Barriers and facilitators of disclosing HIV-positive status to minors: an exploratory study among primary caregivers in South Africa

Introduction

South Africa has a relatively high burden of human immunodeficiency virus (HIV) infection. HIV is a public health concern that affects everyone regardless of age, gender, and ethnicity [1]. Disclosure of one’s HIV status is critical, and may cause a stressful and anxious situation in one’s life before and after the disclosure [2]. Disclosure of HIV status poses a challenge to parents, caregivers, and guardians, who face a stressful process of informing HIV-infected minors who are under their care about their HIV status; it can also put pressure and strain on relationships of children with their parents, caregivers, or guardians [3]. Many parents, caregivers, and guardians are not disclosing HIV status to the infected minors, and most of the children living with HIV who are on antiretroviral therapy (ART) do not know their HIV status [4]. This study aimed to explore HIV status disclosure to infected minors in Thulamela municipality. HIV is a health challenge and major concern worldwide. The initiation of prevention of mother-to-child transmission (PMTCT) helps to reduce the number of new HIV infections in children. Despite that, there are still new HIV infection in children, especially from those mothers who did not attend antenatal services during pregnancy. In Asia, HIV prevalence is low at 0.3%; however, an estimated 3.5 million people are living with HIV, out of which 71% are children [5].
Sahay [6] indicated that disclosure of HIV status to children in India poses complex challenges because of issues concerning transmissibility, maternal guilt, parent’s own HIV status, and potential for social stigma and isolation among others. The disclosure was reported to be as high as 75.3% in a study conducted among 145 of HIV-infected children in India. Taukeni and Ferreira [7] estimated that about 35 million people are living with HIV and acquired immunodeficiency syndrome (AIDS), and 70.6% of them are living in sub-Saharan Africa, with 2.3 million of children. According to a study by Nazarali [8], in sub-Saharan Africa, disclosure of HIV status is often viewed as a discrete event, even though the number of people living with HIV increases, and majority of HIV-positive children are unaware of their HIV status, even if currently receiving treatment. The Ministry of Health in Uganda indicated that 176,948 of HIV-positive children under 15 years are not aware of their status [8]. In Uganda, HIV-infected children who are school-aged and entering adolescence, experience a challenge in accessing life-saving drug therapies [9].
Appiah et al. [10] stated that in Ghana, disclosure of HIV status to children is very low, as there are 43% of HIV-positive children who are on ART and whose HIV status has been kept secret. Many of those children grow into adolescence not knowing their HIV status. According to statistics of South Africa [11], an estimated number of 280,000 children (aged 0 to 14) were living with HIV in South Africa, out of which only 58% were on treatment. New infections have declined among South African children, from 25,000 in 2010 to 13,000 in 2017. This was mainly due to the success of PMTCT programs. In South Africa, the rate of mother-to-child transmission was 3.6% in 2011 and decreased to 1.3%, which indicates reducing tendency to eliminate mother-to-child transmissions. However, for every child initiated on treatment, 1.4 children are newly infected with HIV.
Children are also affected by HIV through the loss of family members, and they become more vulnerable to the disease. As they need support and protection, those who are expected to protect them may be the ones who expose those children to danger of being infected with HIV. In South Africa, more than 2 million children have been orphaned by HIV and AIDS [7]. According to the National Department of Health [12], there is a low disclosure rate of HIV status to infected minors in South Africa, and most of parents, caregivers, and guardians are afraid of emotional impact, consequences of disclosure, and issues of guilt, shame, and blame of HIV disease. South Africa adopted sustainable development goal 3 in September 2015, in which the country decided to tackle HIV epidemic, with one of their goals to end the spread of HIV disease. Moreover, South Africa has a range of relevant policies and interventions geared towards fighting the HIV and AIDS epidemic, including the national strategic plan on HIV/AIDS and STIs 2000-2005, integrated school health policy, basic education national policy on HIV and tuberculosis (TB), 2013, and PMTCT program. These policies are an indication that the South African government and its’ partners have the intention to address the HIV pandemic. According to district health barometer [13], 65.5% of children living with HIV are on ART. However, there is a need for identification of barriers and facilitators of HIV status disclosure to infected minors, and to propose strategies of promoting disclosure of HIV status to infected minors.

Problem statement

Families and individuals are going through enormous stress as a result of HIV-infected minors continue care as well as the trauma of their death. At some points, HIV-infected children complain about the use of ART every day, while others are not taking treatment. As a result, some of caregivers also complain about non-adherence to the treatment prescribed for HIV-infected minors. The reason for non-adherence is caused by lack of awareness on taking the treatment as prescribed [14]. The health sector in Thulamela municipality needs to prevent the spread of HIV and completely eliminate the disease according to sustainable development goal 3 of the United Nations, just like the whole world.
Despite the availability of the above sustainable development goal 3 established by the United Nations, considering a significant number of HIV-infected minors who are not aware of their status, the following reasons are often mentioned as acute fears associated with disclosure of HIV status: parents/caregivers/guardian’s accusation of infidelity and risk of violence [15]. Non-disclosure to those infected may place these minors at risk of new infection or a relapse by not adhering to medication regiment. HIV status disclosure to infected minors poses a greater challenge to parents, caregivers, and guardians. It would be very difficult to reach that sustainable development goal 3 if disclosure of HIV status to infected minors would not properly and effectively be addressed. Therefore, the purpose of the study was to explore and describe the barriers and facilitators of disclosure of HIV status to infected minors by parents/ caregivers/ guardians at a selected community health center (CHC), to recommend measures, which promote HIV status disclosure to infected minors.

Material and methods

In this study, exploratory-descriptive design was applied to understand better the barriers and facilitators of HIV status disclosure to infected minors.

Setting

The study was conducted at CHCs located within the Thulamela municipality, Vhembe district, Limpopo province, South Africa. CHC was selected because of its’ high number of parents, caregivers, and/ or guardians who are collecting medication for their HIV-infected children. The selected CHC provides additional health services, such as antenatal care, HIV and AIDS management, and other general health services.

Population and sampling

Population included all parents, caregivers, and guardians who were 18 years of age and above, caring for HIV-infected minors who were receiving ART at a selected CHC within Thulamela municipality. Participants were purposefully selected; data saturation was done after interviewing 16 participants and five more participants were interviewed for additional information, making a total sample of 22 participants.

Data collection and analysis

In-depth individual semi-structured interviews were performed with 22 participants. Audio recorder was used to capture verbal communication. Field notes were taken; non-verbal cues observed during interviews were recorded. Data were analyzed with thematic analysis technique. It was firstly transcribed in Tshivenda and translated into English by a language expert. The authors went through the field notes and transcripts, and then combined similar information to form themes. An independent coder was used by the researcher to ensure appropriateness of a theme [16].

Measures to ensure trustworthiness

Trustworthiness was ensured through credibility, dependability, conformability, and transferability [17]. A prolonged engagement was achieved by spending 45-60 minutes with each participant during the interview. Researchers made use of different methods of data collection, including audio recorder, field notes, and interview. Purposive sampling technique was used to select the participants who were key informants to the study, which facilitated to ensure transferability.

Ethical consideration

An ethical clearance (SHS/20/PH/10/2505) was obtained from university’s ethics committee. Ethical principles, such as informed consent, freedom from harm, confidentiality, privacy, anonymity, and the right to withdraw from the study at any time, were all ensured.

Results

Demographic characteristic of the participants

Twenty-two participants were interviewed during data collection period. There were predominantly females who were collecting medication for their HIV-infected children from the selected CHC in Thulamela municipality. The participants were mainly parents (n = 17), followed by caregivers of HIV-positive minors (n = 4) and guardian (n = 1). Participant’s age ranged from 23 to 53 years, and they were mostly unemployed (n = 14), with 8 employed (n = 8) (Table 1).

Barriers and facilitators of HIV status disclosure

Four themes and 14 sub-themes emerged from the data (Table 2), including psycho-social challenge related to HIV status disclosure to infected minors, barriers that hinder HIV status disclosure, facilitators of HIV status disclosure, and suggestions to improve HIV disclosure. Theme 1. Psycho-social challenge related to HIV disclosure
Themes and sub-themes are indicated in Table 2. The reported psycho-social challenge related to HIV status disclosure included feelings of hopelessness, parents blaming themselves, and fear of stigma due to HIV-positive status. Sub-themes from this theme are described as follows:
• Parents feel hopeless
HIV status disclosure is a very sensitive issue that makes one feels burdened and anxious. Parents, caregivers, and guardians experienced psycho-social challenges as they felt hopeless regarding disclosing HIV status to their HIV-positive children. One of the parents who participated in the study said:
“I feel heartbroken and hopeless thinking about how I going to tell him the kind of medication he is taking.” (Participant No. 2, parent)
• Parents blame themselves
Some of the parents blamed themselves for infecting their children with HIV disease, which happened through mother-to-child transmission during birth. Another parent reported: “When looking at the child, I blame myself and feel bad that my child is going to die.” (Participant No. 8, parent)
• Fear of stigma due to HIV-positive status
Parents, caregivers, and guardians were experiencing fear of stigma due to HIV-positive status, where people may not want to associate with them because of the sickness, being rejected, or isolated by family members, friends, and community. Some participants said: “The child would never be free at all in her life if I tell her HIV status; her friends will discriminate and isolate her, they will not play with her anymore.” (Participant No. 15, guardian)
“Another thing is that their friends will no longer play with her because their parents will say don’t play with her, she will get you infected.” (Participant No. 22, parent)
“She is a child. I fear that she would not keep the secret, she would tell her diagnosis to anyone.” (Participant No. 5, parent)
Theme 2. Barriers that hinder HIV disclosure
Participants reported barriers that hinder them to disclose HIV status to their children, such as age of the child, lack of strategies to disclose HIV status to the children, and non-disclosure to other family members:
• Age of the child living with HIV
Age of the child was perceived as the barrier to parents, caregivers, and guardians in disclosing HIV status to their children who are living with HIV. Some of the participants said: “For now, I can’t say that there is a difficulty when talking to the child because the child is too small to talk about her HIV status.” (Participant No. 1, caregiver)
“Here, I had put the urge to disclose the HIV status to him at halt because he is too young.” (Participant No. 20, parent).
“Is that the child is too young to tell her about the disclosure of HIV.” (Participant No. 3, parent)
“The child is too young to tell him about his HIV status.” (Participant No. 5, parent)
• Lack of strategy to disclose HIV status
The other barrier that hinders the disclosure of HIV status to infected minors by parents, caregivers, and guardians was the lack a strategy to disclose HIV status; the participants did not know how and when to tell their children the reason for taking medication and/or what kind of medication they are taking. Another parent reported:
“I don’t have the way or strategy on how I have to tell my child about HIV status.” (Participant No. 3, parent)
• Non-disclosure to other family members
Non-disclosure to other family members was also seen as the barrier that hinders HIV disclosure to their children, as being HIV-positive within the family creates tension and become a source of embarrassments between family members. A participant said:
“The other thing is that I didn’t explain to my family members what the diagnosis of the child, fearing that they would not accept my child like others.” (Participant No. 4, parent)
Theme 3. Facilitators of HIV disclosure
Assertiveness, parent acceptance, disclosure of own HIV status, participation of children in a support group, and the involvement of social workers were all reported by parents, caregivers, and guardians as the facilitators of HIV status disclosure to infected children.
Here underneath are sub-themes the emerged from this theme:
• Assertiveness
Being assertive as parents, caregivers, and guardians helped them to be able to talk to their HIV-infected children about their HIV status and the type of medication they are taking every day:
“Being assertive is the attitude that helps me to be able to talk to my child why is she taking medication.” (Participant No. 10, parent)
• Parent accepting and disclosing their own HIV status
Some participants reported that accepting the disease and disclosing their own HIV status helps them to be able to talk to their children about their HIV status:
“If I accept and disclose my HIV status, it will help me to be able to talk to the child about her HIV status.” (Participant No. 3, parent)
“Accepting your diagnosis makes it easier for you to be able to talk with anyone about your HIV status.” (Participant No. 11, parent)
“I think if you accept that I am sick, my child is also sick, and make peace with it, it will make it easy for me to talk about HIV status with the child.” (Participant No. 7, caregiver)
“You can’t disclose to everybody but your family members, so that they can help the child when you are absent.” (Participant No. 11, parent)
“One can take it easy and accept the situation fast.” (Participant No. 9, parent)
• Participation of children in support groups
The participation of children in support groups was shown to impact HIV status disclosure by parents, caregivers, and guardians. They felt more supportive when they gathered, sharing their experiences, and children meeting other children with the same disease can realize they are not the only one suffering. Children would be able to understand and adhere to their treatment:
“I may take her to healthcare center, in which there is a support group for children who are living with HIV for her to meet with other children who have the same disease, so that she can see and realize that she is not alone.” (Participant No. 1, caregiver)
“What I think it can be done is that this thing of joining a support group is better if children who are of the same diagnosis meet and talk to each other, sharing their experience.” (Participant No. 4, parent)
“This is the best way in the support group, where the child meet with other children who are living with the same disease as his.” (Participant No. 5, parent)
“My child understands our situation mostly when we come to the support group where they give medication within the group, and children see that the medication is the same to all group members.” (Participant No. 7, caregiver)
• Involvement of social workers
The involvement of social workers enables parents, caregivers, and guardians to disclose HIV status to their infected children. Parents reported:
“But when he grow-up, I will take him to the social worker’s office, so that they can help me to disclose his status.” (Participants No. 5, parent)
“Is when those people who are social workers help parents with children who are living with HIV to explain to children about HIV status of the children.” (Participant No. 6, parent)
“But sitting down with the child and social workers, I can explain to the child what is happening.” (Participant No. 10, parent)
Theme 4. Suggestions to improve HIV disclosure
The participants suggested several strategies, which could promote the disclosure of HIV status to infected minors, including establishment of support groups for children living with HIV, parental involvement, provision of incentives for taking medication, health education, HIV treatment/medication compliance, and teaching children about medical conditions at school.
• Establishment of support groups for children living with HIV
The establishment of support groups for children living with HIV was suggested by some parents as the best way of helping them to be able to disclose HIV status to their children who are HIV-positive:
“Things like this, a support group, is the best way helping parents to talk to their children.” (Participant No. 7, caregiver)
“The best way there must be a support group in the community healthcare center like that one of Sibasa Community Health Center situated at Makwarela, where they take the children who are living with HIV for a trip, for example to Kruger National Park”. (Participant No. 1, caregiver)
“When we bring children to the support group as parents, we should meet so that we share our experiences on how to disclose HIV status to the children, it may help us.” (Participant No. 5, parent)
“In a time when we do our meeting with other parents who are caring for children living with HIV, sharing our experiences and children meet in their groups; it helps that child can see he/ she is not alone.” (Participant No. 8, parent)
• Parental involvement in support groups
Parent, caregiver, and guardian’s involvement within support groups was reported to have a potential to aid the process of HIV status disclosure to children living with HIV. This was revealed to help parents, caregivers, and guardians of these children, while emphasizing the need to disclose their HIV status. The participants expressed that:
“Even when we are at the healthcare center as parents, we have to tell the children their status.” (Participant No. 2, parent)
“We as parents must have as many meetings in a form of support group as possible and not take it for granted because this meeting is helping so much.” (Participant No. 8, parent)
“The meeting of parents who are caring for children who are living with HIV.” (Participant No. 3, parent)
• The provision of incentives for taking medication
One of the parents reported that he made use of the provision of incentives for his child to take medication, and it helped him to have a chance to tell his child about medication:
“I buy some incentives like samba things that he loves, then I call him inside the house where there are no other people and tell him that this medication cannot be taken when other people are around.” (Participant No. 2, parent)
• Health education
Health education was taken as one of the things that may improve the disclosure of HIV status to HIV-infected children, as parents would obtain knowledge on how to disclose HIV status to children and importance of taking medication. Through health education, parents would be taught about the process of HIV status disclosure to infected minors:
“I think we come here to the clinic for medication, we supposed to be gathered together by nurses and teach us on the importance of taking medication.” (Participant No. 19, parent)
“I think we need to be gathered together and taught on how to live with children who are living with HIV, so that we will not separate them from others.” (Participant No. 3, parent)
“Like this, we have to be gathered and taught on how to talk with the children living with HIV; taught on how to start disclosing HIV status of our children.” (Participant No. 20, parent)
“There must be an education for parents of children who are living with HIV, teach them on how to talk with the children because the ways of talking are different, some are harsh and some are cool. So, education on how to disclose HIV status to infected minors is important to parents”. (Participant No. 10, parent)
• HIV treatment and medication compliance
HIV treatment or compliance with medication was seen as a strategy that could improve the disclosure of HIV status; some of the parents said:
“So, we have to follow our treatment to live better.” (Participant No. 7, caregiver)
“Accepting that we are sick, we have to take medication as we are supposed to.” (Participant No. 11, parent)
“We are fortunate because it happens to us when there is a medication that makes us live long, other people died because there was no medication, what’s important for us is to comply with HIV medication.” (Participant No. 7, caregiver)
“Taking treatment every day, it gives me the chance to talk to her.” (Participant No. 21, parent)
“I am grown-up, unlike her, I know the importance of taking medication. I think it will help me to tell her about taking medication.” (Participant No. 14, caregiver)
• Teaching children about medical conditions at schools
Teaching children about different medical conditions at schools to help them know different chronic diseases that people may live with could help to improve the process of HIV disclosure:
“I also think that there must be a curriculum at school that teaches our children about all kinds of chronic diseases, so that children living with HIV must see that they live with HIV and others may suffer from another chronic disease.” (Participant No. 7, caregiver)
“There must be some class at school that teach children about chronic disease, which may help them to understand better that is not only HIV people live with.” (Participant No. 22, parent)

Discussion

The study revealed that the disclosure of HIV status to the infected minors is a very difficult situation that strains parents, caregivers, and guardians; it creates tension between themselves and their infected children. That participants reported experiencing psycho-social challenges regarding the disclosure of HIV status to their infected minors, including feeling of hopelessness, blaming themselves for infecting their children, and fear of stigma due to HIV-positive status. Studies also stated that parents, caregivers, and guardians experience several psycho-social challenges regarding disclosure of HIV status, with fear of asking themselves too many questions on what is going to happen to their children when they disclose HIV status of their children [18, 19]. Parents, caregivers, and guardians worry that their children would suffer emotional trauma, fear of social rejection, and living with a burden of thinking that they are going to die. They also fear stigma related to HIV-positive status.
Several barriers to disclose HIV status to children were described by parents, caregivers, and guardians, such as age of the child, lack of strategies to disclose HIV status, and non-disclosure to other family members. A study conducted by Madiba [20] observed that parents, caregivers, and guardians did not disclose HIV status to infected minors because they feel anxious, and they lacked skills on how and when to disclose HIV status to their children. Gyaimfi et al. [21] revealed that parents, caregivers, and guardians were not disclosing HIV status to their infected minors because they thought children were too small, and they were not asking questions about medication they consumed daily; therefore, parents, caregivers, and guardians concluded that there was no need for disclosure. Ibrahim et al. [22] also stated that inadequate knowledge to deal with disclosure of HIV status was another reason why parents, caregivers, and guardians were not disclosing HIV status to their children. Not knowing about HIV and AIDS made people having a negative perception towards people living with HIV, such as isolation, rejection, and discrimination, and it creates tension between family members.
The participants reported several suggestions of HIV status disclosure to infected minors as well as facilitators of HIV status disclosure. They suggested the establishment of support groups for children living with HIV. Most of them believed that support groups could help them during the process of HIV status disclosure. Being assertive, accepting, and disclosing own HIV status as well as the involvement of social workers could be helpful, as parents, caregivers, and guardians were unable to disclose HIV status by themselves. A study conducted by Adromilehin et al. [23] reported that HIV status disclosure process would be facilitated by having knowledge acquired through healthcare facilities. Parents, caregivers, and guardians also suggested that health education must be done through health workers or social workers, who help them with knowledge on how and when to disclose HIV status to their children and the importance of taking medication. Galea et al. [24] stated that it was important for parents, caregivers, and guardians to have information about HIV, so that they would be able to tell their children why they are taking medication.
Parents, caregivers, and guardians reported that being on HIV treatment and/ or complying with medication, and teaching children about medical conditions at school could help to improve the process of HIV status disclosure and assist children to understand their illness. Mweemba et al. [25] and Aderomilehin et al. [23] reported that HIV status disclosure process would evolve when children were able to ask questions about their sickness, with detailed questioning about their HIV status facilitated by the knowledge they acquire through health education.

Limitations

The sensitivity of the study was one of the limitations as people still have a negative perception of being HIV-positive, and sometimes, they are not free to talk about it. The study targeted parents, caregivers, and guardians who were caring for HIV-infected minors, most of them aged from 22 to 35 and unemployed, and they were unable to express their experiences regarding HIV status disclosure to their children. Despite the limitation of the study, parents, caregivers, and guardians reported various strategies, which could influence intervention to promote disclosure of HIV status to infected minors.

Conclusions

The aim of the study was exploring and describing HIV status disclosure to infected minors, and to propose strategies to promote disclosure of HIV status to infected minors in selected CHC within Thulamela municipality. Psycho-social challenges concerning the disclosure of HIV status encountered by parents, caregivers, and guardians were regarded as reasons why they were not disclosing HIV status to their children. Feeling of hopelessness, fear of stigma due to HIV status, and lack of strategies to disclose HIV status were also found as obstacles in disclosure of HIV status to infected minors. Being assertive, accepting, and disclosing own HIV status, participating in support groups with HIV-infected children, and involvement of social workers were found as the facilitators of HIV status disclosure by parents. The suggestions to improve HIV status disclosure were reported as establishment of support groups for children living with HIV, health education, parental involvement, and provision of incentives for taking medication, being on HIV treatment, and medical compliance as well as teaching children about medical conditions at school. HIV guideline and HIV programs for HIV status disclosure to infected children need to be reviewed to prepare parents, caregivers, and guardians for the process of HIV status disclosure for their children.
The study shows that parents, caregivers, and guardians did not have the knowledge and skills on how and when to start the process of HIV status disclosure to the infected children. It is important to design HIV status disclosure strategies, which would improve parents, caregivers, and guardians’ skills and knowledge by promoting health education. Moreover, the involvement of social workers and healthcare providers during the process of HIV status disclosure to infected children as well as the establishment of support groups for children living with HIV is important as children would be able to associate with their peers and learn from their experiences.

Acknowledgement

The authors are thankful to all parents, caregivers, and guardians who took the time to participate and share their experiences in this study.

Conflict of interest

No conflict of interest to declare.

References