The disclosure of HIV positive status is important for coping with the disease and understanding the circumstances surrounding it. It is equally critical both in preventing HIV and mitigating its impact (Varga, Sherman & Jones, 2006). These scholars identify four forms of disclosure. These are voluntary, involuntary, direct and proxy disclosure. Each of the forms are described thus:
…voluntary disclosure denotes divulging one’s HIV status through a decision made without coercion whereby an individual is in control of when, how and to whom disclosure takes place. Involuntary disclosure is a situation where HIV status is revealed without the individual’s consent. Direct disclosure refers to a situation where an individual does a straightforward divulging of their HIV status. Proxy disclosure is when an action or association directly suggests one’s HIV status without it being openly articulated (Varga et al., 2006, p.952).
The following sub-sections will look at scholarly views of disclosure as they relate to the partner, children, in-laws and friends, as it is believed they form an important part of the socially close- knit African setting.
41 Disclosure to partner
Disclosure is considered critical for carrying out fertility intentions and preventing HIV transmission, as well as reducing risk behaviours, and increasing adherence to medication. In addition, disclosure serves as motivating a partner to go for voluntary counselling and testing.
These views are expressed by Zamudio-Haas et al., (2012) as well as Houwer, Barnes-Holmes, and Moors (2013). At the same time, the disclosure of HIV positive test results to one's sexual partner, however, may pose a challenge, particularly if the anticipated reaction of the recipient is negative. Furthering this view Monsin, (2012), Tallis, (2012) and Zamudio-Haas, Mudekunye- Mahaka, Lambdin, et al., (2012) mention the factors that can exacerbate this challenge. These factors range from the fear of being rejected and/or being accused of bringing the virus into the home; stigma, unstable relationships, verbal abuse and harassment. Other scholars add the element of fear of becoming divorced or separated (Baumgartner, 2003; Maman, Mbwambo, Hogan, et al., 2003; Ostrom, Serovich, Lim & Mason, 2006; and Obiri-Yeboah, Amoaka-Sakyi, Baidoo, et al., 2015).
Deribe, (2008), notwithstanding, stresses the importance of disclosing one’s HIV positive status, highlighting its benefits such as that:
a) it allows the partner to engage in preventive behaviours; b) it enables access of necessary support for coping with a seropositive status or illness; and c) it motivates partners to seek testing or to change sexual behaviour, in a way that ultimately decreases the transmission of HIV (Deribe, 2008, p.1).
Building on the views as expressed by Deribe, (2008), Obiri-Yeboah, et al., (2015) brings in the element of ensuring adherence of clinical care and ARV therapy by the infected partner. In addition, Elopre, Westfal, Mugavero, Zinski, et al., (2016), in their study to establish the level of adherence to ART at a clinical level for disclosed and non-disclosed patients, identified benefits of disclosure as facilitating a patient’s ability to deal with the initial confusion and despair and also to prepare for emotional and practical support received from the family, when one discloses one’s HIV positive status to them.
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In trying to ameliorate this fear that exists about partner disclosure especially in the case of women, Obiri-Yeboah et al., (2015) identify strategies and procedures for disclosing, suggesting the use of health facilities as settings and peer counsellors as semi-professional structures that assist with the disclosure process.
In spite of the fears that have been mentioned above, the research supports the notion of disclosure of one’s HIV positive status to one’s partners for gaining the aforementioned identified benefits. There is another level of disclosure that is key within familial relationships.
That is when making disclosures to children. The section below reviews scholarship on disclosure to children.
Disclosure to children
Disclosure of HIV positive status to children has attracted debates around two key issues.
The first issue is concerned with the appropriate age of the child when disclosure needs to take place, and the second issue is whether or not disclosure should even be done by the parent to their children. I have divided this section into these two issues and have identified research that looks at each of the views.
Debates about appropriate age for disclosure to children: The following scholars, Pope and May, (1995); Lachman, (1997); Marshal, (2005); Kennedy, Cowgill, Bogart et al., (2010); and Houwer, Barnes-Holmes and Moors, (2013), provide options for mothers to decide when; and at what age and how they will disclose their illness to their children. They do acknowledge however the complexities and challenges of disclosure to children. In addition they acknowledge that the parents’ fear that comes with disclosure (the psychological burden of shock and stigma) may make it difficult for children to bear but do stress the need for parents to disclose their HIV status to their children, in spite of this.
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In terms of age, the child’s level of understanding and maturity level were found to be key considerations. In a study conducted by Gachanja, Burkholder and Ferraro, (2014) about the age for disclosure, parents expressed that children developed and matured differently, thus the decision to fully disclose, needs to be assessed on an individual basis. In terms of age, parents suggested a minimum of five years of age and above, as the appropriate age at which disclosure can begin to happen. The reasons the parents give for this range from the realisation that while disclosure to a child was important, it should be done in stages to enable children to absorb the news, with less negative impact, and in that way they will not forget what they have been told.
Another key debate in this section is whether children need to be informed of their parents’
HIV positive status. Several scholars emphasise the need for parents to disclosure their HIV positive status to their children. For instance Murphy, Roberts and Hoffman, (2003);
Tompkins, (2007); Kennedy et al. (2010); and Gachanja et al., (2014) are in agreement that children need to be informed about their mothers HIV positive condition. They provide various reasons for disclosure. Some of the many pathways through which a child can learn that his/her parent is HIV positive are from a member of the family or a non-family social network or through observing behaviours and symptoms that indicate a serious health problem with the parent. If a child knows his/her parent’s HIV status, in that way, there are high possibilities of mistrust between a mother/parent and a child. Murphy et al. (2003) put emphasis on the need for parents to disclose their HIV positive status. Talking about the possible dangers of delayed or lack of disclosure, they opine that, while it may stay as a secret, it will be for a limited duration as:
…children may guess the secret or it might be revealed by someone else or might reveal it in a moment of stress, which would deprive mothers the opportunity to plan their disclosure to make its delivery as supportive as possible (Murphy et al., 2003, p.308).
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Tompkins, (2007) in stressing on the importance of disclosure to children, indicates that it not only decreases parental distress associated with keeping a secret and hiding health seeking behaviour; it also decreases distress in children, related to living with an unnamed illness, and it also improves communication. He, however, cautions about factors such as the age of a child; the child-parent relationship and the general cultural influences such as how the child relates to other family members – how informed the child is about HIV and AIDS lest he/she reacts in a negative manner towards the infected mother. These factors, Tompkins, (2007) highlights as key prior to HIV disclosure.
Tompkins, (2007) presented his views about parental disclosure to children and he identified the close connection between the disclosure and social class structures. The lower the social class of the mother, the more likely Tompkins, (2007) claims, that the mother will disclose their HIV positive status. He established this linkage himself basing it on the practical limitations of the lower social classes, such as the lack of privacy and inadequate child care;
arguing therefore, that parents may feel more obliged to share their HIV positive status with their children. Tompkins indicated that women seem to be more comfortable disclosing the status to their daughters, than to their sons, and he attributes this preference to the fact that there are higher chances of reaping more benefits. One of those benefits is that daughters might take on an increased responsibility for attending to household chores when their mothers are ill.
Tompkins’ assumption of disclosure is based on the notion that mothers may not be so concerned per se, about whether or not their HIV positive condition will remain a secret, all the mothers are concerned about is the provision of both the emotional as well as the instrumental support, so that they do not feel alienated by their HIV diagnosis.
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Hayes, (2000) study about women’s disclosure to their children revealed that women who disclosed did so for a number of reasons. Key among them were: a) wanting to be the ones sharing that information; b) the child’s right to know; c) not wanting to keep it a secret; d) child maturity; e) as a way of demonstrating or soliciting emotional support; and f) to respond to some of the child’s daily inquisitiveness about the mother’s sickness.
Kennedy et al., (2010) further advised that as where disclosure seems a difficult process, parents need to find an appropriate person or professional who should make the disclosure on their behalf, as may be needed.
There is however a different view that has been expressed by Ostrom et al., (2006) in the study they conducted there where parents that felt that disclosure to the children was not appropriate. This was in keeping with the notion of as “carefree a childhood as possible, that is, not wanting the child to worry about the mother and not wanting the child to be hurt by the reactions of others” (Ostrom et al., 2006, p.62).
These views were expressed by mothers who experienced HIV-related stigma and who did not want their children to go through similar ordeals. For those who reported not having disclosed their seropositive status, the reasons advanced were that: a) mothers did not want to scare their children; b) they wanted their children to live a carefree life; c) the age of the child was a barrier; d) there was fear of the child becoming angry with the mother; e) fear of losing the respect of the child; f) fear of the child owning the diagnosis as their own and g) fear of the child not keeping it a secret.
This literature is relevant to my study, as most of the Women living with HIV and AIDS in this study have had children and have faced the question of “if, when and how” to disclose
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their status to their children. Within the familial ambit, are the in-laws of the women whose views are pertinent in this case study. The literature about disclosure to them is relevant.
The section below presents the scholarly views about the in-laws.
Disclosure to in-laws
Disclosure, as viewed by Zamudio-Haas et al., (2012) especially if negative reactions from the male marital partners are encountered, often includes the issue of disclosing the female marital partner’s HIV status, to his family members. In their study conducted in Zimbabwe about the reactions of in-laws to an HIV positive daughter-in-law, some of the statements that the in-laws make to their sons were:
…how can you stay with a snake in your house? Leave her at the roundabout close to the taxi rank, she will figure out where to go… Zamudio-Haas et al., (2012, p.21).
UNAIDS collection of essays and reflections of women living and affected by HIV under the heading, “When health care becomes an act of violence”, claims that women in Southern Africa (Namibia) reported incidences of trauma, physical abuse, stigmatisation and discrimination suffered at the hands of their in-laws, especially the mother in law (UNAIDS, 2014). The women reported that they were being accused by their mothers-in-law as ‘witches’, they are being shouted at and even being accused of bewitching their sons. WHO (2004, p. 19) however does make assertions on the importance of disclosure to the mother-in-law which they say is associated with increased social support, while a disclosure to father-in-law is more rare and generally occurs with disease progression. The issue of father-in-law becoming angry or withdrawing after disclosure is also mentioned as occurring. Having viewed scholarly views about disclosure and the reactions of the in-laws, this study now looks at disclosure and the reaction of friends.
Disclosure to friends
Disclosure to a friend is particularly influenced by the strength of social networks and the level of the relationship, at the time of disclosure. This view is expressed by Hult, Wrubel,
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Branstrom, Acree and Maskowitz, (2011). Friends’ support upon disclosure is witnessed by Lee, Harris, Harper and Ellen, (2015) in their study about HIV positive youth disclosure to their friends. The responses from the study pointed to the fact that friends and family members continue to socialise with HIV infected youth after disclosure. That level of acceptance of their status gave them a higher level of perceived social support.
The literature about disclosure to friends is relevant in this study as the women interacted with a number of people during their HIV positive journey of coping with their condition.
Having reviewed scholars’ perspectives about HIV positive status disclosure to various groups, the next section looks at what scholarship says about HIV treatment enrolment.