The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design of the Study
2.2. Data Collection
2.3. Data Analysis
2.4. Ethical Considerations
3. Results
3.1. Description of the Study Participants
3.2. Themes
3.2.1. Informing Adolescents of their HIV-Positive Status.
Deciding the Age to Tell Children
“I don’t think there is a specific time or age that a child could be ready, but every time the healthcare worker meets the child, they should assess the maturity to determine readiness.” (FDG 4: Nurse).
“The important thing is to consider the age of the child…, check if the child is really matured to understand the disclosure.” (FGD 1; Lay counsellor).
“Personally, I think at least at the age of 10 years the child has some light and can understand better because this is when puberty starts.” (FGD 1: Social worker).
Deciding Who Should Tell the Child
“I say it is the parent..., parents know their children. I think disclosure is the right that should be given to the parent.” (FGD 1: Lay counsellor).
“The caregiver should initiate disclosure. The child trust the family more than the nurses at the clinic. Caregiver-initiated disclosure builds trust to the child and helps him/her to believe what the healthcare workers will tell her at the clinic.” (FGD 4: Nurse).
“The reluctance of parents to disclose to their children leaves us with no option but to disclose to the children ourselves.” (FGD 7: Nurse).
“Healthcare workers should disclose because they have more HIV-related information than the caregivers.” (FGD 1: Social worker).
I can say the healthcare worker because parents sometimes give false information, they don’t explain why or not give all information, they tell children that they will die if they don’t take treatment without the actual information” (FGD 1: Social worker).
“I intervened in children who defaulted because they were told false information, they were told that have heart disease. I provide ongoing counselling to support them and make appointments until adherence to treatment” (FGD 1: Dietician).
“I was exposed a lot to children who were not disclosed well or lied to by parents. Children were told that they are taking TB treatment and because they start to understand that TB treatment is six months they ask questions why are they still continuing to take such a treatment beyond the six months” (FGD 2: PN).
“I think the health worker can initiate disclosure but do it in the presence of the caregiver. During this process, both the caregiver and the health worker should talk, because the role of the health worker is to support the caregiver.” (FGD 7: Nurse).
“The caregiver and the health worker should work together during disclosure because it is the health worker who has more information relating to health matters, and is in a better position to explain what will happen if the treatment is not taken as prescribed.” (FGD 8: Nurse).
3.2.2. The Social Contexts That Influence Disclosure
Caregivers’ Acceptance of Thier Own HIV Status
“Sometimes parents do not disclose because they are scared that the child will tell other people about the HIV status, and by so doing reveal his/her status as well as that of the parent; while the parent was not ready for other people to know her HIV status.” (FGD 4; Nurse).
Caregiver’s Knowledge about HIV and Disclosure
“Parents are afraid that the child might ask questions about how they contracted HIV. So, parents are scared to be confronted by such questions from children.” (FGD 3: Lay counsellor).
“When the mother realises that she will not be able to answer questions about how the child became infected, she then avoids disclosing.” (FGD 8: Nurse).
“One parent approached me and told me that she wanted to disclose to her child but did not know how. This child started taking treatment when she was 9 years old and the mother came with her to me when she was 13 years old.” (FGD 1: Social worker).
Child too Young to Understand HIV
“Parents think that children are too young to understand, generally, they won’t understand hence they don’t disclose.” (FGD 5: Dietician).
“Parents do not disclose because they believe that the child is not yet matured enough to understand what is happening regarding HIV (FGD2; lay counsellor).
“Parents delay disclosing to their children and say that they are still waiting for child to be matured and ready in order to tell him/her about his/her HIV status (FFGD 6: PN)/
3.2.3. Fearing the Consequences of Telling
Child’s Negative Reaction to Disclosure
“They think disclosure will lead to children isolating themselves from other people because of the thought that they will die.” (FGD 5: Social worker).
“Sometimes the mother is scared that the child may commit suicide.” (FGD 4: Nurse).
“Other parents don’t disclose because they fear that they might lose their children, if the child discovers that she was infected through them.” (FGD 7: Nurse).
Concerns That the Child Cannot Keep HIV Secret
“The child might go and talk to other children; and the children will be not able to keep that secret because children don’t understand confidentiality.” (FGD 3: Lay counsellor, 34 years).
Subsequent Stigma and Discrimination
“The society looks at you with a different eye when you are HIV-positive. The lack of acceptance within homes and society drives those who are HIV-positive to live in constant denial of their condition.” (FGD 7: Nurse).
Being Blamed by the Child
“Parents feel responsible for passing the disease to the children. That’s why they don’t want to disclose.” (FGD 1: Dietitian).
“The other thing that causes the parent to fear, is the thinking that the child might hate her for the rest of his/her life, blaming her of infecting him/her.” (FGD 8: Nurse).
“I think the parent feels guilty and thinks that the child will blame her for carelessness and for failing to take measures to protect her/him from HIV infection. So, the parent is avoiding to be blamed and accused for the reason that the child is positive.” (FGD 6: Nurse).
3.2.4. Consequences of Delayed Disclosure
Contributes to Treatment Default
“Children get tired of taking treatment so they stop taking treatment if they don’t understand the reasons for taking it continuously.” (FGD 2: Nurse).
“I have an orphan teenage boy who started taking treatment at birth under the supervision of the grandfather, but when he entered adolescence, he stopped the treatment due to lack of knowledge about his status.” (FGD 4: Lay counsellor).
Poor Clinical Outcomes
“Deception about the nature of the disease for children leads to the decline of children’s health status as they become sick due to poor adherence. One child had to be changed to the second line of treatment.” (FGD 1: Dietician).
“I realised that unsuppressed viral loads among these children are due to non-adherence of treatment. They sometimes stop taking treatment since they don’t know why they are taking the treatment for.” (FGD 2: Nurse).
Inconsistent and Episodic Adherence to ART
“I have a case of two orphaned children aged 6 and 13 years old with high viral loads due to non-adherence to treatment. The grandmother explained that they are missing treatment because they come back home very late at night. These children don’t even know why they are taking treatment as no one ever told them about it.” (FGD 7: Nurse).
Children Are Denied a Chance for Self-Care
“Every time the young one takes her ARVs she also demanded that the older sibling should be given the treatment. She constantly asked why she was the only one taking the treatment. Whenever she fetched her treatment she also distributed to other children in the house and said that they must also drink.” (FGD 8; Nurse).
“I discovered during a home visit that he was throwing the tablets under the bed because he was sleeping alone.” (FGD 4: Lay counsellor).
Leads to Accidental Disclosure
“If the parent does not disclose, the child may discover his/her HIV status accidentally, which may cause denial for a very long time.” (FGD 3: Lay counsellor).
“Ooh! Just like what happened to me here. The child has been on ARVs for a very long time. I said to the child, ‘When you are HIV-positive you take this treatment’ and there…, the child started screaming. The child was just crying because he was on ARVs for so long without knowing that he is on HIV treatment. So accidents do happen.” (FGD 1: Nurse).
Risk of Secondary Transmission of HIV
“The disadvantage of non-disclosure during adolescence is that you may find the child has already started dating and practising unsafe sex.” (FGD 4: Nurse).
“Depending on their age, some of these children become sexually active at a very early age, for example at 11 or 12 years, so we do encourage them to use dual protection when engaging in sexual activities.” (FGD 7: Nurse).
4. Discussion
5. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
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Variables | Characteristics | Frequency (%) |
---|---|---|
Sex | Female | 46 (90.2) |
Male | 5 (9.8) | |
Designations of HCWs | Lay counsellor | 16 (31.3) |
Enrolled nursing assistant | 1 (1) | |
Enrolled nurse | 2 (3.9) | |
Professional nurse | 24 (47) | |
Social worker | 5 (9.8) | |
Dietician | 3 (5.9) | |
Age group | 20–29 | 5 (9.8) |
30–39 | 15 (29.4) | |
40–49 | 16 (31.4) | |
50–59 | 14 (27.4) | |
60–69 | 1 (2) | |
Paediatric HIV experience | <1 year | 4 (7.8) |
1–4 years | 11 (21.6) | |
5–10 years | 19 (37.3) | |
>10 years | 17 (33.3) | |
Ever disclosed HIV to a child? | Yes | 36 (70.6) |
No | 15 (29.4) | |
Ideal age of disclosure | 8–12 years | 40 (80) |
<12 years | 2 (4) | |
>8 years | 8 (16) | |
HCW who have disclosed | Lay counsellor | 13 out of 16 |
Enrolled nursing assistant | 0 out of 1 | |
Enrolled nurse | 0 out of 2 | |
Professional nurse | 19 out of 24 | |
Social worker | 3 out of 5 | |
Dietician | 1 out of 2 |
Informing Children of Their HIV-Positive Status | Deciding the Age to Tell the Child |
Deciding Who Should Tell the Child | |
The social contexts that influence disclosure to children | Caregiver and child characteristic The caregiver has not accepted own HIV status Caregiver knowledge about HIV and disclosure Child too young to understand HIV |
Fearing the consequences of telling Child’s negative reaction to disclosure Concerns that the child cannot keep HIV secret Subsequent stigma and discrimination Being blamed by the child | |
Consequences of delayed disclosure | Contributes to treatment default Inconsistent and episodic adherence to ART Poor clinical outcomes Children are denied a chance for self-care Leads to accidental disclosure Risk of secondary transmission of HIV |
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Madiba, S.; Diko, C. The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study. Children 2020, 7, 289. https://doi.org/10.3390/children7120289
Madiba S, Diko C. The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study. Children. 2020; 7(12):289. https://doi.org/10.3390/children7120289
Chicago/Turabian StyleMadiba, Sphiwe, and Cynthia Diko. 2020. "The Consequences of Delaying Telling Children with Perinatal HIV About Their Diagnosis as Perceived by Healthcare Workers in the Eastern Cape; A Qualitative Study" Children 7, no. 12: 289. https://doi.org/10.3390/children7120289