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| Instrument used | Description | Questions or categories (examples) | Remarks | Reference |
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| Sociodemographic variables |
| Structured sociodemographic questionnaire; study site, age, gender, ethnicity, educational level attained, socioeconomic status (SEI), and religion | Socioeconomic index (SEI) was constructed from commonly available household items in typical Ugandan households and has previously been used by this (Kinyanda et al., 2011c) | To assess SEI, e.g., does your household have electricity?
Response:
Yes/no | Administered to caregiver
Has previously
been used by this study group | Kinyanda et al., 2011a; 2012a |
|
| Caregiver variables |
| Caregivers’ sociodemographics; age, gender, highest level of education, marital status, and caregiver HIV status | Questions that gathered information about caregivers’ sociodemographics | To assess for caregivers’ highest level of education, e.g.,
What is the highest level of education attained by caregiver?
Response:
1 = no formal education
2 = primary level
3 = secondary level
4 = university level
5 = other tertiary level | Administered to caregiver
Has previously been used by this study group | Kinyanda et al., 2011a; 2012a |
| To assess caregivers’ psychological distress | WHO Self-Report Questionnaire; WHO SRQ-20 | 20-item questionnaire that assesses general psychological distress | Has items such as: Do you often have headaches?
Response:
Yes/no | Administered to caregiver
A total score on the SRQ 20 is then calculated for each patient, with a clinically significant cutoff of ≥6 | (WHO SRQ 20; WHO, 1994)
Was culturally validated and used in Uganda by Nakimuli-Mpungu et al., 2012 |
|
| Childhood’s psychosocial environment factors |
| Felt HIV stigma | Brief HIV stigma scale (B-HSS) | 9-item questions on experiences,
feelings, and
opinions on HIV stigma; five items were used | Has items such: I have been discriminated against at school/work because of being HIV positive
Response:
Yes/no | Administered to adolescents
This 9-item scale is a psychometrically valid and reliable instrument that has both clinical and research applications | Berger et al., 2001
Mavie, 2014 |
| Child-caregiver relationship | The caregiver-child interaction scale (CCIS) was used to assess for the child-caregiver relationship | The caregiver-child interaction is a 10-item, self-administered, communication scale. It was adapted from the child’s report of parental behavior inventory | The items were scored as follows; 1 = never, 2 = rarely, 3 = sometimes, 4 = often, and 5 = always | In this study, four questions were used
This was administered to caregivers | Margolis and Weintraub, 1977 |
| Trauma | The childhood trauma questionnaire-short form (CTQ-SF) | 28-item questionnaire on traumatic events | Selected examples:
Have you ever been beaten, hit, and slapped?
Response:
1 = yes
2 = no | Two items were used in this study
This was administered to adolescents
Employed for the second time in Uganda by Kinyanda et al., 2016 | Bernstein and Fink, 1998 |
| Food security | One-item question | Closed question | The item was: In the last month, did you or your family have enough food?
Response:
Yes/no | This was administered to caregivers
It was previously used in the HIV situation of Uganda by Kinyanda et al., 2011 | Kinyanda et al.,2011a;2012a |
Negative life
Events | The modified European Parasuicide Interview Schedule | 27-item questions on adverse life events experienced in the last one year with related to parents, sibling, children, and self; three items were used in this study | The two questions asked were:
(i) Did your parents separate?
(ii) In the last year, was either of your parents seriously ill? e.g., got admitted
Responses:
Yes/no | This was administered to adolescents
Two questions on adverse life events experienced in the last one year
This tool has previously adapted to the Ugandan sociocultural context and used in HIV research | Kerkhof et al., 1989; Kinyanda et al., 2005 |
|
| Child illness variables |
| WHO clinical stage for HIV/AIDS | WHO clinical staging criteria | | Respondents classified as Stages I to IV based on the presence/absence a combination of 17 HIV associated clinical symptoms | This was administered to adolescents | [22] |
| CD4 counts | CD4 count taken in the last 6 months | | Cells/μl of blood | | |
| Viral load | Viral load determined at assessment | | Copies/ml | | |
|
| Dependent variables |
| Anxiety and depressive disorders | DSM-5-referenced, behavior rating scale and the Child and Adolescent Symptom Inventory-5 (CASI-5) | Anxiety and depressive disorders presentations considered, CA-HIV was regarded as having anxiety disorder and depression if he/she reached the cutoff for both anxiety disorders and depression, while a CA-HIV was regarded as having an anxiety disorder if they reached the cutoff for anxiety disorders; CA-HIV was regarded as having depression if they reached the cutoff for depression | CA-HIV was considered to have the disorder if the number of symptoms in the category for the disorder (anxiety or depression) which the caregiver rated as occurring “often” or “very often” reached a predetermined cutoff
Selected example:
Is extremely tense or unable to relax
Responses;
0 = never
1 = sometimes
2 = often
3 = very often | Six items of the category D of the CASI-5 were used to assess for “anxiety disorder” presentations | [15] |
|
| Negative clinical and behavioral outcomes |
| Academic performance | This section assessed the academic performance of the CA-HIV at school | Since academic performance in the Uganda education system is measured differently at the primary and secondary levels, we used 3 questions to develop a composite measure of poor academic performance. The 3 questions were:
What was the academic performance of this child last term/semester?
Response:
1 = poor 2 = fair
3 = good
4 = excellent
What academic position did this child/adolescent hold in class last term/semester?
Response:
Out of how many pupils/students
………………. Number
What aggregate points did this child/adolescent attain last term/semester?
Aggregate points attained…………. | Poor academic performance at school which was determined as follows: In certain classes, performance is measured by a “points” aggregate, with lower aggregates denoting better performance. If the ratio of the points obtained to the best possible aggregate was greater than 12, then the CA-HIV was deemed to have performed poorly
Alternatively, if a point aggregate was not available, the CA-HIV was deemed to have performed poorly if his or her position in class was in the fourth quartile. If neither of these was available, then the performance in class was determined by the answer “poor” to the question “what was the academic performance of this child last term/semester?” | Asked of the caregiver
Was adapted and used in Uganda by Kinyanda et al.2014 | [1] |
| Experienced problems at school | This section assessed for social functioning of the CA-HIV at school | Used 3 questions to develop the composite measure of “having experienced problems at school.” The 3 questions were:
Did the child/adolescent suffer disciplinary measures (including suspension, and dismissal) in the last term/semester?
Response:
Yes/no
Did the child/adolescent stay away from school without permission in the last term/semester?
Response:
Yes/no
Number of days missed at school in the last term
Response:
Number ……… | A CA-HIV was deemed to be positive for the composite measure, “having experienced problems at school” if any of the following three conditions were met: (i) A positive answer to the question “did the CA-HIV suffer disciplinary measures (including suspension/dismissal) in the last term/semester?” (ii) A positive answer to the question “did the CA-HIV stay away from school without permission in the last term/semester?” (iii) The pupil was absent from school for 6 or more days in the last term/semester | Asked of the caregiver
Was adapted and used in Uganda by Kinyanda et al.2014 | [1] |
| Risky sexual behavior | Involvement in sexual activity | Assessed sexual debut | An example of items;
Have you ever had sex?
Response:
Yes/no | This was administered to adolescents
This has previously used by Kinyanda et al., 2011 | Employed
For the second
time in Uganda by Kinyanda et al., 2016 |
| Frequency of visits to the health unit | One item was used | Number of times visited to the health unit in the past month | Item was as follows:
How many times did you visit the health unit in the last month?
Response:
Number of visits…………… | This administered to adolescents only | Employed for the second time in Uganda by Kinyanda et al., 2016 |
| Frequency of hospital admissions | One item was used | Used question:
For how many days were you admitted to hospital in the last 6 months?
Response:
Number of days………….
To create a derived variable. | Used responses to the question: For how many days were you admitted to hospital in the last 6 months? To create a derived variable of whether or not the CA-HIV has been admitted to hospital in the last month | This administered to adolescents | Employed for the second time in Uganda by Kinyanda et al., 2016 |
Missed prophylaxis or ART
(poor adherence to HIV treatment) | Used the 3-day recall test to assess for non-adherence to HIV treatment | Used two questions to arrive at the composite measure of “being non-adherent to HIV treatment’”
The two questions were as follows:
For those on ART: How many days in the past 3 days have you missed taking ART?
Response:
……….
Number of days
For those on Septrin/Dapsone: How many days in the past 3 days have you missed taking Septrin/Dapsone?
Response:
……….
Number of days…. | A CA-HIV had to meet the following conditions to be assessed as non-adherent to HIV treatment. If the participant was on ART, then failure to adhere was defined as having missed a dose of ART in previous three days. If the participant was not yet on ART, then failure to adhere was defined as having missed a dose of cotrimoxazole (CTX) prophylaxis in the previous three days | This was administered to adolescents only | Employed for the second time in Uganda by Kinyanda et al., 2016 |
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