3.1 Characteristics of Informants
Eighteen (18) healthcare providers participated in the study; 2 were medical officers (medical doctors), 5 were clinical officers, 8 nurses, and 3 were HIV counsellors. In terms of gender, 5 were males and 13 were females. The age of healthcare providers ranged from 27 to 54 years. Experience of healthcare providers in the HIV clinic providing HIV care and treatment services ranged from 1 to 17 years.
3.2 Themes and Subthemes
Analysis of transcripts revealed two themes: (1) HIV disclosure enablers and (2) HIV disclosure impediments to children living with HIV and taking daily HIV medications in the Masaka region of Uganda as summarized in Table 1.
Table 1. Summary of Themes and Sub-Themes
Theme
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Sub-Theme
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Sample Codes
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HIV Disclosure Enablers
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Having strong child peer support systems
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Sharing challenges and experiences
Agemate peer support network
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Availability of disclosure guidelines/standards
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Psychosocial support pages
Consolidated HIV guidelines
Disclosure components
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Offering social and psychological spaces for clients to ventilate their issues
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Unlimited counselling time
Child friendliness
Good relationship skills
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Disclosure promoting practices at the facility
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Routine checking of each child for medication reasons.
Recurring assessment for disclosure readiness
Disclosure talks to caregivers
|
HIV Disclosure Impediments
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Prioritizing children with high viral loads for disclosure.
|
Must disclose if high viral load.
If the viral load is increasing
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Child schooling and long visitations
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The problem of boarding schools
Extended visitations to grandparents and aunts
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Unfavourable family environment
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Child mistreatment at home
Domestic violence
Depressive home environment
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Lack of disclosure standards for the clinic staff
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No disclosure SOPs at the facility
No specific documentation to follow during the disclosure
|
Disclosure role confusion
|
It is the caregiver’s role to disclose.
Disclosure is the responsibility of the parent
|
The themes and sub-themes are explained below:
3.2.1 HIV Disclosure Enablers to Children
This theme represents factors that positively influenced HIV disclosure to children on ART in this study. Four (4) subthemes were identified under this theme: having strong child peer support systems, availability of disclosure standards/guidelines, offering social and psychological spaces for clients to vent their issues and having disclosure-promoting practices at the facility. Each of these facilitators is described below in detail.
Having strong child peer support systems
Repeatedly, providers acknowledged that before disclosure of HIV status, children needed to attend the child and adolescent peer support group on the designated specific child clinic days for the child to receive peer support that in turn would facilitate the disclosure process to flow smoothly. Providers recounted that during the specialized child clinic days, experienced children on ART called adolescent peers share their disclosure and adherence experiences which inspires new members, as narrated by the following informants:
We have a child peer support network led by YAPS [Young Person and Adolescent Peer Supporter], which supports new children in the clinic. Since they are all in the same age bracket, they share the challenges they face at their respective homes, then refer to the health workers for additional support (Female participant, 35 years old and nursing officer with 11 years of experience in HIV care).
Since they are children 12 years and above, we use agemate peers because we want to build trust among these children to know that they are not experiencing the problems alone (male participant, 32 years old and clinical officer with 4 years of experience in HIV care).
Availability of HIV disclosure standards/guidelines
Providers explained that having disclosure standards or guidelines at the facility including routine assessments for disclosure or disclosure screening checklists was vital for every child who is due to receive disclosure of their HIV diagnosis. Additionally, informants described that receiving specific training in HIV disclosure counselling improved disclosure practices in the facilities. Providers consistently reported that during the national rollout of the consolidated policy for the prevention and treatment of HIV in Uganda [37], there was a section on HIV disclosure to children and adolescents. They routinely cross-check with these standards to gain some insights into facilitating HIV disclosure to the children as illustrated by the following informants:
In the consolidated HIV care and treatment guidelines, the ministry included a component on disclosure that we consult to get a skill or two on how to provide disclosure to children (Female participant, 40 years old and medical doctor with 12 years of experience in HIV care).
There is a section on the ART card that helps us to support disclosure to children (Male participant, medical officer, 31 years old).
Offering social and psychological spaces for clients to ventilate their issues.
Participants continually mentioned that having good relationship skills and possessing the quality of empathic understanding was critical in facilitating the disclosure of HIV diagnosis to children in the facilities. Providers explained that their colleagues with such virtues unconditionally provide ample time to listen to children’s concerns without bias and prejudice as explained by the following informants:
If you make the child close to you, she or he will tell you many things. From there, you begin the HIV disclosure process (female participant; 54 years old; counsellor with 17 years of experience in HIV care).
Children at this facility are nurtured by specific counsellors. Most call them their “mummy” Disclosure was made easy that way. Even children themselves get phones and call their ‘mummies’ (male participant, 32 years old and clinical officer with 4 years of experience in HIV care).
In addition, participants repeatedly emphasized that caregivers need to be given social space to share or air out their challenges regarding paediatric disclosure. This was specifically important when caregivers bring children for clinic appointments and refill visits as described by these informants below:
The parent will come to you and tell you that the child is pestering me she wants to know why she takes medicine. So, what you do is that you go to the counselling room, and you talk about everything. So, that is where you begin to plan disclosure to the child (Female participant; 54 years old; counsellor with 17 years of experience in HIV care).
Disclosure promoting practices at the facility.
Having disclosure-promoting practices at the facility helped providers to improve HIV status disclosure to children. The practice involves routinely asking caregivers what and how much their children know about HIV at every clinic visit followed by routinely checking the cognition of the child regarding the reasons for daily medications. By so doing, every child that is due for disclosure receives timely process-oriented disclosure of their HIV diagnosis as narrated by the following informants:
At every clinic visit, I check the understanding of each child in line with why they are taking drugs (Female participant, 40 years old and a medical doctor with 12 years of experience in HIV care).
Whenever every parent enters the counselling room with a child, a healthcare provider assesses for disclosure except if the child has not reached the rightful disclosure age (Female participant; 54 years old; counsellor with 17 years of experience in HIV care).
3.2.2 HIV Disclosure Impediments to Children
This theme represents factors that negatively influenced HIV disclosure to children on ART in this study. Five (5) subthemes were identified under this theme: prioritizing children with high viral load, child schooling and long visitations, unfavourable family environment, lack of disclosure standards for the clinic staff and disclosure role confusion.
Prioritizing children with high viral loads for disclosure
The practice of prioritizing children with high viral loads for disclosure denied many eligible children from receiving disclosure of their HIV diagnosis in this setting. This is because providers reasoned that non-viraemic children were, considered to be thriving well, even though they had reached the cognitive capacity to conceptualize their HIV illness. Providers narrated that disclosure was being prioritized for children with high viral loads because such children have an increased risk of developing long-term sequelae than the non-viraemic ones. This practice is contrary to standard guidelines by the Ugandan Ministry of Health (MOH) [14] and WHO [15]. The following informants’ responses below emphasize these arguments:
We only look out for children with a high viral load for disclosure (female participant, 40 years old and medical doctor with 12 years of experience in HIV care).
High viral load confirms that the child does not take the medicine well because he does not know what he is suffering from…so you must disclose to the child such that he knows the reason why he takes the medicine (male participant, 32 years old and clinical officer with 4 years of experience in HIV care).
We begin to initiate HIV disclosure when we realize that the children’s viral load is increasing (Female participant; 54 years old; counsellor with 17 years of experience in HIV care).
Child schooling and long visitations
Participants continually narrated that schooling particularly boarding schooling hindered disclosure of HIV diagnosis schedules as children were never with caregivers during drug refills and clinic visits. Even school authorities were blinded about the true rationale for daily medications. Informants further explained that some children, although not in boarding schools, go for long visitations to grandparents or aunts and carry drugs with them with instructions on daily medications without knowing the reasons. So, relatives find it hard to explain for fear of indirectly disclosing the mother’s HIV status.
We had a 14-year-old girl who did not know the reason for her daily medication. She was brought to the facility with a high viral load. When I asked her mother why the situation was like that, the mother said that it was because the child was in a boarding school (Female participant; 54 years old; counsellor with 17 years of experience in HIV care).
We have a lot of disclosure problems with children who go for long visitations yet are unaware of their HIV diagnosis. Children are sent to grandparents or aunts who mind less about children’s disclosure well-being (Female participant, 40 years old and medical doctor with 12 years of experience in HIV care).
Unfavourable family environment
Providers narrated that when they assess the social environment where some children live, it becomes difficult for them to facilitate disclosure to the children as disclosure would exacerbate the status quo and children lose trust in the providers and the healthcare system. Providers reasoned that such children need psychosocial counselling to get out of the current mistreatment before disclosure is planned as illustrated by the following excerpts:
Most undisclosed children on ART come to the facility when they are mistreated and overworked at home. You cannot disclose to them in that scenario because they can lose trust in you and you can never regain that trust (male participant, 31 years old and medical officer with 2 years of experience in HIV services).
The nature of the family the child is coming from matters a lot. Some children are tortured. They come here with symptoms of isolation and depression. So, disclosure is not possible as it can worsen the depression (Male participant, a 53-year clinical officer with 10 years of experience in HIV care).
Lack of disclosure standards for the clinic staff
Providers explained that they did not have a harmonized process of conducting disclosure to children taking daily ART. Some facilities lacked standard operating procedures (SOPs) or strategies to support the disclosure process. This affected disclosure planning, assessment, and evaluation in some of the facilities as illustrated by the following excerpts:
We do not have any SOPs at the facility to guide disclosure. We just dive in and provide the disclosure. There are no specific standards that we follow (female participant, 32 years old and clinical officer with 8 years of experience in HIV care).
We do not have any documents that we follow to disclose to children. It is not there. I have never seen it (Female participant; 54 years old; counsellor with 17 years of experience in HIV care facility).
Disclosure role confusion
Informants believed that HIV status disclosure to children is not part of their responsibilities. Providers narrated that disclosing HIV status to children is entirely the obligation of biological caretakers who ideally infected the children. They (healthcare providers) needed to come in only when caregivers encountered challenges with the disclosure process. It is because of this thinking that some healthcare providers have not even bothered to acquire the necessary skill set needed to provide professional disclosure to children living with HIV.
I do not take responsibility for disclosing this to the child. It is the caregivers’ role to disclose (female participant; 37 years old and counsellor with 5 years of experience in HIV care).
HIV disclosure is the responsibility of the parent/caregiver (male participant, 32 years old and clinical officer with 4 years of experience in HIV care)
Frankly, I have never disclosed this to any child because disclosure should be done by the parent since it is them [parent] that infected child (Female participant; 32 years old and clinical officer with a year’s experience in HIV care).