward and no one felt criticised. Two women in Tugela Ferry felt criticised by security
guards at the gates of the hospital when they came to collect formula; one woman had been
stopped and accused of stealing formula. Most respondents said however that they did not
meet any reactions from staff at the hospital when they came to collect formula.
In Umlazi, 20.0 % (n=4) of the mothers often felt criticised by their family for formula
feeding, and 35 % (n=7) felt support from the family. In Tugela Ferry 37.5 % (n=12) felt
supported. In Port Shepstone 60 % (n=6) of the interviewed women felt they had support from
their family. No one at the rural sites felt criticised by her family. 45 % (n=9) in Umlazi, 50 %
(n=16) in Tugela Ferry and 50 % (n=5) in Port Shepstone felt support from the father of the
child. 20% (n=4) in Umlazi and 6.3% (n=2) in Tugela Ferry often felt criticised by other
members of the community. Only one woman in the study felt the community response to her
formula feeding was supportive.
Infant feeding counselling
Table 7 shows how many counsellors said they were confident about counselling women on
the programme about all or most aspects of infant feeding, breast-feeding or early cessation of
breast-feeding.
Interviewed counsellors
The PMTCT training was found relevant or very relevant by 77.3 % (n=17) of the interviewed
counsellors.
14
Respondents of the self-completion questionnaire
Among the counsellors who completed the self-completion questionnaire 94.3 % (9 not
applicable and 2 missing answers) found the PMTCT training they received relevant or very
relevant.
See Table 7 for figures on confidence in different types of counselling. One counsellor who
filled in the self-assessment questionnaire was not confident at all about giving advice on
early cessation of breast-feeding, but this was not an infant feeding counsellor.
Table 7 Counsellors’ confidence in different types of counselling
Interviewed
Self-assessment
counsellors
N
%
Confident in counselling
19
86.4
33
89.2
about Infant Feeding (IF)
Confident in counselling
21
95.5
32
84.2
about breast-feeding
Confident about
18
81.8
31
81.6
counselling early
cessation of breastfeeding
Self assessment IF
N
%
29
93.5
28
90.3
27
87.1
Discussion
That infant formula provided by the programme is used for other purposes than for feeding
the infant may have a negative impact on nutritional status or lead to an increased risk of
MTCT for certain infants. At the very least, it lowers the efficiency and cost-effectiveness of
the programme.
Methodological Issues
In research where data are obtained in interviews, the wording of questions is of utmost
importance. Difficulties were reduced by pretesting and rewording of difficult or sensitive
questions. All the interviews with mothers were carried out in the presence of a translator who
did not come from the same area as the respondents. During the study, two different
translators were used. Differences in the sensitive interviewer-translator- respondent
interactions due to this may have influenced the responses received. Half of the interviews
with counsellors were done in English and the other half with translation into Zulu. The same
interviewer-translator-respondent interactions apply here, but I generally felt that the
counsellors felt comfortable being interviewed. That the self-assessment questionnaire was
distributed by the field researcher in an educational environment and that the translation was
made by the teacher of the course may have influenced the respondents to give the “expected”
answers. On the other hand, the self-assessment was filled in anonymously which could have
made the counsellors feel freer to express their true thoughts.
15
The intention was to carry out the study at two sites with clear urban-rural features.
Sample size was less than planned due to bureaucratic delays and other practical
considerations such as the unpredictable attendance of mothers to the clinics. Due to this,
some interviews in Umlazi and Tugela Ferry were arranged by the clinic staff and an
additional site was chosen.
This sample, even the segment from Umlazi, seems to be of lower socioeconomic status than
Bergström’s sample from Umlazi and central Durban (Bergström, 2003). Given that in this
sample women with a regular income were less likely to have a refrigerator, the commonly
used indicator “mother has regular income” would seem to be misleading in an urban-rural
sample such as this one.
Use and supply of formula
Evidently there is a market for the formula received for free from the PMTCT programme
since both mothers and counsellors believe that some formula is sold off. This in turn could
relate to the high number of women who run out of formula before their due date to collect
more at the clinic. One implication of this can be that some children don’t get all the nutrients
and energy they require. Some mothers mentioned that they gave water, sugar water or
porridge to their infants when they run out of formula, which could compromise the child’s
nutritional status. Others may maintain lactation to cover the child’s needs when formula runs
out, leading to increased rates of mixed feeding and thus a risk of HIV transmission that the
free formula is intended to avoid.
A mother who is breast feeding and does not tell the counsellor she is doing so will not be
advised on attachment and positioning of the baby at the breast, will not receive information
on early and abrupt cessation, and is less likely to approach the counsellor for advice about
breast feeding issues. This mother may thus have an increased risk of breast health difficulties
which in turn is associated with increased risk of HIV transmission. Information about
breastfeeding depends on the relationship between the caregiver and the counsellor and
should also be easily accessible for all mothers.
Replacement feeding in this population does not necessarily become acceptable, safe,
sustainable or even affordable simply because formula is provided for free. In this study,
mothers often ran out of formula at home, and had to buy additional formula. This was also
common in Khayelitsha (Chopra et al., 2002) If this is because the supply is not sufficient, the
babies eat too much as mothers and some counsellors argue, or because formula is used for
other purposes is difficult to determine for certain. Bergström’s data suggest that overconcentration when preparing feeds is not the cause (Bergström, 2003). Indeed, she found that
a substantial proportion of mothers over-dilute the formula, further suggesting that either
amounts given are too small or mothers are using it for other purposes. The answers the
counsellors gave imply that they do not discuss openly why the mothers run out of formula.
Either they accept the answer that the baby ate too much, or they share the mothers’ opinion
that the amount of formula given is too small. Further research that shows at what period of
the infant’s life mothers run out of formula most frequently would give some clues as to
whether growth spurts with increased needs for formula occur.
16
A sustainable supply of formula is not guaranteed to women enrolled in the KZN PMTCT
programme because the supply of formula to the clinics is interrupted at times. The
underlying causes of this need to be explored and prevented. At least some of the logistic
reasons for this problem should be possible to overcome in this setting. The weakest link may
in some cases be the supply of infant formula to the clinics rather than the use of formula in
the child’s home.
Early cessation of breast-feeding
There are currently no guidelines for how the transition from exclusive breastfeeding to
exclusive formula feeding should take place. Counsellors give different advice, even within
the same clinic. Remarkably, nearly all the counsellors nevertheless say they are confident
about counselling women to stop breastfeeding early and abruptly. The advice counsellors
give seems to be drawn from their experience and shows a large discrepancy. To advise
women to stop immediately overnight at 6 months was the most common recommendation
but some counsellors recommended a transition time of up to 2 months. Early and rapid
cessation of breast-feeding must be further explored and if found feasible and safe, presented
in a clear way within the education of infant feeding counsellors.
Responses to formula feeding
Some mothers felt criticised from family and the community for not breast-feeding.
Alarmingly, several mothers felt criticised by staff when they gave formula at the labour
ward. Several mothers also expressed fear that staff and other people in the community would
guess their HIV status when seeing them collect the free formula. As the community becomes
aware of the details of how the PMTCT programme works, the risk of mothers unwillingly
disclosing their status by following the recommendations of the programme will increase.
Infant feeding counselling
The purpose of the counselling is to help the mother make the choice that will lead to the best
health outcome for her and her baby. The counselling will never be better than the counsellor.
At the refresher course meeting I attended, great emphasis was put on confidence building.
Although it is important that the counsellor feels secure in his or her role to be able to comfort
and encourage the client, confidence must not be a surface beneath which to hide lack of
knowledge. All of the counsellors I had the opportunity to observe interacting with clients
showed respect for the individual and often greeted the client with warmth, something that is
of great importance since these women often face lack of understanding from other people
and have few places where they can talk openly about their disease. The HIV-positive parent
has a difficult decision to make, even when presented with all the relevant information. The
counsellor must not be held back in presenting this information by having to take
responsibility for the outcome of the mother’s choice.
17
Conclusion
Formula provided by the programme is sometimes used for other purposes. Supply of formula
to all PMTCT clinics is not ensured by the programme. Even if mothers are supplied with free
formula, they sometimes run out of formula at home. However, the present study was not able
to measure the extent of this. Women in this population often experience difficulties with
breasts and with their babies when stopping breast-feeding early and rapidly.
Acknowledgements
This study was made possible with a Minor Field Study grant from Swedish Development
Cooperation Agency through the Department of Women’s and Children’s Health, Uppsala
University.
I am grateful to my advisor Ted Greiner for sharing his interest in and enthusiasm for the
subject and for support throughout the whole study process. I thank my co-advisor Nigel
Rollins for enormous help with practical arrangements and for enabling me to find the
necessary contacts in South Africa.
I am grateful to Dr Daya Moodley, project manager for the PMTCT-program, Dr Willem
Vlok and Ms S’ne Sithole at KZN-PMTCT office, for being explicit with what they wanted
out of this study and for making valuable suggestions on the organisation of the study.
I would also like to thank those people who were responsible at different levels for letting me
conduct the study at named study sites: Mark Colvin, Medical Research Council, Durban, Ms
O. Shandu, Matron Section D clinic, Umlazi, Ms M.P. Bouwer, District manager, Newcastle,
Mr H. Human, Hospital Manager, COSH, and Ms N. Phillips, Hospital Manager, Port
Shepstone Hospital.
I thank all who facilitated at the study sites; I would especially like to mention Ms Thokozile
Ndaba and the Good Start Infant Feeding Study Team and the nurses at the PMTCT clinic at
Prince Mshiyeni Memorial Hospital, Umlazi, Dr Tony Moll and the infant feeding counsellors
at COSH, Ms Noeleen Phillips and nurses and infant feeding counsellors at Port Shepstone
Hospital and Ms Nombulelu Koom and Ms Nozipho Mpungose for translation.
My warmest thanks to all the counsellors and mothers who participated in the study.
18
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