Dealing with confidentiality
All the participants stated that preserving confidentiality of patients' HIV result is emphasized during their training, and enforced in their counselling practice. They revealed that these measures maintain patients' trust in the health care system, facilitate HIV testing, and ultimately compliance to treatment and care. Although not all the treatment centres had clearly documented policies addressing confidentiality, the participants stated that a few cases of true breaches in patients' confidentiality had been reported to authorities and these were duly investigated and appropriate sanctions taken against the perpetrators.
"A few patients have complained that they have heard their results in the quarters and they did not know how it got there. The authority summoned the staffs who were accused by the patients and they were later sanctioned, and one was dismissed" (Female counsellor, 32 years old)
However, some participants mentioned that patients are often initially overwhelmed by the HIV diagnosis, and some may unintentionally disclose their status to friends and relatives but later accuse the health care providers for doing so. In addition, some mentioned that patients were generally reluctant to complain officially when they suspected that their confidentiality had been breached by staffs because they were apprehensive of reprisals. It was therefore difficult to properly investigate true cases of breach in confidentiality since such accusations from patients were only treated as rumours.
"So far we have heard rumours but nobody has come up officially to complain and because of that we have not done anything because we cannot address anybody....You know most of the patients are afraid to come up because they are afraid we might treat them badly after" (Female counsellor, 27 years old)
The participants stated that efforts have been made to address confidentiality within the treatment centres. They revealed that the hospital authorities regularly organise workshops and seminars for staffs where confidentiality is re-emphasized. Furthermore, some stated that only staffs directly involved in the management of patients have access to their medical records. Additionally, they mentioned that HIV results are documented with special codes as a protective measure from parties not directly concerned with the management of patients.
"Now there is a strategy we have put in place that HIV result of patients is not known to every staff who works in the unit. Only the counsellor and nurses in charge of that patient, and the doctor.... When the patient is sent to the lab, the lab test request slips are carried by the counsellor and the result is written with codes so that not everybody can understand" (Male counsellor, 33 years old)
Dealing with partner notification
Encouraging HIV-positive patients to disclose their status, especially to their sexual partners was an important challenge faced by the participants. They mentioned that despite the improvement in their counselling skills due to the trainings received and from their work experience, they still faced difficulties convincing some patients to voluntarily inform their partners about their HIV status. The major reason cited was fear of marital problems which included blame, verbal or physical assault, and even divorce. Based on the participants' experiences, the refusal to notify the sexual partners was commoner amongst male patients who were more likely to have been promiscuous prior to their diagnosis. They further had experienced that patients who disclosed their status were more likely to engage in safer sex, had better treatment compliance, and outcomes compared to those who concealed their status.
"I think from experience this is common with men and it is just because of their lifestyle. You know when they have so many women and finally when they become sick.... they will not want to tell their wives... so the ones revealing their status usually follow-up treatment very well. Some will not even use condoms with their wives because they don't want their wives to know they are HIV-positive" (Female counsellor, 48 years old)
The four positions taken regarding partner notification are represented in the positional map (Figure
1). The positions include the following:
"Respecting patients' autonomy is the benchmark of counselling" (position one);
"While safeguarding patients' autonomy, patients should be encouraged to disclose their status to their partners for family benefits" (position two);
"Protecting patients' sexual partners at risk is essential but counsellors should be legally protected" (position three); and
"HIV should be regarded as a chronic disease; testing and disclosure should be made routine" (position four). It is noteworthy that, although the positions are presented figuratively and in a somewhat linear manner, the participants' perceptions were not static. Many participants shared multiple views simultaneously and these seemed to change over time depending on the legal and ethical obligations at their disposal. The dynamic nature in their views highlights the complexities surrounding partner notification for HIV. It is also critical to state that positions one and two reflect the current counselling practices in partner notification for HIV in the region/country, while positions three and four are the participants' wishes for future policies.
Position one
The reflections in this position focused on absolutely respecting patients' autonomy as enshrined in the counselling training and professional ethics. This position was shared mostly by the fairly younger counsellors with few years of work experience. The participants declared that during counselling, patients are provided with the basic information about HIV, the benefits of testing and disclosing their status to their relatives, and regarding informed consent. Therefore, if for whatever reasons patients object to inform their sexual partners about their HIV status, it was not the counsellor's duty to do otherwise without the patients' consent. According to them, endorsing that counsellors should disclose patients' results to their sexual partners constitute a violation of their professional ethics which could attract undesirable consequences.
"No we cannot do that. That will be against our professional ethics because we are not supposed to disclose a patient's information without his consent. If we do that we might run into problems with the authorities [the hospital administration] because they will say we have breached confidentiality." (Male counsellor, 33 years old)
This position was also shared by a legal expert who stated that although the existing national laws have not been revised to specifically protect people living with HIV/AIDS (PLWHA) against discrimination, health care providers who disclose HIV-positive patients' results to their sexual partners without their consent could be prosecuted on the grounds of breach of professional ethics.
"In court that [notifying an HIV-positive patient's partner] can be argued in terms of breaching professional ethics because as you know ethically it is wrong to disclose your patient's result or diagnosis to third parties without that individual's consent. But to say in strict terms that there is an existing text with particular reference to maintaining confidentiality with regards to HIV-positive patients' results is a misnomer." (Male judge, 55 years old)
Position two
This position incorporates both safeguarding patients' autonomy and their partners' safety which is beneficial to the entire family. This view was generally shared by the more experienced counsellors. Although the participants who held this view acknowledged the importance of respecting patients' autonomy, they felt that it was their duty to also protect patients' sexual partners at risk of HIV exposure, and to enable them to seek prompt treatment if already infected.
"The law states that we should respect peoples' privacy or confidentiality...but I like to inform the partner because I know from experience that people who refuse to disclose to their partner will infect them....what if the wife comes tomorrow and is diagnosed positive?... It will be my fault because I did not inform her..." (Male counsellor, 35 years old)
The participants emphasized that their training and work experience have improved their communication skills and relationship with the patients immensely. They remarked that if counselling is properly done and much time spent with the patients to gain their trust, the patients would see the need for testing and subsequently informing their partners about their HIV status.
"When we started...most of us were inexperienced. We never knew how to present most of the things to most of the patients but with the trainings we take our time to give the best counselling to the patients so that they will not have misconceptions...it has made most of the patients to be understanding." (Male counsellor, 35 years old)
In contrast to position one where the participants felt that nothing could be done if patients object to notify their partners, the participants in position two were ingenious at devising strategies to encourage and ensure that patients willingly notify their partners. These strategies included the following: i) couple counselling, although they stated that some men were reluctant to participate, ii) continuous or ongoing counselling of recalcitrant patients, educating them on the benefits of disclosure, iii) seeking consent from the patients to directly inform their partners in the patients' presence in scenarios where patients lacked the courage to do so personally, and iv) contact tracing, whereby the counsellors obtained telephone numbers or physical addresses of patients' partners and could directly inform them about the possibility of exposure to HIV without releasing the identity of the index patient. However, some participants who regularly used the last approach acknowledged that contacting faithful partners in relationships could result in adverse consequences since the partners would definitely know the source of the exposure.
"One other thing that we have developed is contact tracing where those who are afraid to disclose to their partners we ask them to give us the telephone number of their sexual contact or contacts and we call the partner but we do not release their identity....The problem here is that if the partner has been faithful, she will definitely know that it is the husband who has infected her and it will cause problems in the house." (Male counsellor, 41 years old)
Position three
The focus in this position was on protecting the sexual partners at risk of HIV, and providing prompt treatment to those already infected since this will be beneficial to the entire family in the long run. This position, most often was shared by participants from the faith-based centres irrespective of their age and experience who incorporated morality issues when encouraging HIV status disclosure. They opined that upholding confidentiality in absolute terms was morally wrong, and patients who refused to inform their partners about their status were selfish by not considering the health and wellbeing of their partners. Although in favour of counsellors to directly notify the sexual partners of such uncooperative patients, the participants stated that they could not do otherwise because of the legal constraints.
To back this position, some participants stated that after all attempts to encourage voluntary disclosure failed; they occasionally 'threatened' their patients to make them notify their partners. Although they eventually respected the patients' autonomy, they claimed this measure was only used as a last resort to encourage voluntary disclosure.
".... if I try other measures and don't succeed, I will tell you that if you don't do it I will do it for you. When you do that many will not want you to be the one to do it. They will rather prefer to do it themselves....it is just a way of getting around because if they resist we will not do it." (Female counsellor, 48 years old)
The participants mentioned that in scenarios where patients refused voluntary disclosure, they were constantly in a dilemma between respecting patients' confidentiality and disclosing the status to their sexual partners. This was even more disturbing if they were acquainted with the patients' sexual partners
"I think it is different if you know the man is positive but you have never met the wife. In this case [the counsellor is acquainted with the wife] the woman came to you. What will you tell? A lie and then she will not trust you because she will discover it later on and it will be worse.... personally I will not sleep well." (Female counsellor, 33 years old)
However, they all acknowledged that in order for them to notify noncompliant patients' sexual partners, the government has to step in with a policy that legally protects health care providers against litigation.
"My proposal is that there should be a law or by law protecting the health professionals in such special cases that they have the right to protect partners for public health benefits." (Male counsellor, 27 years old)
A legal practitioner partly endorsed this position stating that sexual partners in a legal relationship deserve to know the HIV status of their partners. He therefore did not regard direct disclosure of HIV-positive patients' results by counsellors to their legal partners as a violation of the patients' autonomy.
"....It is your basic human rights for your results not to be disclosed to a third party but at the same time it also my basic human rights that I should know what you are sick of if you are my partner so that I can take care of myself if it warrants so. Therefore for you to refuse to disclose your status to me is a violation of my own human rights. There is a limit to privacy especially in a marital context because I see no violation in a partner's privacy if he or she is HIV-positive but refuses to disclose his result to the other partner and a health official does so to protect that partner and the entire family." (Male lawyer, 47 years old)
Notwithstanding, some participants acknowledged that endorsing partner notification by health care providers without the patients' consent could deter patients from seeking treatment. They further stated that it could lead to marital disharmony including divorce for which the counsellors would ultimately be blamed for by the concerned parties and society.
Position four
In position four, the emphasis was on addressing HIV/AIDS as any other chronic and treatable disease. This view was most commonly shared by male counsellors from faith-based hospitals. They mentioned that during the pre-ART era, recommending testing for HIV without offering treatment deterred testing. Following the scale-up of free life-time ART to all eligible persons in the country, there is the need to make HIV testing and disclosure normal and routine processes. According to these proponents, this measure will benefit many by prolonging peoples' lives and making them more productive in society. Although they acknowledged that such a policy would be difficult to implement, they suggested that it was an initiative worth considering in the not too distant future.
".....because the drugs are available now for free, I don't see why we should not consider it [routine testing and disclosure of HIV result] as in every other diseases like diabetes, hypertension where people come for check up every time and they also have to take their drugs for life." (Male counsellor, 33 years old)