Socio-Cultural Influencers of Disclosure of HIV Status to Children on Antiretroviral Therapy in the Masaka Region,Uganda: A Qualitative Study

Abstract

This study explored sociocultural influencers of disclosure of HIV status to children taking daily antiretroviral therapy (ART) in the Masaka region, Uganda using data collected from 26 key informant interviews with caregivers between October 2020 and July 2021. The findings revealed both positive and negative sociocultural influencers of disclosure. Beliefs that disclosure cultivates responsibility in the child to improve ART adherence and the culture of routine sexual health education conversations with children were positive socio-cultural influencers. Beliefs that disclosure increases children's loss of hope in life and breaks confidentiality with children inadvertently disclosing their HIV status to others leading to discrimination and social rejection, were key negative sociocultural influencers. These findings suggest a need for socio-culturally informed interventions that target caregiver negative socio-cultural disclosure influencers in this setting through contextualized sensitization and training to prepare children taking daily ART to receive disclosure progressively.

Keywords

HIV disclosure influencers children antiretroviral therapy sociocultural

Introduction

In 2019, the United Nations International Children Emergency Fund (UNICEF) reported that there were about 2.8 million children aged 0– 17 years living with HIV in the world.¹ Seventy-five percent of these children were living in less developed settings (United Nations Joint Program on HIV/AIDS).² Sub-Saharan Africa (SSA) accounted for 90% of the 75% of children living with HIV in poor and middle-income settings.² In Uganda, 96,000 children are currently living with HIV.³ This is about 7% of the estimated 1.4 million people living with HIV (PLHIV) in the country.⁴ The survival of these children is, largely, a result of accessibility and use of anti-retroviral therapy (ART). ART has helped HIV-infected children to survive into adolescence and early adulthood in large numbers.⁵ For example, the number of children accessing ART in Uganda increased from 43,803 in 2014⁶ to 66,203 in 2019.³ Although there is still a gap in ART access, the impact of using ART has reduced HIV/AIDS-related deaths in the country from 17 000 in 2010 to 4800 in 2019 among children in the country.³ Thus, moving HIV from a fatal disease to a chronic manageable health condition.⁷ Disclosure of HIV status is one of the first steps towards the realization of the management of HIV as a chronic disease in children living with HIV and engenders several benefits that include getting adherence counseling and receiving additional forms of psychosocial care from peers and members of the family,⁸ improved adherence to ART,^9,10 better retention to care,¹¹ better mental health outcomes,¹² reduced rates of death and disease progression¹³ and less involvement in high-risk sexual behaviors.¹⁴

However, HIV disclosure to children living with HIV in SSA remains low. It varies from 1.2% to 72%.¹⁵ In Uganda, HIV disclosure ranges from 26% to 43%^10,16,17 and occurs within socio-cultural contexts.¹⁸ Socio-cultural contexts may entrench silence and secrecy.¹⁹ Research has shown that socio-cultural contexts determine when, who, and how to disclose HIV status to children²⁰ and whether the disclosure is conducted as a one-time event or as a process-oriented strategy.²¹ For example, if the discloser is the biological mother, emotions of embarrassment and guilt for having infected the child²² are provoked.²³ The mother's shame over giving the illness to her child compounds her shame over having HIV herself and mentioning the illness tends to make her recall these forms of shame in the mind.²⁴ This interferes with disclosure either through concealing HIV illness information to the child or disclosure occurring as a one-time event²⁵ often unprepared and involuntarily precipitated by the child's refusal to take HIV medications.²⁶ In some cases, parents tell lies regarding children's HIV status^21,27 for fear of children reacting negatively to the disclosure,^28,29 or because of concerns of negative social consequences such as stigma³⁰ and social rejection of the child.³¹

Whereas if the discloser is a grandparent, disclosure is process oriented with zero or less negative emotions expressed³² because grandparents reassert their authority in child nurturing by proving their historical and social roles to tell secrets³³ more than biological parents. Thus, caregivers face the dilemma of whether to disclose or not to disclose the HIV status of children to them (children), yet they have close relationships with these children with many opportunities to receive HIV disclosure information. For instance, caregivers spend a lot of time with children during gardening, grazing animals, and mealtimes, in health facilities, or when doing household chores and are better placed to provide meaningful and well-considered disclosure to children living with HIV. Thus, it is important that we understand the socio-cultural influencers of disclosure of HIV status children from the perspectives of caregivers to offer appropriate help and support.

However, very little is known about the social and cultural influencers of disclosure of HIV status to children living with HIV taking daily ART to guide appropriate interventions as children transition to HIV chronicity. In this article, we explored the social and cultural factors that influence the disclosure of HIV status to children taking daily ART from the perspectives of caregivers in the Masaka region of Uganda.

Materials and Methods

Study Setting

This study was conducted in the Masaka region between October 2020 and July 2021. The Masaka region is in the southern part of Uganda about 125 km south-west of Kampala, the capital city of Uganda. It is where the first case of HIV in Uganda was identified in 1982.³⁴ The Masaka region has consistently had the highest HIV burden in the country according to data from three consecutive national HIV/AIDS surveys at: 10.6% in 2011, 8.0% in 2016 and 8.1% prevalence in 2021, respectively.^35–37 This is probably because the Masaka region has the largest number of Lake Victoria fishing communities in the country. The fishing communities of Lake Victoria are traditionally known to have disproportionate HIV prevalence and currently stand at 18%³⁸ with a 5% to 6% HIV prevalence among adolescents aged 13–19 years infected mainly through the mother-to-child transmission mode.³⁹

Study Design and Informants

This paper draws data from a larger three-phased explanatory sequential mixed-methods research project with the goal of investigating trajectories of disclosure of HIV status to children and their adherence to ART in the Masaka region, Uganda. This qualitative study purposively selected caregivers who had disclosed HIV status to children and caregivers who had not disclosed HIV status to children living with HIV taking daily ART identified through a cross-sectional quantitative study whose findings have been reported elsewhere⁴⁰ to participate in key informant interviews (KIIs). Caregivers learned about this study and its inclusion criteria through the routine monthly or quarterly clinic appointment visits to the HIV clinics when they escorted their children to these clinics. They were informed that if selected, they would be phone-called or home-visited to make an appointment for the interviews. We conducted 26 KIIs (11 with caregivers who disclosed HIV status to their children and 15 with caregivers who did not provide HIV disclosure to the children) between October 2020 and July 2021.

Data Collection

Data were collected through KIIs, with consenting caregivers to explore their sociocultural perspectives regarding the disclosure of HIV status to children living with HIV. Two days before the actual data collection date, caregivers were phone-called or home-visited to make appointments for face-to-face interviews. Caregivers provided verbal consent for being phone-called or home-visited and details of current location information including their phone contacts where applicable. Other caregivers preferred to be found at the nearby school premises, churches, or playgrounds in their communities and provided additional details about these premises. The information provided by the caregivers was compared with what had been written on the child's ART card. Identified discrepancies were clarified by the caregivers and updated accordingly. Participants were individually visited in their respective homes or at preferred secure locations in the community where a one-to-one private and confidential interview was conducted. Interviews were conducted in Luganda language, using a semi-structured interview guide, and lasted between 60 and 90 minutes and were all audio-recorded. Data on sex, age, education level, HIV testing history, relationship to the child, and disclosure information including positive or negative influencers of disclosure to the child among others were collected. KIIs were transcribed verbatim in Luganda language and back-translated into English before analysis. Data security was maintained by storing all data files on password-protected computers. We used alphanumeric codes to identify participants’ responses to maintain the anonymity of study participants. Informed consent documents and audio recordings were also stored in secure locations.

Data Analysis

Audio-recorded interviews and field notes were transcribed into a Microsoft Word document. This was followed by a rigorous systematic reading and rereading of the transcripts. We did not use any software to analyze the data. Instead, we manually analyzed the data using thematic analysis principles guided by Braun and Clarke⁴¹ basic thematic analysis steps. Using a highlighter, data was coded to identify segments in the data that indicated potential patterns linked to the research question. A theme code book in Microsoft excel was developed wherein specific codes were named and defined. This codebook was then used to systematically code all transcripts. Codes were sorted and organized into potential sub-themes and sub-themes combined to form main themes. A conceptual framework emerged that helped us to visualize the relationship between sub-themes, and main themes. We then considered the validity of each individual sub-theme in relation to the data set and how they fitted together to tell an overall story about the data in relation to answering the research question. Data was triangulated through making comparisons between the field notes, tape-recorded semi-structured interviews, and photographs (where informants permitted). We also kept an audit trail of the research processes and procedures from inception to realize trustworthiness.

Ethical Considerations

The study received ethical approval from the Uganda Virus Research Institute-Research Ethics Committee (UVRI-REC) (Ref# GC/127/19/12/757). Final approval to conduct the study was provided by Uganda National Council for Science and Technology (UNCST) (research registration number HS522ES). Participants provided informed consent evidenced by signing or thumb-printing pre-prepared consent forms. The caregivers were given detailed information about the study objectives, were reassured about their privacy and confidentiality of the information collected from them. Participants were also reassured that their participation in the study was voluntary. They were then asked for their informed consent. Data were identified by study numbers but not names to further increase confidentiality.

Results

Description of Study Participants

The sample consisted of 26 caregivers, 5 males and 21 females. More than half of the caregivers were biological parents who self-identified themselves also as living with HIV. The biological parents were on ART at health facilities where their children were also being treated for HIV. The rest of the participants were either HIV negative or had never tested for HIV and were other relatives like grandparents and aunts. The mean age for caregivers was 51 years with a range of 35 to 82 years. Eleven (11) caregivers had disclosed their HIV status to their children while 15 caregivers had not disclosed their HIV status to children living with HIV taking daily ART by the time of the study. Table 1 summarizes the characteristics of the informants.

Table 1.

Characteristics of Informants.

ID number	Sex	Age	Education level	Ever tested for HIV	Test result	Relationship to child	Child received disclosure
1	Female	39	Senior four	Yes	HIV positive	Biological mother	No
2	Female	65	Primary five	Yes	HIV negative	Paternal grandmother	No
3	Male	39	Senior three	Yes	HIV positive	Biological father	No
4	Female	54	Primary four	Yes	HIV positive	Biological mother	Yes
5	Female	50	Primary four	Yes	HIV positive	Biological mother	Yes
6	Female	35	Senior four	Yes	HIV negative	Maternal aunt	Yes
7	Male	78	Primary four	Yes	HIV positive	Biological father	Yes
8	Female	36	Primary six	Yes	HIV positive	Biological mother	Yes
9	Female	36	Primary seven	Yes	HIV positive	Biological mother	Yes
10	Male	47	Senior six	Yes	HIV Positive	Biological father	No
11	Female	65	Never went to school	Yes	HIV negative	Paternal grandmother	Yes
12	Female	60	Certificate nurse	Yes	HIV Negative	Maternal aunt	Yes
13	Female	35	Primary seven	Yes	HIV positive	Biological mother	No
14	Female	49	Primary six	Yes	HIV negative	Paternal Aunt	No
15	Female	46	No schooling	Yes	HIV positive	Biological mother	No
16	Female	49	Primary seven	Yes	HIV negative	Maternal aunt	Yes
17	Male	45	Senior two	Yes	HIV positive	Biological father	Yes
18	Female	57	Primary seven	Yes	HIV negative	Maternal grandmother	Yes
19	Female	62	Primary six	Yes	HIV negative	Maternal aunt	No
20	Female	50	Never went to school	Yes	HIV positive	Biological mother	No
21	Female	56	Primary three	No		Paternal grandmother	No
22	Female	37	Primary six	Yes	HIV positive	Biological mother	No
23	Female	42	Primary five	Yes	HIV negative	Maternal grandmother	No
24	Female	50	Primary four	Yes	HIV negative	Paternal aunt	No
25	Male	61	Primary seven	Yes	HIV positive	Biological father	No
26	Female	82	Senior six	No		Paternal grandmother	No

Sociocultural Influencers of HIV Status Disclosure to Children

The findings from the analysis of caregiver KIIs revealed themes that positively influence and themes that negatively influence the disclosure of HIV status to children living with HIV and taking daily HIV medications in the Masaka region of Uganda as summarized in Figure 1.

Figure 1.

A conceptual framework for the sociocultural influencers of disclosure of HIV status to children on ART in the Masaka region, Uganda (Source: Results from the data).

Positive Cultural Influencers

Positive cultural influencers included beliefs that: children are old enough to keep their diagnosis confidential, disclosure cultivates responsibility in the child to improve ART adherence, and child sexual health conversion talks.

Belief That Children are Old Enough to Keep Their HIV Status Confidential. Caregivers explained that, culturally, they had to disclose HIV diagnosis to the children because children had matured and could discern issues. They were also sure that the children would not accidentally or involuntarily reveal their HIV illness to friends since they were old enough and able to understand well as narrated by the following informant:

I disclosed to her because she had started knowing how to keep information confidential (female participant, 36 years old; HIV positive and biological mother to the child clarifying that her daughter was old enough to learn the HIV diagnosis).

Disclosure Cultivates Responsibility in the Child to Improve ART Adherence. Caregivers believed that disclosing HIV diagnosis to their children infused in them a sense of responsibility to take care of their lives at an early stage in life.

I did not want to nurture him without knowing that he has HIV, if I had not disclosed to him … perhaps he would have stopped taking the medicine. He is now active because he knows everything (female participant; 36 years old; HIV positive and biological mother to the child stressing the justification why she had to tell her son his HIV diagnosis).

Caregivers also believed that disclosure of HIV diagnosis to children was necessary for continued ART adherence among children as illustrated by the following caregiver:

When I told her she was infected with HIV, she started taking the medicine well (female participant, 36 years old; HIV positive and biological mother to the child clarifying the reason why she had to disclose to her daughter).

Sexual Health Education Through Conversations With Children. Child sexual health conversations that discourage sexual relationships during opportune times such as gardening, household chores, etc. were an important space to talk to children about their HIV status. Through these conversations, caregivers were able to disclose HIV status to children to prevent blind unprepared relationships and help children avoid getting involved in risky sexual behaviors as narrated by the following informant:

I was concerned that he may start having sex with young girls. So, I told him about his HIV status and to use a preventive mechanism to avoid the possibility of transmitting HIV infection to others (female participant, 60 years old; HIV negative and maternal aunt to the child supporting disclosure of HIV diagnosis through sexual health education).

Negative Cultural Influencers

Negative cultural influencers included the belief that children need not to be told since they were not asking questions coupled with good adherence to ART, the belief that knowledge of HIV illness will make children depressed and lose hope in life, beliefs that children were still young to understand their HIV diagnosis and beliefs that disclosure is a responsibility of biological parents.

Belief That There Is No Need to Tell Children Since They Were Not Asking Questions in Addition to Having Good Adherence to ART. Caregivers consistently believed that since children were not asking them questions about reasons for continued daily medications, there was no need to disclose HIV diagnosis to them. Caregivers were waiting for the time children will pester them for the rationale for daily medication for them to provide disclosure. Caregivers also pointed out that since children had good adherence to ART with good clinical outcomes, they did not see grounds for disclosure. Instead, they expressed fears that disclosure could interfere with the current good ART adherence among the children with severe psychosocial and clinical consequences as illustrated by the following informants:

He has never asked me. I left him to take the medicine without knowing the reason or know the disease he is suffering from (Female participant, 39 years old; HIV positive and biological mother of child providing rationale for continued non-disclosure of HIV diagnosis to the child). My child has never asked me anything to this effect. I cannot explain anything to my child if he has not asked me about it [HIV diagnosis]. My role is to remind him to take the medication. He has never missed any dosage (male participant; 47 years old; HIV positive and biological father of child justifying the reasons for non-disclosure).

Belief That Knowledge of HIV Illness Will Make Children Depressed and Lose Hope in Life. The data revealed that caregivers were concerned and shared the view that if children got to know their HIV diagnosis, they would be depressed, withdraw from colleagues, and lose hope in life.

I got concerned that if I happen to disclose the HIV diagnosis to this child, she will get so sad (female participant; 35 years old; HIV positive and biological mother to the 14-year-old daughter justifying the reasons for non-disclosure). He will be depressed if he knows it, isolate himself from his colleague and lose hope in life (female informant, 50 years old, HIV positive and biological mother to child).

Belief That Disclosure is a Responsibility of Biological Parents. Caregivers who were not biological parents questioned the rationale of disclosure to these children because they believed that the responsibility of disclosing HIV diagnosis to children rests with biological parents (mothers or fathers). The caregivers reasoned that disclosure should be delayed if mothers or fatherers are not available to disclose. This is so because most of the pediatric HIV infections are vertically acquired from mothers to their children or fathers infecting mothers who then infect children. Caregivers believed that biological parents can sensitively and safely determine when, where, and how to provide meaningful disclosure.

Disclosure is a responsibility of parents, either father or mother to disclose. It is their responsibility to explain to their child what happened (female participant, 50-year-old HIV negative and paternal aunt to the child, justifying why disclosure is a responsibility of biological parents).

Belief That Children are Still Young to Understand Their HIV Illness. There was a belief among caregivers that their children were still young to understand the HIV status. Most caregivers believed that their children were cognitively immature, and therefore, incapable of comprehending their diagnosis and its implications. However, the World Health Organization (WHO)⁴² recommends that all children up to 12 years should know their HIV status. Care givers were not aware of this recommendation and thought that disclosure should happen when children are 17 years or 18 years of age.

For sure the child should be 17 years or 18 years when he or she has grown up and you can explain something to him or her, and they understand (female caregiver, 39 years old, biological mother of the child). The right age to disclose should be at the age of 18 because he can understand and be self-reliant (male caregiver; 47 years old; biological father of the child). At 14 years … this child is still very young, and the cognitive thinking is still low. That is why I cannot disclose to her (female participant; 35 years old; HIV positive and biological mother to the 14-year-old daughter justifying the reasons for non-disclosure).

Positive Social Influencers

Positive social influencers of disclosure of HIV status to children included counseling support from the facility and friends and fear of children learning HIV diagnosis from irresponsible third parties in the community.

Counselling Support From the Facility and Friends. Getting counseling support from health facilities and friends for their HIV-infected children was commonly stated by caregivers as the basis for the disclosure. They described the importance of counseling as being key in assisting the children to play a role in HIV disease management such as reminding caregivers of the timing of medication, responsible sexual behavior or even going for clinic appointment reviews on their own as illustrated by the following informants:

I disclosed to him and took him to the health workers for counselling. From there, he got friends who are health workers, they have a good relationship. They even call him on phone if he has not appeared at the facility on his appointment day (male participant; 78 years old; HIV positive and biological father to the child explaining the rationale for disclosing to his son). After disclosure, we went to the health facility and counsellors started counselling her. Her fellow children tried so much to motivate her. Health workers have supported her to have a positive living (female informant, 65-year-old HIV negative grandmother describing the relevance of counselling to children after disclosure).

Fear of Children Learning HIV Status From Irresponsible Third Parties in the Community. A strong theme that emerged from the data was fear of children learning HIV status irresponsibly from other people in the community because of children's obvious clinically recurring and repeated HIV disease symptoms. Caregivers feared the shame that accompanies the irresponsible disclosure from third parties would leave them helpless with no genuine answers to offer in explaining children's HIV status as explained by the following informants:

As a caregiver, you must disclose to the child, because if you do not, the child will learn that she is infected from irresponsible people in the community (female participant, 35 years old HIV negative maternal aunt to a 17-year-old HIV infected girl explaining the motivators for disclosure of HIV diagnosis to the child).

Negative Social Influencers

Caregivers repeatedly expressed negative social concerns because disclosing HIV status to children results into breaking confidentiality and family secrets as children would inadvertently disclose HIV status to their friends and others in their setting. Participants also explained that disclosure of HIV status would lead to children getting discriminated and socially rejected in the community.

Concerns That Children Do Not Keep Confidentiality and Would Inadvertently Disclose HIV Diagnosis to Others. Consistently, caregivers expressed worries that if children were informed of their HIV diagnosis, they would not keep their HIV status confidential to themselves. Participants feared that children would unconsciously tell HIV diagnosis to their friends, associates, and playmates with dire consequences to their wellbeing and the entire family since these children were perinatally infected with HIV.

You know how children behave, sometimes they are stubborn; he can go and tell his colleagues that he takes medicine of this kind (female caregiver, 65 years old; HIV negative and grandmother of the child). If I had disclosed to him, he would have shared it with friends and, they would have advised him to stop taking the medicines. That is why I have never told him (female participant, 39 years old; HIV positive and biological mother). This child cannot keep this status confidential. She can disclose to her fellow pupils in school. Therefore, I have not told her that you are taking this medication purposely for HIV (female participant; 35 years old; HIV positive and biological mother to the 14-year-old daughter qualifying the grounds for non-disclosure).

Fears of Children Being Discriminated by Siblings, Playmates, and the Community. Caregivers in a repetitive manner expressed worries about children becoming discriminated against by siblings, playmates, and the community. This deterred them from disclosing HIV status to the children. They raised concerns about wide-spread community stigma that would befall their children if they were told about their illness. This was justified by the notion that HIV illness is not yet a normalized disease.

I have not disclosed to the child because some people in our communities still have the perception that someone who has HIV is cursed. It is not a normal infection like other diseases (male participant; 39 years old; HIV positive and biological father of child).

You know people are always discriminating people living with HIV, so I cannot disclose to him because they discriminate them[children] (female participant, 39 years old; HIV positive and biological mother of child).

Also, caregivers were afraid that if children received disclosure of their HIV diagnosis, they would be insulted by colleagues.

I did not disclose to her because she might get challenges with colleagues such as insulting her. They also have an insulting language, and fond of belittling HIV infected people (male participant; 39 years old; HIV positive and biological father of child).

Discussion

In this qualitative study, disclosure of HIV status to children living with HIV taking daily ART was both positively and negatively influenced by social and cultural factors. The data provided rich insights into how caregivers perceive, and regard disclosure of HIV status to children and the corresponding implications involved.

Positive Cultural and Social Influencers

The main positive cultural influencers of disclosure were the belief that disclosure cultivates responsibility in the child to improve ART adherence and the belief that sexual health education through conversations with children positively influences HIV disclosure. The finding that sexual health education conversations influence HIV status disclosure to children does not resonate with results from earlier studies. For example, a systematic review by Bastien et al.⁴³ showed that discussions on sexual health education talks between caregivers and children tend to be authoritarian and unidirectional, characterized by vague warnings rather than direct, open discussion, and are less clear when it comes to associations between caregiver communication and children's sexual activities. Results in Zimbabwe showed that 1 year after a disclosure study, two-thirds of caregivers had not talked to children living with HIV on matters of HIV diagnosis, sexuality, and safe sex despite these caregivers saying that their children needed this information.⁴⁴ This means that there is still a need for further research on the disclosure of HIV diagnosis to children living with HIV.

The belief by caregivers that disclosure cultivates responsibility in the child to improve ART adherence was another positive cultural influencer of HIV status in children living with HIV.

This result implies that children fully understood the rationale for continued HIV medications and the consequences of non-adherence to ART. Thus, pediatric HIV programs should start to prepare for progressive disclosure, at every clinic visit, to maximize disclosure opportunities for children. This finding is consistent with a study in Namibia, where caregivers’ belief in disclosure resulted in increased children's adherence to ART and enhanced their understanding of how HIV treatments work.⁹ In two Ugandan studies, the most common reason for caregivers to disclose HIV diagnosis to children was the belief that disclosure would improve ART adherence¹⁷ and take personal responsibility for their care.⁴⁵

This study also found that the perception of getting counseling support from the facility and from friends was a positive social influencer for caregivers to provide disclosure of HIV status to children. This finding is consistent with a recent South African study in which seeking counseling and health education support at health facilities relieved caregivers from worries about how to start the disclosure process and improved caregiver-child relationships after disclosure.⁴⁶ Studies in Ghana^25,47 and the United States of America¹² had earlier documented that counseling support to children after disclosure of HIV diagnosis engenders trusting relationships, good ART adherence, and enhanced psychosocial care for post-disclosed children. This implies that seeking counseling support after disclosure helps children to clear any prevailing tensions and curiosity around their condition.

Negative Cultural and Social Influencers

The belief that disclosure increases children's depression and loss of hope in life among children living with HIV was a negative cultural influencing factor in this study. This finding contradicts earlier results that showed that disclosure improves the psychological wellbeing of children. A study of children who received disclosure and psychological functioning versus those with no disclosure in New York showed that children with disclosed HIV results significantly exhibit less anxiety problems than children with no disclosure.¹² Another study that examined the association between pediatric disclosure and emotional and behavioral variables indicated that children who received HIV disclosure exhibited fewer depressive symptoms than nondisclosed children.⁴⁸ From a practice point of view, this negative finding implies that there is a need to routinely sensitize caregivers and communities about disclosure preparation and indeed support caregivers with the progressive disclosure process among children living with HIV.

Also, the finding that disclosure is the responsibility of biological parents in this study means that a considerable number of children staying with non-biological caregivers have a risk of delayed or nondisclosure. This further implies that they will continue taking daily ART without knowing the reasons and are likely to suffer the consequences of non-disclosure such as poor adherence to ART and HIV disease progression among other risks. This finding also does not support earlier results in Malawi where grandparents were seen to play a more pivotal role in determining HIV disclosure to children living with HIV than biological parents.³² Thus, there is a need to urgently sensitize and encourage non-biological caregivers to prepare stepwise progressive disclosure to children living with HIV under their care, especially when they escort these children to attend clinic appointments and during home visits by health workers and peers.

The concern that children would not keep HIV diagnosis confidential and inadvertently disclose HIV status to others was also a major negative social influencer that led caregivers to withhold HIV status disclosure to children living with HIV. This finding is in keeping with previous results in a United Kingdom study in which parents also did not agree to disclose HIV diagnosis to children for fear that children would accidentally reveal HIV diagnosis to others in the community, thereby simultaneously revealing maternal HIV status and exposing the entire family to stigmatization, discrimination, and prejudice.⁴⁹ This implies that there is a need to help parents and other caregivers in planning successful disclosure progressively without adverse social and cultural consequences. In related studies conducted in South Africa and Botswana, caregivers feared to disclose HIV status to children because they were concerned that children would tell others about the diagnosis.^50,51 This is contrary to WHO and the American Academy of Pediatrics guidance that HIV perinatally infected children be incrementally and progressively told their HIV status once they reach school-going age.^42,52 Thus, there is a need to quickly domesticate or adapt these international disclosure guidelines contextually to improve disclosure in this sociocultural setting.

Also, there was fear that children would be discriminated against by siblings, playmates, and the community negatively influenced HIV status disclosure to children in this setting. This result is in keeping with a South African Study in which the fear of children being socially rejected and discriminated deterred caregivers from disclosing HIV status to children living with HIV.⁵³ A study in Nigeria reported how communities labeled and blacklisted HIV-infected children and caregivers decided not to subject their children to such discrimination by complete non-disclosure.³¹ This means that HIV disclosure to children is a complex sociocultural process that caregivers should emotionally be supported to deal with gradually, according to the child's level of understanding and sociocultural context.

Limitations

This analysis was based on key informant interviews of caregivers of children living with HIV taking daily ART. A combination of key informant interviews and focus-group discussions would have provided more information to corroborate the findings. Secondly, the results were based on caregiver perceptions which are prone to social desirability. However, our findings reveal important findings that inform the need for policy and practice interventions to improve the disclosure of HIV status to children by caregivers in this and similar settings.

Conclusions

This study contributes significantly to our understanding of the positive and negative social and cultural influencers of disclosure to children living with HIV. The belief that disclosure cultivates responsibility in the child to improve ART adherence positively influenced the disclosure of HIV status to children. However, the belief that disclosure increases children's loss of hope in life and concerns that children would be discriminated against and socially rejected if they received disclosure were negative sociocultural influencers of disclosure of HIV status to children taking ART in the Masaka region, Uganda. These findings suggest a need for socio-culturally informed psychosocial support interventions to overcome these negative sociocultural HIV disclosure influencers. Caregivers also need sensitization and training in socio-culturally contextualized disclosure guidelines that prepare children to receive disclosure progressively. Through this process, caregivers would be empowered with the practical skills needed to recognize opportunities to initiate disclosure early and manage post-disclosure follow-ups in a manner appropriate to their children's physical and emotional development.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iDs

Robert Kairania

Washington Onyango-Ouma

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