Background
Methods
Study sites
Study participants
Data collection
Data analysis
Results
Challenges accepting lifelong ART | |
---|---|
Challenge accepting ART when feeling “healthy” | • Women struggled with to accept ART when they felt healthy because ART is associated with being very ill or having a low CD4 count. |
Preference for short-course prophylaxis | • Women preferred the short-course prophylaxis so that they could avoid disclosure and tell their partner or family that the drugs were related to the pregnancy |
Overwhelmed by lifetime commitment | • Most women were familiar with the concept of developing resistance, which caused some to delay initiation until they felt “ready” to commit for life |
More information needed on ART | |
Fear of side effects | • The fear of side effects was often related to deformities and changing physical appearance. Nurses believed this was associated with a drug no longer in use (Stavudine) |
Number of clinic appointments | • Nurses reported considerable variation in the number of adherence counseling appointments a woman needed and advocated for the nurse's discretion to determine the number of adherence counseling sessions on an individual basis |
More information needed at the community level | • Nurses reported being too busy at the facility to provide education sessions in the community (which had previously been provided) |
Educating men about HIV and ART | • Women reported their partners lacking information about HIV and ART and becoming abusive at the mention of either topic |
Individual interviews | Focus group discussions | |||
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Initiated ART
N = 50
n (%) | Did not initiate ART
N = 33
n (%) | Initiated ART
N = 16
n (%) | Did not initiate ART
N = 6
n (%) | |
Age (years) | ||||
16–20 | 5 (10 %) | 5 (15 %) | 0 | 0 |
21–25 | 19 (38 %) | 10 (30 %) | 5 (31 %) | 1 (17 %) |
26–30 | 12 (24 %) | 11 (33 %) | 5 (31 %) | 4 (67 %) |
31–35 | 10 (20 %) | 6 (18 %) | 5 (31 %) | 1 (17 %) |
36–40 | 2 (4 %) | 0 | 1 (6 %) | 0 |
41–44 | 2 (4 %) | 1 (3 %) | 0 | 0 |
Marital status | ||||
Married/living with partner | 23 (46 %) | 18 (54 %) | 11 (69 %) | 4 (66 %) |
Single | 27 (54 %) | 15 (45 %) | 5 (31 %) | 2 (33 %) |
Education | ||||
None | 2 (4 %) | 1 (3 %) | 0 | 0 |
Primary | 14 (28 %) | 9 (27 %) | 5 (31 %) | 3 (50 %) |
Secondary | 31 (62 %) | 22 (67 %) | 10 (63 %) | 3 (50 %) |
Tertiary | 3 (6 %) | 1 (3 %) | 1 (6 %) | 0 |
Religion | ||||
None | 0 | 2 (6 %) | 0 | 0 |
Catholic | 2 (4 %) | 0 | 2 (13 %) | 0 |
Protestant | 39 (78 %) | 27 (83 %) | 14 (87 %) | 6 (100 %) |
Islam | 0 | 0 | 0 | 0 |
Other | 9 (18 %) | 4 (12 %) | 0 | 0 |
Nurses N = 35 n (%) | |
---|---|
Age (in years) | |
26–30 | 6 (19) |
31–35 | 6 (19) |
36–40 | 9 (29) |
41–45 | 9 (29) |
46+ | 1 (3) |
Level of qualification | |
General nurse | 4 (13) |
Nurse midwife | 27 (87) |
Current designation | |
Nurse midwife | 6 (19) |
Senior nurse | 4 (13) |
“Sister” | 2 (6) |
Staff nurse | 19 (61) |
Years in current position | |
1–5 | 14 (45) |
6–10 | 8 (26) |
11–15 | 5 (16) |
16–21 | 4 (13) |
Nurse designation (lowest to highest ranking position) | Role of nurse |
---|---|
Nursing Assistant | This level nurse as depicted by the title assists the higher level nurses. They have very limited duties such as providing childhood immunization; dispensary and they are not allowed to prescribe. |
State registered Nurse (Staff nurse/General nurse) | This level nurse does everything the midwives do except that they do not conduct ANC, maternity/delivery services. |
Nurse midwife | This level nurse performs ANC services, delivery, post-natal care, and other services related to maternal child health and curative services. They are usually the nurse-in-charge/senior nurse of the facility when there are no doctors present. |
Senior nurse | This is more of the role than qualification. This person is usually the most senior midwife at the facility where there are multiple individuals with the same qualification In most cases, this person is the nurse-in charge and also oversee the day-to-day running of the facility just like the nurse-in charge or in the absence of a nurse-in charge. |
Nurse-in charge (Sister) | This is the person in charge of the local health facility. They oversee the day-to-day running of the facility just like the senior nurse. |
Challenges accepting lifelong ART
Feeling “healthy” when asked to initiate ART
Sometimes you can even ask if the nurses are really serious or if they are just joking when they tell you that you are now eligible for HIV medicine when in actual fact you feel healthy and haven’t fallen sick (Woman).
Sometime you find that these women come knowing their HIV status while others come with unknown HIV status. Those who come up [test] positive, they tend not to go for ART because they believe ART is for those people, say those whose CD4 are very low or those who are almost sick so for them they don’t feel the need to start the ART because …eh…eh…their coming to the facility is to start ANC so starting treatment when they are not sick, no they…they… they don’t feel like [starting ART] (Nurse).
If for instance, you were to tell me right now that because I have ‘brackets’ I need to put on casts to strengthen my legs I won’t agree because I am comfortable with the way I am. So even with these women it’s the same thing. I come here healthy to do my ANC and then all of a sudden you are telling me I’m sick. I have to be on ART. I think that’s the other problem. These women come here feeling very healthy and now they are going back home with a sack of tablets (Nurse).
Those who are pregnant and have found out about their HIV positive status during the pregnancy, are usually the most difficult to initiate. But the one who fell pregnant knowing her status is generally easier to initiate. So I think we should strengthen teachings on HTC and encourage women to make sure that they know their HIV status before falling because, like I said it’s easier for those who know their HIV status than this one (coughs) who has just come and is newly diagnosed HIV positive (Nurse).
Preference for short course prophylaxis to avoid stigma
I wanted to comment on the issue of those women who were pregnant before, and were given intrapartum dose 1 and gave birth to a HIV negative baby, and now on her second pregnancy you tell her that she now has to initiate ART. Most of these women find this very hard to take because they do not understand why they cannot be given the short course instead of the lifetime commitment. There is a lot of resistance from these women in most instances, but with on-going counselling you are able to convince some (Nurse).
…some of them say that they haven’t disclosed to their partners so they say it’s difficult to start ART especially if you haven’t disclosed your HIV status. They say it’s better [to take drugs] during the gestation period since they can just take the drugs as if they are drugs taken during pregnancy. But then if she gives birth then it’s a problem because she has to stop taking the drugs since she has not disclosed to the partner (Nurse).
Overwhelmed by lifetime commitment of drugs
I was just scared because I had heard them say that you have to take drugs for life and I was traumatised that I would have to drink them for the rest of my life…must I agree to this or not? I just couldn’t believe it such that I even cried when they told me that I would have to start taking the medication” (Woman).
The father of my baby said we can wait a little and use bio-plus (a popular tonic in Southern Africa) to boost CD4 instead of taking the medication spontaneously because the medication is lifetime bidding (Woman).
I once heard that some women hide the pills when they reach home and with the hope that one day they will have the motivation to start taking them. It is said that they plan to keep them hidden for quite some time because they are told that once you start taking them it should be a lifetime commitment (Nurse).
(Women say) I don’t see myself being able to take the medication for the rest of my life because I don’t trust myself I will be able to follow all your instructions (Nurse).
…what I usually tell them is that HIV is not the only illness where you have to take chronic medication. Think about diabetes, hypertension, epilepsy, asthma, heart disease and other stuff, so it’s the same with HIV! (Nurse).
More information needed on ART
Fear of side effects
I once had a patient who was adamant that she didn’t want to enroll on ART because she didn’t want to be deformed and be like ‘a man’… She also gave me an example of some people that she knows who have those side effects. She said some of those people were once pretty but now they are a far cry from their former self” (Nurse).
Number of clinic appointments before initiating lifelong ART
Some women feel there are too many (adherence appointments). But women are different. Adherence counselling is very important (Nurse).
One of the few issues that we have to take seriously because if we prescribe two sessions for all adherences, we are risking downfall in terms of technical outcomes… while we fast track pregnant, positive women but also try to evaluate individuals; really is this person really going to be adherent? Do we still need more counselling sessions or not? The appointment date; let’s make it maybe closer, let’s not give one month supply. Let’s give it two weeks supply and have another adherence session in two weeks’ time. So I think it is important that we do individual evaluations and let’s not say two sessions and that’s it (Nurse).
More information needed at the community level
People do not know the importance of [HIV] testing and knowing your status. The people do not know, so they are not motivated to request that service. We have to do community mobilisation and health talks on HTC, and teach people and be ready to inform them about the current statistics. We need to tell people how HIV is linked to some of the illnesses currently prevailing in Swaziland. Therefore, from that stand point, everyone has to have information about HIV and be encouraged to test so that stigma can be curbed (Nurse).
Back in the day nursing was not just limited to curative services and because of that we have the current disease burden because people are not educated. Back then as a nurse, you had to go to every community meeting to give a lesson on health. But because we now focus on curative interventions we are having these challenges (Nurse).
Educating men about HIV and ART
When I tried to convey the message of initiating ART he just became impossible. Even if I give him the card meant for our partners to come to the facility, he just acts wildly and threatens to punch me. When I told him I have since tested and I knew my status he just said keep that to you. I will know mine when my time has come. As for now I’m not even interested in knowing yours (Woman).
Most often you find that men are misinformed about issues and end up confusing women who are about to start ART. So as part of improving our system we have to find a way to engage men (Nurse).
I’ll talk about something I came across in my own community. There were some improvements last year. There is an increase in male involvement. (PSI organized a “Know Your HIV Status” Campaign targeted at men who brought their cattle to the dip tanks). So, the men would come and say, “I was at the dip tank and we got tested,”… and those men are different since they know their status… We still have some of them who come and retest. This shows that they really got the message about testing during the campaign (at the dip tank). So I think we have to involve communities (Nurse).