Living with HIV in Rural communities |Living with HIV can be a life changing experience. Haven’t interacted with many such people within the scope of my work as a health journalist, I can only imagine what it could be like.
The turning point of it all is that moment when you are positive, your partner is not and you have to break the news.
Living with HIV in Rural communitiesLiving with HIV can be a life changing experience. Haven’t interacted with many such people within the scope of my work as a health journalist, I can only imagine what it could be like.
The turning point of it all is that moment when you are positive, your partner is not and you have to break the news.
The biggest challenge of disclosure when as a care giver, you are aware of the status of one partner and cannot disclose his or her status to the other per the ethics of the profession, meanwhile the one who is positive has refused to do self-disclosure.
This is the last bit of my experience in Mangoase on Living with HIV in Rural Ghana.
Such is the situation of Martha Asiedu a care giver in the Mangoase community and the midwife in charge at the CHPS Compound.
Martha tells me, one of the challenges of living with HIV in a rural community is that of non-disclosure.
According to her, most of her clients are women who attend antenatal services, and as per the policy to prevent mother to child transmission, she has to provide HIV testing services.
“If a woman is found to be positive, they refuse to bring their husbands for testing” Martha tells me.
“And when I confront them in a friendly manner too, they give me the excuse that, their husbands would divorce them if they found out that their wives are living with HIV, sometimes it worries me but I don’t know what to do too”
The case of Martha is not an isolated one, Gifty Addo-Tetebo is a senior nurse and the Regional Cordinator for HIV and AIDS in the Eastern Region, and narrates a very interesting scenario.
“There was a time I had this client who were about to get married, after they had gone through counselling and their blood samples taken, the results were brought in and it was time for disclosure. After the routine counselling, it was time for they themselves to decide who would do the disclosure first; the guy decided to do his first, so he opened his report and showed it to his partner that he was negative. In some few seconds, the girl quickly said she was also negative, and like a flash, held the hand of her husband-to-be and whisked him out of the office.
Unknown to the gentleman, the lady was positive and had even been receiving treatment at a facility.
I tried calling them to come back to the hospital for us to finish the process so I could find a way to convince the lady to do self-disclosure, but they would not come.
I called the lady alone and asked why she was doing that, her answer was “na ongyae me” to wit – so that he would leave me”
According to Mrs Addo-Tetebo she found herself very helpless because she knew that the gentleman in question would definitely be infected by the wife, but they two could be managed if they would both know each other’s status and would gladly visit the facility for treatment.
This is the herculean hurdle of the caregiver.
Speaking to Golda Asante, a former Technical Coordinator of the Ghana AIDS Commission, she discloses that she sometimes had to go to the extent of threatening some people with legal action before they disclose their status to their partners.
She was blunt, “disclosure is a big issue when it comes to managing persons living with HIV. As a counsellor you have to counsel your client and let him or her know the importance of disclosure. But after doing your best, if the client decides that I will not, there is little you can do. And you can disclose if it is to benefit the client, but by and large, the client is expected to do the disclosure.
The implication is difficult, managing a client who has not disclosed to their partner especially if the person is married”
LIVING WITH HIV IN RURAL COMMUNITIES | IMPLICATIONS
Touching on the implications of non-disclosure especially in a marriage setting, she said, “if they are married, disclosure is important because it is expected that, they can protect themselves because of re-infection, at least at the initial stage, but when the person is on treatment and adheres to the treatment regimen for some time, then you can also have a different approach all together.”
“But if the person is not on treatment, and is not prepared to take the medicine, and has not also disclosed, it is also another thing. If the person starts medication and nobody knows, no relative knows, no close friends knows about their status and treatment, then the necessary help would not be there, because when you start medication, you need to eat well, both at the initial stage especially for those who are at the advanced stage
Because if you are on treatment, you need to eat well, and if nobody knows, you would not receive the necessary help to be able to eat the necessary balanced diet.”
And even in the office, there are some work which may be labour intensive and if nobody knows, they would put you on it and you would be falling sick and it would not help you, so clients are counselled to look for somebody who can understand you and can support you so you can disclose.
LIVING WITH HIV IN RURAL COMMUNITIES | THE HUMAN RIGHTS SIDE
On the issue of non-disclosure, Golda educated that, “these things are human rights issues, and if the person is not ready to disclose, you cannot force the person to do that”
She added, the advantages of disclosure are many, if somebody knows and can support you. But it is a human rights issue and you cannot force people”
People have a right to not disclose, and the reasons might be logical but obviously the consequences of non-disclosure are much direr than disclosure.
The major reason is one of stigmatization. In the case of those living in rural a setting like Mangoase, the size of the village community is such that, once your status is known, chances are that the entire vicinity would get to know, and because of lack of knowledge about HIV, stigmatization is even worse.
Rev Azumah who has been living with the virus for close to two decades mentioned that, it got to a time where he and his wife considered relocating because the wife was selling charcoal and when their status was known, people stopped buying their product for fear of getting infected through the charcoal.
Under the Ghana AIDS Commission Act 2016, Act 938 Section 30 (1)
A person shall not disclose any information that concerns the HIV status of another person to a third party without the written consent of the affected person.
This law, compounds the issue of disclosing one person’s status to another even if they are married couples
LIVING WITH HIV IN RURAL COMMUNITIES | STIGMATIZATION
Golda, on stigmatization says, “There are some instances when persons living with HIV have gone to the hospital and will not disclose their status because when they do, they fear you may discriminate against him or her, except their regular counsellors or care givers who already know of their status. Apart from that, it is difficult to disclose to other people, so in one way, it is the stigma and we need to address issues of stigma, only then would PLHIVs easily disclose their status, we meet people with any other health condition who don’t feel shy to disclose what is wrong with them, you meet people who say they are diabetic, why is it that people don’t feel shy to say they are diabetic?”
She further stressed, “There are people who are HIV positive who would rather tell others they are living with Hepatitis B, so it is the stigma, if we as a society address the issue of stigma, people living with HIV would be bold to tell others that they are positive, but as a service provider, it is hectic managing a person living with HIV especially in an advanced stage who is not prepared to disclose their status”
LIVING WITH HIV IN RURAL COMMUNITIES | SCENARIOS
Haven’t listened to the tutelage, I pushed further to get scenarios of dealing with people living with HIV who are not prepared to disclose their status.
On this, Golda didn’t hesitate to mention that “I have dealt with persons living with HIV for even up to eight years and their partners were never aware, It is not the best, in an instance, the person was a trainer, and was living with HIV for five years, the wife was falling sick, and he would be sending the wife to hospital but never disclosed until I got wind of it and said, I would take a legal action against you because you are just waiting for your wife to die”
According to Golda, some form of force was exerted before the said trainer took the wife to the hospital, she was encouraged to take the HIV test, and then was discovered to have been infected. It was at this point that the man disclosed that he too was positive.
This according to many service providers “is heart-breaking, but that is the reality”
In another scenario, there have been instances where women have disclosed their status and their husbands run away, their husbands did not even think about also going to test if they are also positive.
Service providers tell me, “If the person is on treatment, then you don’t also want to force them to disclose because it is a human rights issue as well”
LIVING WITH HIV IN RURAL COMMUNITIES | THE VILLAGE CASE
Care givers interviewed about the situation in the village tell me, most women in the village setting don’t disclose because “they have heard of how some other women were treated when they disclosed, in some cases, those who disclose are told that they have gone to bring HIV to the family”
Because the woman has disclosed first, she is told that she “has gone to bring HIV and even though in some instances, it is possible that it is the husbands who infected them” and because such women don’t want to have any trouble, they keep their status to themselves.
What people don’t know is that, as part of preventing mother to child infection, the service providers are to ensure the protection of the entire family and children, prevention of mother to child transmission of HIV services is not only about the pregnant woman and the unborn child, it is also about ensuring that, once the women gets to know of her status, the husband should know as well.
In rural communities, a lot lies with the counselling skills of the counsellor, once the counsellor begins with, “tell your husband” and the woman decides not to, and they continue to have sex for two to three months, there are implications.
The counsellor then must move a step further to request that the woman invites the husband.
One of the methods that has worked has been the invitation to husbands to accompany their wives to antenatal so their wives are attended to ahead of other clients.
These according to care givers have been the methods that have worked.
The typical Ghanaian man according to service providers would not normally accompany the wife unless there is some incentive.
When they visit, a trained counsellor would not even tell the man that he is being tested for HIV, but would be told, it is a normal routine to test the two of them for a number of conditions, these too has worked.
Because of focus antenatal, the normal midwife has been equipped with some more skills however, caregivers have been quick to admit that they have not had it easy when the husbands are negative and their wives are positive.
The task then has been to educate the men to understand that when their negative wives are on treatment, the rate of transmission is reduced.
These fall under discordant conditions where one is positive and the other negative.
To succeed in managing people living with HIV in a rural setting, the challenge of non-disclosure can only be overcome if midwifes and other in-charges at the CHPS compounds are equipped with a lot more skills that average.
Since the Antenatal Clinics are a major entry point for testing services, the first 90 of the Agenda 90-90-90 would receive a boost if self-disclosure is done and if husbands are tested as well when it is discovered that their partners are positive.