The aim of this critical review of literature was to explore the benefits and risks of HIV diagnosis disclosure to perinatally infected children from studies conducted in Southern Africa. Seven studies were reviewed, six of them were carried out in African countries and one study took place in the United Kingdom, it was included because of its relevance for the review [20
]. Findings revealed that limited research has been carried out on disclosure of HIV diagnosis to perinatally infected children. The few studies findings indicate that parents have different opinions regarding this issue.
Several similarities and differences in findings were observed among the studies eligible for the review. The first theme, predictors to disclosure, emerged from the study by Biadgilign et al. [21
] and was common to three other studies in the review. The disclosure predictors included the child’s age, child’s knowledge of parent’s health problem, level of referral and parent’s level of education. It is possible that educated parents may not want to be associated with the disease because they consider themselves “better” than those with a low education. Sheik and Gray [27
] indicate that parents from rural settings are less likely to disclose HIV diagnosis to their child than parents from urban settings because, parents from rural settings lack HIV education and services, so negative attitudes about HIV are prevalent. This seems to contradict with Biadgilign et al’s [21
] findings. But, it concurs with Kouyoumdjian et al’s [25
] findings which indicate that parents from Soweto, a rural setting in South Africa, acknowledged that their lack of knowledge regarding HIV was a barrier to disclosure of HIV diagnosis to their children. It may be necessary to explore this further.
The review established that the age of the child is the strongest disclosure predictor with very few children less than seven years of age knowing their HIV status. However, disclosure rates vary from place to place and even from one group of people to another within the same place. For example, in South Africa, parents indicated 11 years as the best age to disclose to a child [22
]. In India, a study by Bhattacharya et al. [28
] revealed that the mean age at disclosure was nine. A study in South Africa by Myer et al. [29
] indicated that health care providers gave the age of six as the best time to start having general discussions with a child regarding their infection stating that at this age, the child is able to understand the concept of health and disease, and they start formal schooling and interact with other children. In contrast, parents in the same study gave the age of 10 or before puberty, as the best time to commence discussions with the child about HIV/AIDS because that is when they would understand difficult concepts of chronic illness. Apparently, health care workers may not find it very difficult to discuss HIV diagnosis with a six year old child because of their experience which parents lack. Parents may fear that the child will disclose to other people [15
]. Mellins et al. [30
] argue that delaying disclosure up to adolescence, poses a risk of the child transmitting the infection to others since he/she may be sexually active. In support of the notion Cecere, Scicchitano, Zito, Sassara et al. [31
] are of the view that multi-specialised team approach around the patient improves control of disease as the approach allows the possibility of individualized therapy based on clients’ real clinical condition.
] suggests that the best time for HIV infected children to be disclosed of their infection is from nine-ten years or older because, according to the theory of child’s cognitive understanding of illness, it is considered that this is when they are more likely to understand the causes of their illness and its consequences. Unfortunately, this statement is general; it does not take into account some differences. Every child is different; some children may not be ready for disclosure at age nine –ten and to some this may be late. For example, Kippenberg [3
] reported that a five year old child in Kenya asked her mother why she was taking medication daily when her siblings were not. This seems to suggest that this girl was ready for disclosure four years earlier than the age recommended by Arun.
The American Academy of Paediatrics [15
] recommends that disclosure discussions should be held with school aged children if they do not have cognitive defects. Likewise, children in different parts of the world start school at different ages, school age is not universal. Sheik and Gray [27
] argue that a child’s developmental readiness to understand the nature of HIV diagnosis and prognosis, determines whether disclosure to him/her takes place early or not.
Apparently, disclosure of HIV diagnosis also varies from one ethnic group to another due to cultural attitudes about HIV disease. For example, according to Mellins et al. [30
], Latinos tend to be more secretive about sexual and drug risk behaviours which contribute to HIV transmission, and so they may not discuss HIV diagnosis with their child. Similarly, in the Malawian context, culturally, parents/ adults tend to be secretive about sexual issues and discussing HIV with their child may be a challenge. However, Close [1
] highlights that healthcare professional’s play a big role in assisting parents with disclosure process.
Based on this, it might be argued that it is difficult to prescribe the specific age when disclosure of the child’s HIV diagnosis should begin because every child is different. It may be concluded that the child is the best determinant of this and parents should respond to the child’s needs accordingly. When the child starts to ask questions, it signifies that he/she is ready for discussions and parents should offer age appropriate information at that time, however, they may require help to do so.
Four studies in the review explored reasons for disclosure from parents. Findings indicated that parents had various reasons for disclosure of HIV diagnosis to their children. Moodley et al. [22
] reported that parents felt that the child had a right to know his/her condition, while some gave reasons related to the child’s mental well-being and the availability of ART as reasons for disclosure. Furthermore, Vaz et al.[13
] reported that some parents mentioned the child’s refusal to take medications, the child’s increase in age, deterioration of child’s health and to enable the child to make decisions regarding his/her medications and taking precautions to prevent infecting other people. Weiner et al’s [17
] study reported similar findings; that parents felt that their child had a right to know his/her health status, they feared that the child would engage in sexual activities without protection and hoped that the child’s knowledge of their HIV infection, would lead to more adherence to medication and improved health care. Kippenberg [3
] concurs with this and reports that many adolescents start having sex before learning about their status and risk re-infection and spreading the virus to other people.
The Convention on the Rights of a child stipulates that children below 18 have the right to health information [33
]. Likewise, the AAP [15
] recommends disclosure of HIV infection to children and adolescents. In Malawi, the Malawi HIV and AIDS National Policy states that people with HIV and AIDS should be aware of and take responsibility for protecting themselves from re-infection and protecting others from infection [14
]. This suggests that disclosure of HIV infection to children is considered important.
However, the studies also indicated that there were some parents who were against disclosure. Parents explained that disclosure might cause negative psychological consequences for the child, parents felt the child would be “having thoughts, thinking and thinking” and refuse to play with other children [24
]. Similar findings were reported by Waugh [23
], parents worried that the child would be upset about having HIV that they might suffer and die or might withdraw from society then commit suicide. This is worrisome because such children may reach adolescence without being disclosed of their illness and they might engage in risky behaviours resulting in re-infection and further transmission of the virus. It is important to realise that, it may not be possible to hide the HIV diagnosis for long, because as the child grows he/she may learn about the disease from the media, or from other people in a way which is traumatic. As indicated by Kippenberg [3
], a girl who was not disclosed of her infection stopped taking her medications after taking them for two days, when she overhead people saying that the medications she was taking were for people with HIV and AIDS. This is an example that a child is likely to learn of his/her HIV diagnosis regardless of parents keeping the diagnosis from him/her. In Kenya, Vreeman [24
] reported that parents feared that disclosure of HIV diagnosis may be potentially harmful to children as they may not be able to handle consequences of disclosure. In view of this, we suggests that parents’ reasons for resisting disclosure should be respected, furthermore, clinicians should explore the factors associated with the resistance and help parents to work on them.
The review revealed that parents expressed barriers to disclosure. Bikaako-Kajura et al. [26
] and Waugh [23
] reported that stigma was one barrier. Kouyoumdjian et al. [26
] indicates that fear of discrimination, being judged as promiscuous, social rejection, isolation, being associated with gay disease, inadequate knowledge about HIV and finding disclosure psychologically and emotionally challenging are barriers to disclosure. Furthermore, Waugh [23
] reported that parents feared that their child would know how he/she got infected and would get upset and hate them. This seems to suggest that stigma was the main barrier to parents’ disclosure of HIV diagnosis to their child.
According to Close [1
], stigma surrounding HIV started with the association of the infection with homosexual men and intravenous drug users. The media started to refer to HIV as the “gay plague” which led to people associating HIV with immoral behaviour such as sexual promiscuity and intravenous drug abuse. Considering the circumstances through which HIV is transmitted to a child, parents may fear that their child would perceive them as immoral. Stigma leads to an environment of secrecy in a family; unfortunately, the child senses the secrecy through observing how parents interact with other people and how they discuss or avoid discussing the topic in his/her presence and becomes aware of parents’ feelings towards his/her illness and this increases stigma. Therefore, we suggest that educating communities, parents and children infected with and affected by HIV and AIDS may be of importance in supporting families.
The study by Vaz et al. [13
] explored how parents prepared their children for disclosure. Findings revealed that parents prepared the child’s favourite food, bought gifts, made the child feel loved, prayed, talked to a doctor and some planned answers to anticipated questions. This suggests that parents felt that considering the nature of the infection and the circumstances under which a child contracts it, preparation for disclosure is necessary. The American Academy of Paediatrics [15
] suggest that disclosure should be planned and discussed between parents and healthcare professionals and may require a number of visits to the clinic to assess the child’s knowledge and ability to cope.
Human Rights Watch [34
] suggest that parents and a health care professional should make a disclosure plan taking into consideration:
• Child’s age, intellectual ability and developmental understanding of HIV and prognosis.
• What the child has already been told.
• What he/she knows about medication and hospital visits?
• Child’s health.
• Other disclosures for example, parent’s HIV diagnosis.
• Parent’s thoughts about disclosure.
• Cultural influences.
• Family social circumstances.
• Child’s anticipated response.
• Type of support available to child and parents after disclosure.
Furthermore, it is suggested that the child should be assessed on his/her school performance, family and peer relationships and support, interests, activities, mood and behaviour pre and post disclosure. Likewise, Sheik and Gray [27
] suggest that disclosure of HIV diagnosis to a child should be planned and done in a loving and reassuring manner. This shows that disclosure of HIV diagnosis to a child is not a “one off” event and requires special preparation rather than merely giving gifts or favourite food to a child.
Parents reported various outcomes regarding their decision to, or not to disclose the HIV diagnosis to their child. Biadgilign et al. [21
] reported that parents who disclose the HIV diagnosis to their children reported being discriminated and stigmatized. Bikaako-Kajura et al. [26
] indicated that parents who reported the child’s adherence to medications had supportive and trusting parent-child relationship and the child’s ability to seek ways to deal with stigma. In contrast, those who did not disclose to their child reported having to force or bribe their child to take medication. Furthermore, Vaz et al. [13
] indicated that children who were told of their HIV diagnosis reported that it was important for them to know since it helped them to stop worrying and be able to protect others. Likewise, the Human Rights Watch [34
] indicates that older adolescents, who are aware of their HIV diagnosis, can choose to use protection during sex and other risky behaviours, are able to participate more actively in the treatment and are more likely to adhere to ART, learn about their infection in a supportive way making them to be more self -confident and they learn that it is acceptable to talk about HIV, helping them to address stigma associated with the infection.
We strongly suggest that disclosure can be beneficial and may reduce harm by reducing anxiety and facilitate addressing worries, because fear of unknown can be greater than fear of a known illness. Besides, disclosure may facilitate psychotherapy, since HIV can be discussed openly and directly, and, a child’s knowledge of his/her infection may enable him/her to cope with the disease and possible fears of death from HIV. Sheik and Gray [27
] emphasize that disclosure enables parents and their child to cope and support each other, increases intimacy between parents and their child hence strengthening family ties, relieves parents of the burden of keeping secret and anxiety of possibility of accidental disclosure, forms an essential part of good health, indicates parents’ respect of their child regarding his/her rights, empowers the child to participate in their health care which increases hope and enables choices regarding self-protection. In contrast, Ayebale [35
] indicates that nondisclosure prevents HIV infected children from getting appropriate and timely support. According to Kiltzman et al.[36
] HIV infected youth who have not been disclosed of their diagnosis may experience anxiety and related emotional and behavioral problems.
We acknowledge that there are positive and negative outcomes to disclosure of HIV diagnosis to a child, but it is important to carefully examine how disclosure may benefit a child and how the negative outcomes may be worked out to help the child live as normal a life as possible within the circumstances of the condition.
Three studies in the review revealed that parents who did not disclose the HIV infection to their child told him/her an inaccurate diagnosis; for example, that they had an inoperable disease, tuberculosis or heart problem, whenever the child asked questions regarding medications or hospital visits. However, as indicated earlier, despite the secrecy, children become aware of the nature of their illness, unfortunately, sometimes this occurs in a traumatic way. This concurs with Mellins et al.[30
] who report that two children knew about their HIV infected through a television HIV/AIDS programme, the children learnt that the daily medication they were taking is for people with HIV infection. Upon learning this, one of the children told her sibling: “I have AIDS or HIV but don’t tell mum and dad because they don’t know that I know” (p.92).
This suggests that children who are not told of their HIV infection are aware of it, and sense that they cannot discuss it with their parents openly.
Five studies in the review investigated who should disclose to the child his/her HIV diagnosis, and parents gave different responses. For example, Biadgilign et al. [21
] indicated that parents preferred the doctor, family member or social worker to disclose to their child because of the experience these people have. Some parents may prefer someone to disclose to their child because they feel guilty for infecting him/her, others may fear that their HIV diagnosis will be known by the child and other people, since the child’s HIV infection indicates that they too are infected. Waugh [23
] indicated that some parents felt they were the right people to disclose to the child. These findings indicate that there are some parents who prefer disclosing the HIV diagnosis to their child at a certain age, while others prefer telling him/her an inaccurate diagnosis. Both groups have their reasons for doing so. However, those who prefer disclosing the HIV infection to their child also have varying recommendations regarding who should disclose to the child.
This review has strengthened knowledge regarding disclosure of HIV diagnosis to perinatally infected children. It has also shown that parents’ concerns regarding disclosure of HIV diagnosis to their children, in African countries where the studies were conducted, are shared by parents in other parts of the world.