HIV/AIDS is increasingly affecting the health and welfare of children and undermining hard-won gains of child survival in highly affected countries [
One of the most difficult issues that families with HIV-infected children face is when and how to talk about HIV to their children. HIV-positive status disclosure to infected children and adolescents should take place in a supportive environment with collaboration and cooperation among caregivers and health care providers. Disclosure is contingent on the caregiver’s acknowledgement of the illness, the readiness to disclose, and child’s cognitive skills and emotional maturity [
Despite emerging evidence of the benefit of disclosure, when and how to disclose the diagnosis of HIV to children remain a clinical dilemma [
Children react to HIV disclosure in different ways and it is not uncommon for relatives to disagree about disclosing HIV-related information to children. Disclosure has to be individualized taking into consideration the particular child, parent (s), family, household, and community. HIV diagnosis disclosure entails communication about a potentially life-threatening, stigmatized, and transmissible illness, and many caregivers fear that such communications may create distress for the child [
The American Academy of Pediatrics strongly encourages disclosure of HIV-positive status to school-age children [
An institution-based cross sectional study design was carried out from March to April, 2012 at the three hospitals of North Gondar Zone. North Gondar Zone is one of the 11 zones in the Amhara National Regional State.
All HIV-positive children aged 5–15 years who were on care and support followup at the pediatric ART clinics of the three hospitals (Gondar, Metema, and Dabark) in North Gondar Zone. All caregivers of the children enrolled in the chronic HIV care at pediatric ART units of the three hospitals were included. Children who came by themselves or with no caregiver or parent were excluded because of ethical concerns.
Disclosure refers to when the caregiver said that the child knows his/her HIV/AIDS diagnosis regardless of who told the child.
Data were collected by an interview technique using a structured questionnaire which was first prepared in English then translated to the local language Amharic. A clinical nurse working at the pediatric ART clinic of each hospital and supervised by a supervisor collected the data. The prepared questionnaire was pretested and structured accordingly in a logical manner into sociodemographic, clinical characteristics and HIV-positive disclosure parts. The returned questionnaires were checked for completeness on site by the supervisor. The data were entered in to EPI INFO version 3.5.1 statistical software and analyzed by SPSS version 20.0. Frequencies and cross-tabulations were used to summarize descriptive statistics. Bivariate and multivariate analyses were performed to test associations. Variables having
Ethical clearance was obtained from the Ethical Review Board of the University of Gondar. Permission was obtained from the hospitals administration and the ART focal persons at each hospital. After the purpose of the study was explained, verbal consent was obtained from each caregiver. Interviews were carried out privately in a separate room in the hospitals. Participants also were informed that participation was on voluntary basis and that they can withdraw at any time if they are not comfortable about the questionnaire. Names or personal identifiers were not included in the written questionnaires to ensure participants’ confidentiality.
A total of 428 caregivers were interviewed. Of these, 343 (80.1%) were from Gondar university referral hospital. Three hundred thirty-one (77.3%) of the caregivers were females, 368 (86%) were orthodox Christians, and the majority (89.5%) were urban residents. About half (51.4%) of the caregivers had a monthly income of 300–999 Ethiopian Birr per month. Nearly two thirds (65.4%) of the caregivers were biological parents of the children and one third were daily labourers.
Almost half (49.3%) of children were males and the mean age of children was
Sociodemographic characteristics of caregivers and children in North Gondar Zone, Northwest Ethiopia, 2012 (
Variables | Frequency | Percent |
---|---|---|
Site of data collection | ||
Gondar university hospital | 343 | 80.1 |
Dabark hospital | 57 | 13.3 |
Metema hospital | 28 | 6.5 |
Sex of caregiver | ||
Male | 97 | 22.7 |
Female | 331 | 77.3 |
Age | ||
≤30 | 126 | 29.4 |
31–40 | 173 | 40.4 |
41–50 | 64 | 15.0 |
51–60 | 32 | 7.5 |
≥61 | 33 | 7.7 |
Religion of caregiver | ||
Orthodox christian | 368 | 86.0 |
Muslim | 43 | 10.0 |
Protestant | 17 | 3.9 |
Residence of the caregiver | ||
Urban | 383 | 89.5 |
Rural | 45 | 10.5 |
Monthly family income in Birr | ||
<300 | 93 | 21.7 |
300–999 | 220 | 51.4 |
≥1000 | 115 | 26.9 |
Relation with the child | ||
Biological parent | 280 | 65.4 |
Grandparent | 63 | 14.7 |
Siblings | 29 | 6.8 |
Relatives | 41 | 9.6 |
Others | 15 | 3.5 |
Educational status of the caregiver | ||
No formal education | 168 | 39.2 |
Primary school (1–8) | 114 | 26.6 |
Secondary school (9–12) | 115 | 26.9 |
Above secondary school | 31 | 7.2 |
Occupation of caregiver | ||
House wife | 114 | 26.6 |
Government employed | 57 | 13.3 |
Farmer | 23 | 5.4 |
Merchant | 61 | 14.3 |
Daily labourer | 144 | 33.6 |
Others | 29 | 6.8 |
Sex of child | ||
Male | 211 | 49.3 |
Female | 217 | 50.7 |
Age of child | ||
<10 | 203 | 47.4 |
≥10 | 225 | 52.6 |
Educational status of child | ||
Not started education | 61 | 14.3 |
Kindergarten | 48 | 11.2 |
Primary school (1–8) | 304 | 71 |
Secondary school (9–12) | 15 | 3.5 |
With whom currently living | ||
Biological parent | 284 | 66.4 |
Siblings | 27 | 6.3 |
Relatives | 100 | 23.4 |
At orphanage camp | 12 | 2.8 |
Others | 5 | 1.2 |
Lost any of his/her families | ||
Yes | 237 | 55.4 |
No | 191 | 44.6 |
Lost who |
||
Mother only | 58 | 24.5 |
Father only | 85 | 35.8 |
Both mother and father | 94 | 39.7 |
Nearly two third (61.9%) of the caregivers were HIV-positive of whom 92.5% were on ART and 86.4% had disclosed their HIV-positive status to someone else.
Majority (81.3%) of the children had a WHO clinical stage I disease. Majority, that is, 344 (80.4%) children, had history of opportunistic infections (OIs) and 42.5% were hospitalized. Three hundred forty-eight (81.3%) children were on ART at the date of interview (Table
Clinical characteristics of caregivers and children in North Gondar Zone, Northwest Ethiopia, 2012.
Variables | Frequency | Percent |
---|---|---|
HIV-positive status of the caregiver | ||
Positive | 265 | 61.9 |
Negative | 112 | 26.2 |
Not tested | 51 | 11.9 |
ART status of caregiver, |
||
On ART | 245 | 92.5 |
Before ART | 20 | 7.5 |
Disclosure of HIV-positive status of the caregiver, |
||
Yes | 229 | 86.4 |
No | 36 | 13.6 |
WHO clinical staging | ||
I | 348 | 81.3 |
II | 42 | 9.8 |
III | 33 | 7.7 |
IV | 5 | 1.2 |
History of OIs | ||
Yes | 344 | 80.4 |
No | 84 | 19.6 |
History of hospitalization | ||
Yes | 182 | 42.5 |
No | 246 | 57.5 |
ART status of child | ||
On ART | 348 | 81.3 |
Before ART | 80 | 18.7 |
Of the 428 children, 169 (39.5%, 95% CI: 34.8, 43.7) of the children living with HIV/AIDS were disclosed their HIV-positive status. The mean age at disclosure was 10.7 years (±2.3 years). Sixty-nine (40.8%) children were disclosed by their biological parents while 38.5% of children were disclosed by health care providers. Sixty-seven (39.6%) of the disclosers were HIV-positive. The prominent reasons for disclosure as mentioned by caregivers were “child thought to be matured” (44.4%) and repeated questionings of “what happened to me” (27.2%) by the child (Figure
Reasons for disclosing HIV-positive status to HIV-positive children in North Gondar Zone, Northwest Ethiopia, 2012.
Reasons for not disclosing HIV-positive status to HIV-positive children in North Gondar Zone, Northwest Ethiopia, 2012.
As clearly depicted on the multivariate logistic regression, caregiver’s relation with the child, age of the child and loss of a family member were independently and significantly associated with disclosure of HIV-positive status to HIV-infected children. However, factors related to the caregiver such as sex, religion, HIV-positive status, and educational status, as well as sex of the child, history of OIs, and ART status of children were not significantly associated with disclosure of HIV-positive status to HIV-infected children.
Accordingly, nonbiological parents were 4.14 (
Bivariate and multivariate analysis of factors associated with disclosure of HIV-positive status to HIV-infected children in North Gondar Zone, Northwest Ethiopia, 2012.
Variables | Disclosure status | Crude OR (95% CI) | Adjusted OR (95% CI) | |
---|---|---|---|---|
Disclosed | Not disclosed | |||
Sex of caregiver | ||||
Male | 34 | 63 | 0.78 (0.49, 1.25) | |
Female | 135 | 196 | 1.00 | |
Age of caregiver | ||||
≤30 | 33 | 93 | 1.00 | |
31–40 | 66 | 107 | 1.74 (1.05, 2.87) | |
41–50 | 28 | 36 | 2.19 (1.16, 4.13) | |
51–60 | 16 | 16 | 2.89 (1.27, 6.26) | |
>60 | 26 | 7 | 10.47 (4.15, 26.38) | |
Religion of caregiver | ||||
Orthodox christian | 144 | 224 | 1.00 | |
Muslim | 13 | 30 | 0.67 (0.34, 1.34) | |
Protestant | 12 | 5 | 3.73 (1.29, 10.82) | |
Relation with the child | ||||
Biological parent | 83 | 197 | 1.00 | 1.00 |
Not biological parent | 86 | 62 | 3.29 (2.17, 4.99) |
|
Educational status of caregivers | ||||
No formal education | 72 | 97 | 1.56 (0.69, 3.51) | |
Primary school | 36 | 77 | 0.98 (0.42, 2.3) | |
Secondary school | 51 | 64 | 1.67 (0.72, 3.87) | |
Above secondary school | 10 | 21 | 1.00 | |
Sex of child | ||||
Male | 88 | 123 | 1.20 (0.81, 1.77) | |
Female | 81 | 136 | 1.00 | |
Age of child | ||||
<10 | 26 | 177 | 1.00 | 1.00 |
≥10 | 143 | 82 | 11.87 (7.25, 19.44) |
|
Educational status of child | ||||
Not started education | 7 | 54 | 1.00 | |
Kindergarten | 2 | 46 | 0.335 (.07, 1.69) | |
Primary school (1–8) | 150 | 154 | 7.51 (3.31, 17.04) | |
Secondary school (9–12) | 10 | 5 | 15.43 (4.07, 58.41) | |
With whom currently living | ||||
Biological parent | 88 | 196 | 1.00 | |
Siblings | 13 | 14 | 2.07 (93, 4.58) | |
Relatives | 54 | 46 | 2.62 (1.64, 4.17) | |
At orphanage camp and others | 14 | 3 | 10.39 (2.91, 37.09) | |
HIV-positive status of caregivers | ||||
Positive | 78 | 187 | 1.00 | |
Negative | 60 | 52 | 2.76 (1.75, 4.36) | |
Unknown status | 31 | 20 | 3.72 (1.99, 6.92) | |
Lost any of his/her family | ||||
Yes | 119 | 118 | 2.84 (1.89, 4.29) |
|
No | 50 | 141 | 1.00 | 1.00 |
History of OIs | ||||
Yes | 147 | 197 | 2.10 (1.23, 3.57 ) | |
No | 22 | 62 | 1.00 | |
ART status of the child | ||||
On ART | 146 | 202 | 1.79 (1.05, 3.04) | |
Before ART | 23 | 57 | 1.00 |
In Ethiopia, due to the recent improvements in access to antiretroviral therapy, dramatic decline of mortality and morbidity of HIV-infected children has been observed [
In this study, 39.5% of HIV-positive children were disclosed their HIV-positive status. This finding is similar to studies conducted in USA which reported a disclosure rate of 35–43% [
This finding was somewhat higher as compared to studies conducted in Poland (16.2%) [
Age was identified as a factor for disclosure in this study and in another study conducted in Ethiopia [
In our study, the factors that were independently and significantly associated with disclosure were the age of the child, nonbiological parent relation with the child, and loss of family member. Consistent with previous studies done in Ghana and London, children were more likely to be disclosed if they were orphaned [
The results of our study supported previous studies done in Nigeria, Thailand, London, and Massachusetts [
In this study, nonbiological caregivers were more likely to disclose the child’s HIV-positive status than biological caregivers. This finding is in agreement with studies done in Philadelphia and Thailand [
This study has the following strengths and limitations. The sample size is relatively larger than other studies done in sub-Saharan Africa, and generalization can be made to children on chronic HIV/AIDS care in Ethiopia. But as a cross-sectional study, the associations observed may not be causal. Because of lack of data on adherence to treatment, we could not include it in the analysis. Furthermore, the study did not explore the benefits of disclosure on adherence and clinical improvement in HIV/AIDS.
The rate of disclosure of HIV-positive status to HIV-infected children is low in this study. Non biological parent caregivers, children older than 10 years of age, and loss of family member were independently and significantly associated with disclosure of HIV-positive status to HIV-infected children. Hence, it is important to target young children living with their biological parents and those having young parents. Guideline for disclosure of children with HIV/AIDS has to be established in Ethiopian context. We recommend further studies to be undertaken to explore the benefits of disclosure of HIV-positive status to HIV-infected children.
The authors declare that they have no conflict of interests.
D. Negese designed the study, performed the statistical analysis, and drafted the paper. K. Addis, A. Awoke, Z. Birhanu, D. Muluye, S. Yifru, and B. Megabiaw participated in the study design, data collection, and paper writing. All authors contributed to the data analysis and read and approved the final paper.
The authors are very grateful to the University of Gondar for technical and financial support for this study. Their special thanks and appreciation also are due to all the study participants who voluntarily participate in this study.