By Samkelo Mahlalela | 2018-02-15
With the month of February dubbed “the love month”, the country’s response to HIV and AIDS stakeholders use it to promote the love test. During the month, the focus is ongetting couples to test for HIV and receive their post-test results together.
The month of February also has the International Condom Day, commemorated on February 13th, on Valentine’s day eve, providing a timely reminder about the importance of safe sexual health and relationships.
In the pursuit of the country’s Vision 2022 of ending AIDS and 90.90.90 Fast-Track targets, these two campaigns lay a great platform for the work that must be done in the year. As a reminder, to End AIDS, the global community is tasked with epidemic control by ensuring that new infections and AIDS-related deaths are reduced drastically through targets to get to zero.
This can be achieved through combination social, biomedical prevention and getting people living with HIV (PLHIV) diagnosed; on treatment; and g virally suppressed. The latter is commonly known as the 90-90-90 treatment goal to keep people alive and healthy enough to not transmit HIV. The catalyst to achieving this, is HIV testing.
It is important for all Swazis infected and non-infected to know their HIV status because many new HIV infections are caused by people who are unaware of their HIV positive status. Knowledge of HIV status enables HIV-negative individuals to make specific decisions that can reduce their risk of contracting HIV. In tandem, for those that are HIV-positive, knowledge of HIV status is just as empowering, it opens the door to access life-saving antiretroviral therapy (ART) and allows them to actively protect their sexual partners as well as to plan for their future. For HIV positive pregnant and lactating mothers, a course of ARV to reduce mother-to-child transmission in accordance with nationally approved protocols.
Cross sectional evidence informs us that being unaware of a partner’s HIV status confers an almost three to fourfold increase in risk in both men and women, compared to knowing one’s partner status, irrespectively whether they are positive or negative. This underscores the importance of status disclosure to one’s sexual partner. Disclosure is not only important to prevent new HIV infections but is also paramount in the management of HIV including relationships in general.The reality though, is that disclosure is not an event but a process – a tough and challenging one.
Disclosure of HIV+ status
Disclosure is a two-way process and relational in nature. When people have a reactive test, they are confronted with a dilemma – to keep one’s status a secret and avoid possible negative social consequences or to disclose to protect others and / or access social and material support. The desire to keep one’s HIV status a secret amidst care and treatment can easily lead to a “crisis in confidentiality”.
The disclosure of HIV positive status is a challenging issue characterised by numerous obstacles, varied approaches and mixed outcomes, and may involve the feeling of guilt, fear and worry. HIV positive status disclosure has many facets, from disclosing to a health practitioner and to one’s family and friends in communities and household.
Disclosure to health practitioners is important because it enables a patient to receive proper care and reduces duplication in receiving medicines for opportunistic infections and HIV - a situation which currently occurs since the country does not have a unique health client identifier. As a result, patients receive more than required medicines and huge costs are incurred by government, who procures the majority of ARV drugs. And this has not costed the cost of nondisclosure to households on rapid returns to health facilities.
Disclosure to family members
In practice, disclosure within families (even between sexual partners) is not as common as many healthcare workers may wish to be. In almost all cultures, the family is the agent of human development, a universal institution for child bearing, and a means of transfer of cultural and social norms, values and practices.
An effective family is essentially one that provides resources (food, clothing and shelter); nurtures and supports (emotional comfort); assists in the development of life skills (effective schooling and career selection); maintains and manages the family system; and provides sexual gratification of marital partners. Parents are expected to be moral exemplars but also expect to be respected. Children on the other hand, expect their parents to provide care, guidance and financial support.
Therefore, disclosure of parental HIV status to a co-parenting partner and child is a matter of time. When quizzed, the common response by most parents who have not disclosed is “Not Yet”, I or we are waiting for the right time for children, or child to mature. In truth though, many PLHIV fear losing their partners and as parents, fear losing their parental power over as well as respect from their children.
They fear that upon learning of their positive HIV status, some children may consider them as no longer capable of shouldering their parental responsibilities.
Then there is the idea that HIV infection is due to engaging in unsafe sex (deducedfrom reduction of sexual partners campaigns) motivates some PLHIV to avoid or postpone disclosure to their partners and children. Men and father sespecially, may be blamed for multiple partners and accused of sleeping around, endangering the lives of the very children they should protect, as well as that of their mother.
Yet, the need for social support dictates that PLHIV (as sexual partners and parents)disclose to their family because this may prompt their active involvement, as they can become valuable sources of support for them.
Parents disclosing to perinatally infected children
The difficulties parents face in talking about HIV and AIDS with their children are sometimes so overwhelming that many parents hesitate to inform their children about HIV in the family. The fact that every child is different, and every parent is different, means there is not necessarily a stipulated correct way of disclosing a positive HIV status – whether of the child or the parent. This is worse for the parent whose child has been infected by HIV from parent-to-child in pregnancy, delivery and breastfeeding. Or additionally through sexual violence like rape.
Though every child has a right to know, it is a parent’s decision to inform. There is however, understanding that disclosure poses challenges for the healthcare workers or the parent / caregiver of an HIV-infected child.
Then there is the belief that children are too young to understand matters related to HIV and AIDS, some parents want to avoid worrying their children, fearing that the knowledge will affect them psychologically.However, informing children of their HIV status is an important aspect of long-term disease management.
Depending on how well its done, it could help reduce the amount of anger seen in most children that after taking ART for eternity, in adolescence, find out why they take the daily life-saving medications. Because the reality is that many of those adolescents then rebel and stop taking ARVs, something that is detrimental to their health.
to the party
People that have disclosed their HIV+ status and are living openly with HIV, often need a support system outside of the family. This is where community-initiated support groups and their umbrella body, the Swaziland National Network of People Living with HIV/AIDS (SWANNEPHA) step in by providing community-based support groups of people living with HIV. The support groups play the important part of improving the community’s treatment literacy and helps them access available new models of care.
A recent discussion with Ms. Lindiwe Simelane from SWANNEPHA informed that SWANNEPHA was undertaking a mapping of support groups in the Shiselweni region– with Nazarene Compassionate Ministries covering the other regions.
The mapping exercise is aimed at identifying and revamping inactive PLHIV support groups in the country’s 360 communities so that they can be capacitated to effectively support treatment enrolment and adherence as part of the Network’s sectoral response programme. Currently, in the Shiselweni region, 222 support groups have been mapped out from eight of the region’s 14 (or is it now officially 16) Tinkhundla. These are supported by 21 community expert clients (CECs).
SWANNEPHA also has Change Agents placed in communities, who visit various homesteads (door-to-door) to deliver homebased care and educational information. These also support status disclosure and communication between HIV positive patients and their families.
The last mile
Despite the impressive amount of work that has been done by SWANNEPHA, NGOs, International Partners and government, the challenge is for more stringent efforts to get the PLHIV who are not yet tested, not on treatment and not virally suppressed, on board the Vision 2022 target and in line with the 90.90.90 targets. As the country works on the new Strategic Framework to get us to the “promised land”, significant effort should be on supporting families and perinatally infected children who are now adolescents and young adults to live better with HIV. In terms of human resource, there just may be need to invest in having more psychologists and social workers, to promote HIV testing and support for disclosure.
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