Appendix

  1. Questions for Focus Groups (pages 2-3)
  2. Codebook for Major Focus Group Themes (page 4)
  3. Tables
  4. Table 1 (Page 5)
  5. Table 2 (Pages 6-7)
  1. Questions for Focus Groups

Focus groups for caregivers: first 5 questions were the same for caregivers of children who know and children who do not know.

Would you share with us how you found out about your child was infected with the virus?

Tell us what it was like for you to find out your child had the virus?

What has your life been like since you learned that your child has the virus?

Tell us about your experience when someone finds out that your child has the virus?

What questions does your child ask about his/her illness? What do you tell him/her?

Specific questions for caregivers of children who already know their HIV status:

How old was the child? How did the event(s) of the disclosure occur?

What made you decide to give permission to reveal the diagnosis to the child? Who disclosed the diagnosis to the child?

If it was you, who (if anyone) helped you to disclose the diagnosis to the child?

What was the child’s reaction?

Compared to that moment, how do you think he/she is doing now?

Before the child found out, what benefits did you think telling your child about his/her condition might have? What benefits have you found of telling your child about his/her condition, now that he/she knows?

Before the child found out, what disadvantages did you think telling your child about his/her condition might have? What disadvantages have you found of telling your child about his/her condition, now that he/she knows?

What would you do differently about the disclosure process?

What are the recommendations you would give to improve the whole process of disclosing to a child he/she has HIV?

Specific questions for caregivers of children who DO NOT know their HIV status

We would like to explore the reasons you have for not telling your child about his/her condition.

When do you think your child should find out he/she has the virus?

Who do you expect will tell him/her?

Would you share how do you think the process of disclosure should be?

In your opinion, who are the best people to tell children that they have the virus?

When is the best time (age) to tell the child about this condition?

What would make it easier to talk about HIV/AIDS?

What disadvantages do you think there might be in telling your child about his/her condition?

What bad things might happen if he/she finds out about his/her condition?

What benefits do you think there might be in telling your child about his/her condition?

What good things might happen if he/she finds out about his/her condition?

Focus group questions for adolescents who already know their HIV status

Would you share with us how you found out you have HIV infection (“the virus”)?

Tell us what it was like for you to find out you had the virus?

What has your life been like since you learned that you have the virus? Tell us about your experience when someone finds out that you have the virus? At what age do you think it is best for children to find out that they have the virus?

In your opinion, who are the best people to tell children that they have the virus?

How would you recommend that family members tell children who do not yet know about their condition that they have the virus?

How would you recommend that healthcare professionals, like doctors or psychologists, tell children and adolescents who do not yet know their status that they have the virus?

What about support groups and camps for children and adolescents who have the virus?

What role do they play in helping children and adolescents find out they have the virus?

Last 4 questions were the same for all groups:

Would you share with us what your biggest concerns are now about the virus?

Would you share with us your plans for the future?

How do you think your life will be in the next 5 years?

What other thoughts do you have that might help us in finding better ways to let children and adolescents know that they have the virus?

  1. Codebook of Major Themes, focus groups of HIV-infected adolescents who knew their status, caregivers of youth who knew their status and caregivers of youth who did not know their status, Dominican Republic

Adherence / Any reference to the child’s adherence or non-adherence to medication; and what caregivers do about non-adherence.
Disclosure / Any reference about the disclosure process including the advantages/disadvantages, reasons for disclosing or not disclosing, and any recommendations about how to disclose.
Emotions / Any mention of affect, feelings, or emotional reactions to learning about their status.
Future Plans / Any reference to the child’s future plans.
Outlook / Any reference to the child’s outlook in life, attitude regarding their status, and how they feel about themselves.
Reactions / Any reference to how the child, caregiver, and/or family reacted to knowing the child’s status.
Social Stigma / Any reference to experiencing or fearing social stigma due to status.
Support / Any reference to any type of support including family, religious, and the summer camps and other services provided.
Worries / Any reference to worrying or concerns about the child’s status.

Table 1: Numbers (and proportions) of patients who knew their HIV infection status, by selected characteristics: Robert Reid Cabral Children’s Hospital (CCH) and Clínica de Familia La Romana (CDF) (N=327).

Characteristics / Number (%) / Total / Prevalence Ratio
Age Group / who know their / (95%CI)
status
13 years / 58 (49.6) / 117 / 6.4
<13 years / 16 (7.7) / 208 / (3.9-10.7)
Non-clinical activities for HIV-infected children
Ever participated / 47 (46.1) / 102 / 3.8
Never participated / 27 (12.1) / 223 / (2.5-5.7)
Support Group
Ever participated / 13 (100) / 13 / 5.1
Never participated / 61 (19.6) / 312 / (4.0-6.4)
Camp
Ever participated / 27 (33.3) / 81 / 1.7
Never participated / 47 (19.3) / 244 / (1.2-2.6)
Center
CDF / 30 (30.3) / 99 / 1.6
RRCH / 44 (19.5) / 226 / (1.04-2.3)

p

<.001

<.001

<.001

.009

.03

*95% CI: 95% Confidence Interval

Table 2. Numbers (and proportions) of patients who knew their HIV infection status, by participation in any non-clinical activities, camp, and support groups, stratified by age-group, Robert Reid Cabral Children’s Hospital (CCH) and Clínica de Familia La Romana (CDF), (N=327)

Characteristic / Number (%) / Total / Prevalence Ratio / p
who knew their / (95%CI)*
Status
  1. Any Activity

Age 13 years
Ever Participated / 35 (81.8) / 44 / 2.7 / <.001
Never Participated / 22 (31.1) / 73 / (1.9-4.0)
Age <13 years
Ever Participated / 11 (19.0) / 58 / 5.7 / <.001
Never Participated / 5 (3.3) / 150 / (2.1-15.7)
Difference by strata / 0.18†
  1. Camp

Age 13 years
Ever Participated / 21 (72.4) / 29 / 1.7 / .005
Never Participated / 37 (42.0) / 88 / (1.2, 2.4)
Age < 13 years
Ever Participated / 6 (11.5) / 52 / 1.8 / .36
Never Participated / 10 (6.4) / 156 / (0.7, 4.7)
Difference by strata / 0.93†
  1. Support Group

Age 13 years
Ever Participated / 10 (100) / 10 / 2.3 / <.001
Never Participated / 48 (44.9) / 107 / (1.8, 2.7)
Table 2, cont.
Age < 13 years
Ever Participated / 3 (100) / 3 / 15.7 / <.001
Never Participated / 13 (6.3) / 205 / (9.3, 26.7)

Difference by strata <0.001†

*CI=Confidence interval

†p-value for Breslow-Day Chi square test for interaction (difference in strength of associations across strata)

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