Introduction

Globally, paediatric HIV infection continues to be a major problem. Approximately 3.3 million children younger than 15 years are living with HIV, with 2.9 million of them in sub-Saharan Africa [1]. In Uganda, just over 7% of the adult population and about 1% of children less than 5 years are HIV-infected [2]. There has been considerable progress in recent years towards making comprehensive HIV treatment accessible to children in Uganda; paediatric antiretroviral therapy (ART) services have been scaled up to over 300 health facilities throughout the country. With increasing availability of accessible, effective combination ART, paediatric HIV has been transformed from a rapidly fatal infection to a chronic disease requiring complex lifelong treatment and support [3].

The increasing survival of perinatally HIV-infected children into adolescence and adulthood has brought to the fore new and important challenges relating to adherence to long-term treatment, as well as development issues including, among many, peer relationships, puberty, and sexuality [4], [5]. The issue of HIV status disclosure - whether, when, and how to inform HIV-infected children about their HIV status - has gained increased attention in recent years [6], [7].

Disclosure of HIV status is one of the most complex challenges facing individuals who live with HIV/AIDS. It entails communication about a highly stigmatized, life-threatening, transmissible and, currently, still incurable infection. It is usually approached with much anxiety and fear of negative consequences, notably stigmatization and discrimination, and is often avoided altogether [8]. Although unintended disclosure may occur, HIV-infected adults typically make a choice to disclose their status to others. The motivation to disclose and the immediate consequences of disclosure are viewed from the affected individual's viewpoint [9].

The disclosure process in paediatric HIV is more complex and less well understood. In children, the process involves consideration, by the caregiver, of the child's developmental and emotional readiness to receive the information about his/her HIV status, as well as attitudes and motivations/goals of the caregiver and/or health worker towards disclosure [9], [10]. Caregivers and healthcare workers are presented with many challenges around disclosure, including deciding what is in the child's best interest and when, why, and how much information about his/her HIV status should be shared with him/her [11].

The World Health Organization and national paediatric HIV guidelines [6], [12] recommend developmentally appropriate HIV status disclosure to adolescents and school-age children. The WHO made the strong recommendation that children of school age should be told their HIV positive status; younger children should be told their status incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure [13]. Expected benefits of disclosure include enhanced access to support services, better treatment adherence, improved family communication, and better long-term health and emotional well-being for the child [14], [15]. Reports generally indicate positive outcomes associated with disclosure in children, although stigma and depression have been reported, especially in the short-term [16]-[19].

However, current data from resource-limited settings show typically low rates of disclosure to children, ranging between 10–38% [7], [18], [20]–[22]. In a recent study conducted in the Mbarara Regional Referral Hospital in Uganda, caregivers reported that only 31% of children between 5 and 17 years had received full disclosure of their HIV status [23]. A much smaller proportion (about 7%) of children was classified as receiving partial disclosure, despite being within the age range for which initiation of the disclosure process is recommended. Additionally, because disclosure of perinatal HIV is generally delayed until late childhood or adolescence, children usually receive ART for long durations of time before the reasons for this prolonged therapy are fully discussed with them.

Reasons for these low rates of disclosure are not fully understood. In studies mainly from the developed world, caregivers cite a belief that the child is either not old enough or not ready [24], [25] or is not sufficiently mature to understand and/or cope with the diagnosis [26]; concern that if they disclosed, their child would not keep the diagnosis private; or worry that children would be exposed to ostracism and negative reactions from community and family [24]–[26]. Some HIV-infected mothers have reported the concern that their child will be angry with them for transmitting the virus [25]. Further research is needed to understand the disclosure process in low resource settings.

Moreover, few interventions to support disclosure are available and are limited to developed settings. Further data is needed to develop effective, locally appropriate HIV disclosure interventions that can be used to facilitate and support effective and beneficial disclosure in developing settings. Such interventions require an understanding of the disclosure process, including factors that affect the likelihood and the outcomes of disclosure, as well as the drivers of caregivers' decision-making towards disclosure (or concealment) of HIV status to children under their care [9]. This study examines caregivers' perception of the disclosure concept prior to disclosure, their motivation towards or away from disclosure, and their short- and long-term intentions for disclosure to their HIV-infected children in a rural Ugandan population.

Methods

Results

Description of participants

A summary of the main characteristics of the participants is presented in Table 1. Overall, 44 eligible caregivers were approached to participate. Four caregivers declined because of time constraints. Forty caregivers were interviewed, 33 of whom were the HIV-infected biological parents (32 mothers and one father) of the children for whom they cared. The rest were HIV-uninfected or untested. All except one were females, and 31 of them were receiving ART. Most HIV-infected caregivers reported having disclosed their own status to someone in their family or community. The majority of children were between 5 and 10 years, and more than 75% were receiving ART at the time of the study.

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Table 1. Characteristics of caregivers and children (n = 40).

https://doi.org/10.1371/journal.pone.0093276.t001

Key themes

Five major themes were identified (Table 2): 1) Caregiver understanding of the concept of HIV disclosure, 2) Caregiver attitudes, motivations, and goals for disclosure, 3) Avoiding disclosure, 4) Coping before disclosure through deception, and 5) Intentions for disclosure.

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Table 2. Summary of categories/themes.

https://doi.org/10.1371/journal.pone.0093276.t002

Discussion

In this study of caregivers in a rural Ugandan setting, we found that most perceived disclosure as a single momentous event of truth-telling that is usually preceded by a period of sustained avoidance and deliberate deception. Caregivers generally viewed disclosure as potentially beneficial to children and expressed a desire to derive a wide range of anticipated benefits, particularly improved medication adherence and better self-care, for their children through a properly timed and managed disclosure. They also viewed it as an opportunity and framework for accounting to the children for their own responsibility in the children's infection. However, most were preoccupied with fear of negative outcomes and did not feel able to disclose well. It was therefore easier for them to avoid disclosure even when presented with clear opportunities to tell.

Because children typically receive ART for a long time prior to disclosure and must develop sufficiently to understand their diagnosis, unique challenges arise that are best handled through a gradual disclosure process. World Health Organization and national guidelines recommend that disclosure consist of a gradual process in which information is delivered in a graded manner appropriate to the child's development. The child is given some, but not all, the information about their illness. The child may be told that he/she has a disease that is described in a way that is consistent with HIV/AIDS, but the disease not necessarily mentioned by name [10], [30].

Caregivers in this study, however, perceived disclosure in a way similar to the post-test disclosure one would get with a first test for HIV. This finding reveals a lack of understanding of the concept of partial disclosure and suggests that children might be brought very quickly from a position of no disclosure to full disclosure. This phenomenon has been reported before; a qualitative study of 12 children in the Democratic Republic of the Congo who had received disclosure found that almost all children interviewed reported receiving their disclosure information through a single conversation with neither preparatory nor follow-on discussion after the event [19]. This approach is unlikely to be satisfactory, as it requires the child to absorb too much information, including reconciling the new knowledge with prior misinformation. Without the benefit of follow-on discussions to address questions and concerns, children could develop feelings of confusion, isolation and depression. Nonetheless, most caregivers independently described their understanding of full disclosure appropriately, even before hearing the interviewer's definition of essential components. This finding suggests that they may not need more counseling on the components of disclosure, but more on how to do it as a process.

We found that caregivers had important positive goals for disclosure including improved adherence to medication, better parent-child relationship, and community protection. Disclosure was, however, avoided because of a range of fears. Fears of negative emotional reactions by the child were similar to what has been reported in other studies [15], [22], [31], [32]. These fears are perhaps not entirely unexpected. The vast majority of caregivers interviewed were themselves HIV-infected and had real-life experience going through the process of testing and learning for the first time that they were HIV-infected. This experience might have informed their expectation that receiving news of their HIV status would be distressing for the child.

Fears of negative emotional reactions are reinforced by a fatalistic view of HIV/AIDS in the community, media, and health education programs in school. As reported in other studies [33], [34], caregivers feared that children would live in constant fear of dying once they were told they had HIV. However, such fears of adverse outcomes may be unduly exaggerated. Data from studies of the psychological impact of disclosure in children generally suggest that although some may experience some negative reactions initially, these are usually followed by more positive feelings of relief and empowerment [17], [19], [35]. Overall rates of depression, emotional and behavioural problems, for instance, are not higher among children who have been informed of their HIV status [26], [34], [36]. Helping parents understand this fact early may help mitigate these fears and get them to feel more positively about the prospect of disclosure.

Previous studies have reported that disclosure may be especially difficult for HIV-infected biological parents of HIV infected children [37], [38], primarily due to feelings of guilt and fear of blame [25]. This study confirms this finding, but also suggests that concern about distressing the child, particularly for parents who may have experienced significant emotional distress following post-test disclosure, may play a significant role.

One fear frequently cited as a reason for delayed disclosure in previous studies is that HIV-infected caregivers fear revealing their own HIV status, and the attendant concern that the child might not be able to keep the diagnosis a secret [20], [22], [35]. Our data concurs, partly, with this finding. However, even caregivers who are open about their own HIV status can have difficulties disclosing their child's HIV status. In this study, a significant number of HIV-infected parents reported having disclosed their own status within their family and community and in some cases to the HIV-infected child in question. For these parents, at least, the delay to disclose may be more likely due to a genuine desire to protect the child from distress rather than a need to preserve secrecy of their own HIV status.

Caregivers are often presented with opportunities to begin the disclosure process, mostly when children begin questioning the need for taking regular medication. However, as a strategy to cope with fear they may deflect questions about HIV. This practice may be more pervasive than has previously been reported [10]. In our study, almost all caregivers indicated that they had told their children a lie when confronted by questions about the child's HIV status. Their justification of it and the expectation that they would continue until they felt ready for disclosure highlights the fact that, for many caregivers, pretense is a major strategy for coping through the pre-disclosure period. Unfortunately, some of the lies might make future disclosure more difficult. Interventions to support caregivers through disclosure should aim to provide viable alternative strategies for managing the pre-disclosure period and support caregivers through a managed process of partial disclosure.

Ultimately, whether and when disclosure happens will depend not only on caregivers' goals and desired outcomes, but also on their ability to act on them. Dematteo and others have argued that, for disclosure of the child's HIV diagnosis to occur, adult caregivers have first to trust in their own readiness and competency to disclose [39]. Our data revealed a lack of self-efficacy among caregivers; most felt that they lacked the skill to adequately communicate with their children about their HIV status and to deal with the anticipated negative reactions. Similar to other studies, caregivers frequently anticipated a need, and expressed a desire, for professional support when the time for disclosure comes [19], [33], [40], [41].

Despite concerns about lack of ability to act independently, most caregivers still prefer that the parent or primary caregiver should be the one to disclose to children under their care. They perceived disclosure as a responsibility the caregiver holds to the child, and they see an opportunity to be accountable to their children and to foster a closer relationship of trust. Interventions to promote disclosure in this population should recognize caregivers' desire to personally conduct the disclosure process and offer support to help them overcome the barriers that hinder them from acting on this desire.

Considering caregivers' stated desire for guidance and support by health workers through the disclosure process, it is important that health workers are trained and supported with appropriate guidelines. Typically, this type of care is not routinely available in settings like this one. Even though most HIV-infected caregivers had disclosed their own status within their family or community following encouragement by health workers, they had received no specific support through the process. The suggestion of a possible role for peer counselling for the caregiver in preparation for disclosure, and the caregiver/child dyad during and after disclosure, offers potentially interesting implications for programs to support disclosure in this setting. Peer counsellors have been used to support HIV programs in African settings, particularly HIV prevention and treatment programs, with some success [42], [43].

A major strength of this study is the depth of the interviews, which explored not only the caregivers' conceptualization of disclosure, but also their motivation, intentions, and barriers with disclosure. The study focused on caregivers who had not disclosed and thus allowed an exploration of caregivers' desires and needs prior to disclosure. This study also had some limitations. Because participants did not include caregivers who had disclosed, the study does not present comparative data that could have helped identify possible facilitators of disclosure among caregivers in similar circumstances. However, the exclusion of caregivers who had disclosed was deliberate; we sought to focus on antecedent attitudes and goals of disclosure among those caregivers who might be having difficulties with disclosing. We also included caregivers whose children were relatively young and who may therefore not be developmentally ready for disclosure; however, WHO and national guidelines suggest beginning the disclosure process even at this young age. The majority of participants in this study were biological mothers; opinions of other types of caregivers may vary. Furthermore, the study was restricted to caregivers of children who were plugged into care. Further work is needed to explore perspectives of families not receiving formal care and treatment. Studies exploring the perspective of the HIV-infected child would also provide additional insight into this important issue.

Conclusions

Caregivers of HIV-infected children mainly perceive disclosure as a single event rather than a process of gradual delivery of information about the child's illness. They anticipate a range of potential benefits to the children, as well as an opportunity for caregivers to clarify that they transmitted the virus to the child. However, most are over-whelmed with fear of negative outcomes, and reveal a lack of confidence to independently manage the disclosure process. Consequently, most did cope by deception to avoid (or delay) disclosure until they perceive readiness to disclose.

The results of this study have implications for future development of interventions to support families through disclosure-related communication. Such interventions should recognize caregivers' desire to disclose to children under their care, and the barriers that hinder them from acting on this desire. Caregivers should be empowered with practical skills to recognize opportunities to initiate the disclosure process early, and supported to manage it in a developmentally appropriate manner. Health care providers need to be equipped with skills and appropriate guidelines to be able to guide and support families towards satisfactory disclosure. The potential role for peer counselors in supporting caregivers and families through the disclosure process deserves further study.

Acknowledgments

The authors wish to thank the participants and staff of the HIV clinic, as well as Christine Tumuramye who assisted with the interviews. They are also grateful for the advice given by Sheana Bull, PhD from the University of Colorado, in the preparation of the manuscript. All data in this manuscript will be made available to interested individuals upon request to the corresponding author.