Globally, it is estimated that 36.7 million people live with HIV/AIDS. Of these, 1.8 million are children less than 15 years of age. In 2015, it was estimated that there were 150,000 children less than 15 years who became newly infected with HIV. Most of these children live in Sub-Saharan Africa and are infected by their HIV-positive mothers during pregnancy, childbirth, or breastfeeding [
Although there has been significant improvement in ART coverage among children, it is still low compared to adults. At the end of 2016, it was estimated that only 43% of children aged <15 years living with HIV/AIDS were receiving ART [
In 2011, WHO released a guideline on HIV status disclosure in children [
There is evidence that HIV status disclosure is associated with improved health among children and halted disease progression [
This study was conducted in pediatric HIV care and treatment centres in Iringa and Mbeya regions, Southern Highlands Zone of Tanzania. The two regions have the highest prevalence of HIV in the country. The Iringa region borders the dry belt of central Tanzania in the north and south by Lake Nyasa. It lies between latitudes 7° 05° 32 and 12 South and longitude 33° 47° 32 to 36 east of Meridian. Iringa region is contiguous with the Dodoma and Singida regions in the north, Mbeya to the west, Morogoro in the east, and Ruvuma in the south. Lake Nyasa separates Iringa Region and Malawi in the southwestern Tanzania. It has four districts with a population of 941,238 (NBS, 2013).
The Mbeya region lies between latitude 70 and 90 31’ south of the Equator and between longitude 320 and 350 east of Greenwich. Mbeya shares borders with the Republic of Malawi and Zambia to the south, Songwe Region to the west, Singida and Tabora regions to the north, and Iringa and Njombe regions to the east. The region has five districts with a total population of 2,707,410 people (NBS, 2013).
This was an unmatched case control study. The chances that the controls could be healthier than cases were controlled by random selection of participants.
The study population was children living with HIV/AIDS who stayed in Iringa or Mbeya region in Southern Highlands Zone, Tanzania. Inclusion criteria were HIV-infected children between 6 and 17 years of age on ART for not less than six months, who were attending pediatric HIV care and treatment centres in the Southern Highlands Zone, Tanzania. The age range from 6 to 17 years was selected because WHO 2011 recommends age 6 as a starting point for disclosure and age 17 is considered as childhood age before a child reaches 18 years.
A sample size was 309 subjects, computed by using WINPEPI program (Abramson 2004, 2011) computer software. The data computed include difference between means, significance level = 5%, power = 80%, ratio B: A = 2, SD in A: 32, SD in B: 28, and difference = 10.
Approximately 95% CI for difference between means (D) = D - 7.001 to D + 7.00.
Two regions (Mbeya and Iringa) among seven regions in Southern Highlands Zone were purposively selected because they had higher HIV prevalence. A simple random sampling using a lottery technique was used to select one district from each selected region whereby Mbeya city council and Iringa municipal district were selected. Then five CTC per district were purposively selected based on the number of clients they serve to ensure that the needed sample size could be attained. The required sample of participants was equally divided among selected centres. HIV-infected children attending services from pediatric HIV care and treatment centres of selected hospitals from June 2016 six months before the survey were identified from the registers. Then, using the patients register, cards, and files, children on ART for at least six months were randomly enrolled to the study. Thereafter, caregivers were oriented on the objectives and importance of the study and then asked for consent before being enquired about the HIV status disclosure to their children until the required sample was obtained. During sorting and coding of subjects before analysis, 102 HIV disclosed and 207 nondisclosed participants were identified as shown in Figure
Showing sampling flow chart.
Structured modified WHO standard questionnaire translated in Swahili was used. Questionnaires consisted of a series of closed ended questions aimed at capturing necessary information to meet the study objectives. Research Assistants have undergone training on how to administer the questionnaire before data collection. Questions were elaborated and proper interview and writing of caregivers’ response were demonstrated. They were blinded about the study to avoid information bias. Using the patients’ register in CTC clinics, HIV-infected children between 6 and 17 years on ART for at least six months or more were identified. Assent and consent for the study were obtained from children and their caregivers, respectively. Caregivers who consented for the study were requested to respond to the questions by choosing the correct answer per each question.
The independent variables included socioeconomic status, parental relationship (biological parents or other), and demographic information of the participants and their guardians.
The dependent variables included HIV status disclosure, treatment adherence, and quality of life.
HIV status disclosure was measured by asking the parents/guardians of the participants the question
Treatment adherence was measured by using WHO adherence manual, 2007, with the scores categorized as >=95%= GOOD, 85-94%=FAIR, and <85%=POOR. Percentages were computed by the formula: fraction of drug missed per dispensed pills on the last visit
Quality of life was measured by using the 2012 World Health Organization Quality of Life standard tool (WHOQOL-BREF 2012 tool), whereby scores >=80 was considered high quality of life and <80 was considered to be low quality of life. Domains which were used in assessing the quality of life were (i) social relationship which included personal relationships, social support, and sexual activity, (ii) psychological health which included items such as bodily image and appearance, negative feelings, positive feelings, self-esteem, thinking, learning, memory, and concentration, (iii) physical health which included energy, fatigue, pain, discomfort, sleep, and rest, (iv) environmental health which included financial resources, freedom, physical safety and security, health and social care (accessibility and quality), home environment, opportunities for acquiring new information and skills, participation in and opportunities for recreation/leisure, physical environment and transport, and (v) spirituality/religion/personal beliefs which included religion/spirituality/personal beliefs.
SPSS version 20 was used to process and analyze data. Data were entered into computer software where they were cleaned and analyzed. Descriptive statistics of social demographic characteristics was conducted. Then, Chi square analysis was performed to test for factors related to HIV status disclosure and other outcome variables and adherence to treatment and quality of life, respectively. Variables which showed statistically significant relationship were included in bivariate and multiple logistic regression and p value of 0.05 was used for statistical significance.
Ethical clearance and approval to conduct the study were sought from the University of Dodoma Research and Ethics Committee. Permission to conduct the study in Iringa and Mbeya regions was sought from the Hospital Directors and District Medical Officers. Consent to participate in the study was sought from the parent/guardian of the child before asking for assent from the child. Participants were informed clearly on the aim, risks, and benefits of the study. Caregivers were interviewed in the absence of their children to minimize chances of exposing the child on some of the questions they were not prepared to answer. To ensure confidentiality, the information collected was kept anonymous by not including the names of the participants and their guardians as well as the names of the treatment centres.
After initial random selection of 309 participants who were included in the analysis, only 102 (33%) had their HIV status disclosed to them. The mean age of participants with disclosed status was 12.39 (SD=3.015) whereas among those with undisclosed status it was 11.29 (SD=3.002). Among those with disclosed HIV status, the majority were in the 14–17-year age group (38.2%), male (51%), and in primary or less education level (63.7%) and had one or both of their biological parents (59.8%). Details of these findings are shown in Table
Distribution of study participants by sociodemographic characteristics (N=309).
| | |
---|---|---|
| | |
Age of the child: | ||
6–9 years | 29 (28.5) | 53 (25.6) |
10–13 years | 34 (33.3) | 100 (48.3) |
14–17 years | 39 (38.2) | 54 (26.1) |
Sex of the child: | ||
Female | 50 (49) | 104 (50.2) |
Male | 52 (51) | 103 (49.8) |
Child/caregiver relationships: | ||
Biological parent(s) | 61(59.8) | 129 (62.3) |
Others | 41(40.2) | 78 (37.7) |
Child’s level of education: | ||
Primary or less | 65 (63.7) | 171(82.6) |
Secondary or higher | 37 (36.3) | 36 (17.4) |
Caregiver level of education: | ||
Primary or less | 5 (4.9) | 25 (12.1) |
Secondary or high | 97 (95.1) | 182 (87.9) |
Caregiver income: | ||
Employment | 70 (68.6) | 135 (65.2) |
Others | 32 (31.4) | 72 (34.8) |
Chi square analysis as indicated in Table
Factors related with HIV status disclosure, among children between 6 and 17 years on ART, in Southern Highlands Zone, Tanzania (N=309).
| | | |||
---|---|---|---|---|---|
| | ||||
| | | | ||
Age of the child: | |||||
6–9 years | 53 | 64.6 | 29 | 35.4 | |
10–13 years | 100 | 74.6 | 34 | 25.4 | <0.05 |
14–17 years | 54 | 58.1 | 39 | 41.9 | |
Child’s sex: | |||||
Males | 104 | 67.5 | 50 | 32.5 | 0.840 |
Females | 103 | 66.5 | 52 | 33.5 | |
Child/caregiver relationship: | |||||
Biological parents | 128 | 67.7 | 61 | 32.3 | 0.730 |
Others | 79 | 65.8 | 41 | 34.2 | |
Child’s level of education: | |||||
Primary or less | 173 | 72.7 | 65 | 27.3 | <0.001 |
Secondary or high | 34 | 47.9 | 37 | 52.1 | |
Caregiver level of education: | |||||
Primary or less | 155 | 70.5 | 65 | 29.5 | <0.05 |
Secondary or high | 52 | 58.4 | 37 | 41.6 | |
Caregiver income: | |||||
Employment | 55 | 61.1 | 35 | 38.9 | 0.159 |
Others | 152 | 69.4 | 67 | 30.6 |
Table
Crude and adjusted odds ratio for factors associated with HIV status disclosure, among children between 6 and 17 years on ART therapy, in Southern Highlands Zone, Tanzania (N=309).
| | | | | | |
---|---|---|---|---|---|---|
Age of child: | ||||||
6–9 years | Ref | |||||
10–13 years | 18.384 | 2.449, 138.018 | <0.01 | 19.178 | 2.535, 145.102 | <0.05 |
14–17 years | 64.755 | 8.664, 483.997 | <0.001 | 65.723 | 8.463, 510.421 | <0.001 |
Child’s level of education: | ||||||
Primary or less | Ref | |||||
Secondary or high | 2.846 | 1.648, 4.915 | <0.001 | 0.966 | 0.519, 2.098 | 0.904 |
Caregiver level of education: | ||||||
Primary or less | Ref | |||||
Secondary or high | 1.664 | 0.997, 2.776 | 0.051 | 1.125 | 0.601, 2.107 | 0.713 |
After adjusting for confounders in a multiple logistic regression analysis, findings showed that only the child’s age was significantly associated with HIV/AIDS status disclosure. Compared to children in the 6- to 9-year age group, those aged between 10 and 13 years and 14 and 17 years had 19 and 66 (AOR=65.755, p<0.001) times higher odds of HIV status disclosure, respectively.
Table
Relationship between HIV status disclosure and ART adherence, among children between 6 and 17 years on antiretroviral therapy, in Southern Highlands Zone, Tanzania (N=309).
| | | |
---|---|---|---|
| | ||
Age of child: | |||
6–9 years | 3 (3.7) | 79 (96.3) | |
10–13 years | 7 (5.2) | 127 (94.8) | 0.063 |
14–17 years | 11 (11.8) | 82 (88.2) | |
HIV status disclosure: | |||
No | 19 (9.2) | 188 (90.8) | <0.05 |
Yes | 2 (2.0) | 100 (98.0) | |
Child’s sex: | |||
Male | 10 (6.5) | 144 (93.5) | 0.833 |
Female | 11(7.1) | 144 (92.9) | |
Child/caregiver relationship: | |||
Biological parents | 9 (4.8) | 180 (95.2) | 0.075 |
Others | 12 (10.0) | 108 (90.0) | |
Caregiver income | |||
Employment | 7 (7.8) | 83 (92.2) | 0.660 |
Others | 17 (6.4) | 205 (93.6) | |
Ever hospitalized: | |||
Yes | 13 (6.4) | 190 (93.6) | 0.705 |
No | 8 (7.5) | 98 (92.5) | |
Child’s level of education: | |||
Primary or less | 15 (6.3) | 223 (93.7) | 0.528 |
Secondary or high | 6 (8.5) | 65 (91.5) | |
Caregiver level of education: | |||
Primary or less | 17 (7.7) | 203 (92.3) | 0.307 |
Secondary or high | 4 (4.5) | 85 (95.5) |
Table
Crude and adjusted analysis for the association between HIV status disclosure and ART adherence, among children between 6 and 17 years on antiretroviral therapy in Southern Highlands Zone, Tanzania (N=309).
| | | | |
---|---|---|---|---|
HIV status disclosure: | ||||
No | Ref | |||
Yes | 4.545(1.029, 20.071) | <0.05 | 8.173(1.765, 37.842) | <0.05 |
Age of child: | ||||
6 – 9 years | Ref | |||
10–13 years | 0.349(2.042, 2.907) | 0.330 | 0.288(0.034, 2.423) | 0.252 |
14-17 years | 0.189(0.024, 1.502) | 0.115 | 0.095(0.011, 0.850) | <0.05 |
Caregivers education: | ||||
Primary or less | Ref | |||
Secondary or high | 1.578(0.509, 4.893) | 0.430 | 1.825(0.543, 6.138) | 0.331 |
Across all domains, quality of life was comparatively high among children with HIV status disclosure compared to those without HIV status disclosure (Figure
Description of quality of life by domains in relation to HIV status disclosure to children 6-17 years living with HIV/AIDS.
Table
Relationship between HIV status disclosure and quality of life, among children between 6 and 17 years on antiretroviral therapy, in Southern Highlands Zone, Tanzania (N=309) Chi square.
| | | |
---|---|---|---|
| | ||
HIV status disclosure: | |||
No | 102 (49.3) | 105 (50.7) | <0.001 |
Yes | 25 (24.5) | 77 (75.5) | |
Child/caregiver relationship: | |||
Biological parents | 87 (46.0) | 102 (54.0) | <0.05 |
Others | 40 (33.3) | 80 (66.7) | |
Sex of the child: | |||
Males | 69 (44.8) | 85 (55.2) | 0.187 |
Females | 58 (37.4) | 97 (62.60 | |
Age of the child: | |||
6 to 9 years | 30 (55.6) | 24 (44.4) | <0.05 |
10 to 13 years | 54 (40.0) | 81 (60.0) | |
14 to 17 years | 43 (35.8) | 77 (64.2) | |
| |||
ART adherence: | 10 (47.6) | 11(52.4) | 0.529 |
No | 117 (40.6) | 171(59.4) | |
Yes | |||
Caregiver income | |||
Employment | 40 (44.4) | 50 (55.6) | |
Others | 87 (39.7) | 132 (60.3) | 0.444 |
Child’s level of education: | |||
Primary or less | 99 (41.6) | 139 (58.4) | 0.745 |
Secondary or high | 28 (39.4) | 43 (60.6) | |
Caregiver level of education: | |||
Primary or less | 87 (39.5) | 133 (60.5) | 0.382 |
Secondary or high | 40 (44.9) | 49 (55.1) |
After adjusting for confounders, children with HIV status disclosure had more than three times high odds of having a good quality of life (AOR=3.283, CI: 1.791, 6.017) compared with those with undisclosed status. Children living with their biological parents had half the odds of having a good quality of life (OR=0.500, CI: 0.300, 0.834) compared with those living with a guardian other than their biological parents (Table
Crude and adjusted ratio for the association between HIV status disclosure and quality of life, among children between 6 and 17 years on ART, in Southern Highlands Zone, Tanzania (N = 309).
| | | | |
---|---|---|---|---|
HIV status disclosure: | ||||
No | Ref | |||
Yes | 3.203 (1.889, 5.432) | <0.001 | 3.283(1.791, 6.017) | <0.001 |
Age of the child: | ||||
6 to 9 years | Ref | |||
10 to 13 years | 2.165 (1.353, 3.464) | 0.111 | 1.403 (0.709, 2.776) | 0.331 |
14 to 17 years | 2.060 (1.068, 3.971) | <0.05 | 1.513 (0.656, 3.485) | 0.331 |
Sex of the child | ||||
Males | Ref | |||
Females | 1.451 (0.920, 2.289) | 0.110 | 1.602 (0.978, 2.625) | 0.061 |
Child/caregiver relationships: | ||||
Biological parent(s) | Ref | |||
Others | 1.796 (1.114, 2.888) | 0.016 | 0.500 (0.300, 0.834) | <0.05 |
ART adherence: | ||||
No | Ref | |||
Yes | 1.569 (0.619, 3.978) | 0.343 | 1.567 (0.578, 4.249) | 0.378 |
The current study aimed at determining factors associated with HIV status disclosure and its effect on treatment adherence and quality of life among children aged 6–17 years in Southern Highlands Zone, Tanzania. In this study, we found that HIV status disclosure was relatively low; only one-third of the participants were aware of their HIV status. We also found that HIV status disclosure was significantly associated with adherence to treatment and high quality of life in children living with HIV/AIDS in a low resource setting.
Since 2011, WHO set up a guideline which recommends HIV status disclosure at the age of 6 years and completed at the age of 12 years [
In our study, we found that HIV status disclosure was significantly associated with the age of the child where children aged 10 years and above were more likely to know their HIV status. At the age of 10 years and above, children are on the verge of change in almost all aspects of their lives and become more curious of whatever is going on around them. Similar findings have been reported earlier [
In this study, HIV status disclosure was found to be significantly associated with high treatment adherence. Previous studies assessing the association between disclosure and adherence came up with conflicting results. Most of the studies showed that HIV status disclosure improved adherence levels [
Studies assessing the association between disclosure and quality of life have come with inconsistent results. Several studies done have found that HIV status disclosure was associated with high quality of life [
Despite existence of WHO guideline on HIV status disclosure to HIV-infected children and adolescents, prevalence of disclosure was found to be low in this study and often done later after 10 years of age. HIV status disclosure was found to be associated with improved treatment adherence and quality of life irrespective of other factors. Despite the available guideline, how disclosure takes place may vary from culture to culture and from place to place, depending on available resources and caregivers’ desires and concerns. There is therefore a need for adapting the guideline to address important local cultural values relevant in sharing and handling sensitive information that involves the lives of children.
Acquired Immune Deficiency Syndrome
Adjusted odds ratio
Antiretroviral treatment
Antiretroviral
Care and treatment centre
Global health sector strategy
Highly active antiretroviral therapy
Human immunodeficiency virus
HIV testing and counselling
Health-related quality of life
Mother to child transmission
National Bureau of Standards
National AIDS Control Programme
Opportunistic infections
Odds ratio
Pneumocystis carinii pneumonia
Prevention of mother to child transmission of HIV
Quality of life
Standard deviation
Statistical package for the social sciences
Simple random sampling
Tuberculosis
Tanzania Health Management Information System
United Nations Programme on HIV/AIDS
United States Agency for International Development
United Nations Children’s Fund
Voluntary, counselling, and testing
World Health Organization.
The datasets analyzed during the current study are available from the corresponding author on reasonable request.
Ethical clearance and approval to conduct the study were sought from the University of Dodoma Research and Ethics Committee. Permission to conduct the study in Iringa and Mbeya regions was sought from the Hospital Directors and District Medical Officers.
Consent to participate in the study was sought from the parent/guardian of the child before asking for assent from the child. Participants were informed clearly on the aim, risks, and benefits of the study. Caregivers were interviewed in the absence of their children to minimize chances of exposing the child to some of the questions they were not prepared to answer. To ensure confidentiality, the information collected was kept anonymous by not including the names of the participants and their guardians as well as the names of the treatment centres. Health education and counselling were provided to all guardians and participants approached to participate in this study at the end of each interview/contact.
The authors declare that they have no conflicts of interest nor financial relationship relevant to this manuscript.
Regina Edward Bulali originated the research question and conceptualization of the study, review of research instrument, data collection, and analysis as well as writing of the manuscript as part of her M.S. Pediatric Nursing studies at the University of Dodoma. Stephen Matthew Kibusi and Bonaventura C. T. Mpondo as the supervisors contributed in the conceptualization, development, and design of methodology, data curation, formal analysis, and overall oversight and leadership responsibility for the research activity planning and execution of the study. All authors read and approved the final manuscript.
The authors are grateful for the assistance provided by the healthcare workers in Pediatric HIV/AIDS Treatment Centres involved in this study. Special thanks are due to the guardians and the participants for their time and readiness to participate in this study.