The FAUMA FGD participants were 22 to 38 years of age (mean 31.5 years). Seven women described themselves as married, four as single or divorced and one as widowed.
Baseline characteristics were available for 23 out of the 24 participants recruited for IDI from the ComTru Study. Only marital status was available from the last woman. Their age ranged from 21 to 43 years (mean 27 years). Fifteen were married, four were cohabiting with their partner, one was divorced, one was separated and three were single. Twenty were Muslim and three were Christian. Seventeen had primary education and six had secondary.
Baseline characteristics were not collected systematically from participants recruited directly from the CTC. However the interviews indicate that the situations and concerns that this group of women shared with us were in accordance with those of general study population.
Three main themes emerged from the data: 1. Diagnosis and disclosure; the fear and reality of repercussions, 2. Deterrents from seeking HAART and 3. Return to being a normal person; sources of encouragement and motivation to seek HAART. Analysis of the data showed that stigmatization toward HIV patients, although not ubiquitous, is still highly prevalent in Tanga and incurs a fear of ostracism from the community, divorce and financial distress in women diagnosed with HIV. The other fear faced by HIV infected pregnant women and mothers is that they will not be able to take care of their children. The fear of ostracism, divorce and financial distress is a weighty deterrent from seeking life prolonging HAART at the CTC, while the fear of not being able to take care of their children is among the strongest of motivators.
Diagnosis and disclosure; the fear and reality of repercussions
"If they find out they stigmatize you, they see you as a strange person. They don't see you as a normal human being - in general they stigmatize you." CoT IDI 17
This statement is representative of the description given by the majority of the participants in this study, when asked how PLHIV are perceived in Tanga. The stigmatization is expressed through actions ranging from gossiping and finger-pointing through exclusion from social interaction such as sharing a meal to complete segregation.
Shock, confusion, worry, fear, sadness, despair and depression are words used by the participants to describe how they felt immediately after receiving their diagnosis.
"I was out of my mind, confused, shocked, astonished - Why should I suffer so much?" CoT IDI 13
"I thought it was the end of my life. All the plans I had vanished. I started to despair." CoT IDI 23
Because of fear of stigmatization and of becoming the subject of malicious gossip seeking comfort from friends and relatives is not an evident course of action.
"They will segregate me because I am infected. (...) That is why I remain silent. If anyone discovers it fine, but I can't go and announce it to everyone, because we Swahili people if you quarrel (with someone) she/he will announce that you are infected! Everyone will despise you! They will be afraid of you and they won't ask for water from you." CoT IDI 6
The counsellors confirmed the reality of this stigmatization.
"And another thing is a belief out there that, 'he, who tests first, is the one who is infected.' So she is afraid of telling her husband, because he will tell her that she is the source (of the infection)(...). And the family members, like brothers and mother they believe that every person who is infected, he/she got it through sex, so they are afraid of being called prostitutes." TAWG/RC FGD
Disclosure to their partner can be particularly problematic. Most of the women interviewed only had primary education and one third of them were entirely financially dependent on their partner. Several women said, they had given up working because of their pregnancy, or because they have a small child. The anticipation of abandonment, violence and withdrawal of financial support for themselves and their children prompts the women to keep their status a secret from their partner.
"He has sworn to kill me several times and he is abusing me daily. He is not a person to advise these kinds of things (meaning: he is not a person to whom she can disclose her status) because I will be looking for trouble." CoT IDI 5
"He hasn't discovered (that I have HIV) yet. (...) The way I see their procedures even if I will tell him, it means they (her husband and his family) will torture me. I won't have fare (money) to return back home." CoT IDI 15
The fear of abandonment by their partner is well founded, as some of the women who chose to disclose have experienced.
"After those problems we separated. Yes, he dumped me because I am infected." FAUMA FGD
"I informed my husband and he went to test and discovered that he is not infected. He divorced me and said he can't live with some one of my kind." FAUMA FGD
This picture was also corroborated by the counsellors, who postulated the fear of the financial repercussions of divorce as a reason for non-disclosure of HIV status by women. In contrast to this, they maintain that HIV infected men do not face the same risk of abandonment by their wives.
Most of the time men become so sad when they are discovered to be HIV positive and their wife is discovered to be HIV negative, and as it is in the women's character they feel sympathy and pity over the men (...)They take into consideration that this is my husband I have already taken an oath (of marriage). TAWG/RC FGD
Furthermore, pregnant women are strongly encouraged to be tested for HIV for PMTCT. Thus a woman's HIV status is often established before that of their male partner. Men have the prerogative to refuse to be tested, and often do so, thereby protecting themselves from stigmatization.
I told him do you know I went for the test 2 times,(...) please could you go for the test. He told me I won't go because I'm not affected. CoT IDI 7
Thus the perception of PLHIV in the community, which may lead to potential abandonment and socio-economic deprivation, combined with opt-out testing for HIV being part of antenatal care, puts pregnant women at risk of finding themselves in a uniquely precarious situation.
Deterrents from seeking HAART
The CTCs are only for PLHIV. Consequently, going there means exposing your HIV status and putting yourself at risk of stigmatization by the community. This is described as the main barrier to presenting for treatment - particularly if the woman does not yet perceive herself as sick.
"I haven't gone to register myself at the CTC. I haven't gone to register myself because I haven't been sick. When you mention the issue of going to CTC my heart gets some sort of shock and I feel unhappy, depressed and different. That CTC place is for embarrassment and degrading yourself, because if you happen to be seen there by two or three people, they will no longer respect you and your status will be lowered." CoT IDI 5
The layout of the CTC, and in particular location of the entrance in an indiscrete area, where other people at the health facility can observe who enters the CTC, decreases the accessibility as it increases the risk of stigmatization by the community.
"I don't like the venue, because the entrance is in a place where all the patients who come to the hospital line up to register. Therefore when you go there (to the entrance of the CTC), all the patients, who are present, will see you." CoT IDI 4
People seeking treatment at the CTC must bring an adherence partner in order to initiate treatment. An adherence partner is a person chosen by the patient, who is supposed to encourage the patient to adhere to the treatment. Identifying an adherence partner can however be problematic, because it requires disclosure. Thus disclosure is necessary in order to obtain treatment. As described above, disclosure means exposing one self and risking stigmatization and rejection. This may mean that in their desperation patients try to persuade someone, whom they do not know.
"You can't start to give a patient medicine alone without her relative present, but some may say "I don't want my relative to know because of discrimination within the family". Therefore a person could suffer almost a month without starting to use medicine and she ends up by taking a person from the street, to be her witness in order for her to get medicine. But after few days people disappear because they chose someone from street and not their relative." CTC IDI 2
The CTCs are only open for adults in the morning and early afternoon during the week. Therefore the frequent visits to the CTC required in order to receive HAART and adhere to the treatment programme combined with long waiting time often results in repeated, lengthy absence from work or other income generating activities. This may lead to loss of income in two ways. The first is the loss of profit from small business activities such as selling cooked food. The second is loss of employment due to absence from work or stigmatization by the employer. These factors cause PLHIV to refrain from seeking treatment.
"Since I have been getting infections I waste my time coming here. At work, you always have to get permission that you will be late or you won't come. And sometimes when you get here to CTC, there are a lot of patients and only one doctor. (...) So you are supposed to follow the line (meaning wait in line), while at work they are waiting for you. It becomes a real problem." CoT IDI 4
In a personal communication to ZPT some time after the interview this participant disclosed that she had been fired from her job due to absence for CTC visits.
The TAWG and RC counselors also emphasized that frustrations with poor service and management of tests at CTC and the cost of frequent futile visits discourages patients from going to the CTC.
The traditional healers are often the first people from whom treatment is sought for any kind of ailment. Therefore when PLHIV seek a traditional healer, they know what to expect.
"Because most Africans used to go to the traditional doctors when they are sick, so that is normal. Not necessarily a specific kind of problems like sickness only, also some social stuff like she has a quarrel with her husband, or (problems with) business, she goes to the traditional doctor perhaps she had been cursed. So when you enter into the traditional doctor's house you can't be shocked by what happens there." TAWG/RC FGD
As described by both patients and counsellors, there are a number of traditional healers in the community in and around Tanga, who claim to be able to cure HIV. Some PLHIV therefore choose to seek this treatment rather than the option provided by the CTCs, which requires taking medicine every day for the rest of their lives.
"(Some people go to) the traditional doctors and get medicines, and those viruses die. I mean I just heard it from the place where I am doing my business of selling fish. There is a man who gives out medicines for AIDS. If you get 3 bottles of 5 liters all the viruses will die. So some of them (other PLHIV) are going there! Because they don't want to take drugs their whole life." CoT IDI 6
Furthermore, traditional healers are described as less likely than health care workers at the clinics to disclose their patients' sero-status to others.
"Usually the characteristic of traditional healers is that they are very secretive - they can take care of the patient without telling anybody. Some of the medical doctors they have that problem. Some of the doctors will say "you see that woman - she is living with HIV and still she is so strong!" So there is a tendency of medical doctors saying that, and also other medical professionals." TAWG/RC FGD
Return to Being a Normal Person: Sources of encouragement and motivation to seek HAART
Despite their fears most of the participants chose to disclose their HIV status to someone, and most received a supportive response, which lead to relief and to feeling once again like a normal person.
"I was stressed the first weeks. After my husband comforted me I started to see it as a normal situation. First my husband advised me that I should not have stresses or be short tempered; I should live like a normal person, and eliminate this problem from my heart. I mean I should be like a normal person and I should eat to the fullest" CoT IDI 17
"For sure I didn't feel good. Firstly it was my first time to give birth, then I didn't know what condition would happen to my kid to whom I will give birth, therefore after my mother comforted me I recovered my normal situation and I take it as if it is malaria despite that malaria has cure." CoT IDI 12
The importance and impact of counselling was highlighted by the participants and gave some of them the confidence to go to the CTC. Women, who were afraid to disclose their status to their partners and own social network, regained confidence through positive interaction with the nurses and doctors.
"After they taught me and motivate me I have come to see myself as a normal person. At first I had some thoughts, but after what Mama X (one of the PMTCT nurses - her name has been removed to protect her privacy) taught me they have gone" CoT IDI 24
"No now I don't have at all (concerns about what people she met at the CTC are thinking about her) Due to that advice, every time when I consider that advice which they gave me, therefore I see it like a normal thing. CoT IDI 9
When the participants were asked how to motivate those, who are afraid to attend the CTC, the importance of counseling was once again emphasized.
"What to do is to find them, to talk to them on the fact of their condition, is not dangerous disease to fear, is like malaria (...) perhaps the classes they have been given is not going to their minds, they need to sit down and have a real education individually so as they could understand and be adherent" CoT IDI 12
Interaction with other PLHIV helped participants to accept their HIV status and encouraged them to seek treatment.
"I met with other people so I thought it is a global issue. I saw it as a problem which can happen to anyone. I met with children who are one year old at the CTC, elder women with their white hair and stick come to CTC! I realized that this problem can happen to anyone" CoT IDI 6
Taking HAART is understood by the HIV infected mothers as the way to remain healthy and able to raise their children - an instinct which is a strong motivator.
"Because I like to take care of my health and I have the dream to raise my child until he/she will help him/herself, therefore it's very important for me to check my health. That is very big issue which encourages me even today" CoT IDI 8
Furthermore patients on HAART reported satisfaction with the effect of the drugs.
"I have taken ARVs, but they didn't disturb me. (...) At that time when I hadn't started using them yet I was very weak! I was weak and tired! I felt bad! But since I started taking medicines my strength is coming that is why I focus on taking the drugs" CoT IDI 1
Several of the women in the FAUMA FGD had been attending the CTC for some time, and expressed satisfaction with the services received there, including how they are treated by the staff.
"I will be in Bombo (CTC) all days because, it is good, there is peace, there are good teachings, and if you are in trouble they help you without any problem." FAUMA/RC FGD
These sentiments were echoed by IDI participants
"They are great, the nurses and doctors offer good treatment/services. There is no problem. Even before the date (to collect her medicine) I am around and am going there to get some advice where by it helps me a lot(...). " CoT IDI 4