In the resource-limited settings where most HIV-infected children live, neither the most effective strategies to inform children of their HIV status, nor the impact of disclosure is well understood. This team's long-term goal is to provide evidence to improve the chronic disease management of HIV-infected children in resource-limited settings. The purpose of this study is to assess the effect of a patient-centered intervention guiding disclosure to HIV-infected Kenyan children, using a cluster randomized trial comparing the intervention to routine care. The primary endpoint will be probability of disclosure among children, with secondary endpoints of adherence, clinical outcomes, psychological distress and social outcomes. This work will be done within a long-standing US-Kenya partnership, the Academic Model Providing Access to Healthcare (AMPATH), which currently cares for almost 120,000 adult and pediatric HIV-infected patients in 25 clinics in Kenya. We will utilize the excellent infrastructure of this academic partnership to provide the first comprehensive assessment of the physical, psychological, and social impact of disclosure for HIV-infected children in East Africa. We will evaluate the impact of an intensive disclosure intervention by pursuing these specific aims:
Aim 1 : Expand and modify an existing pediatric HIV disclosure intervention used in Kenya to include patient-centered components;
Aim 2 : Perform a cluster randomized trial to compare the impact of clinic implementation of the culturally adapted, pediatric disclosure intervention on the prevalence of disclosure and on the medical, psychological, and social outcomes for HIV-infected Kenyan children ages 10-15 years compared to children exposed to standard clinical care. The usual care control arm will have disclosure training for all clinicians, disclosure chart materials, and an existing protocol to implement disclosure for patients over 10 years. The disclosure intervention will consist of patient-centered materials to guide disclosure, including videotaped narratives; disclosure counselors;post-disclosure child support groups;and the usual care resources. Phase One, which will last 6 months, focuses on cultural adaptation of the intervention materials through intensive patient participation, including focus groups and cognitive interviewing;selecting narrative components;and training dedicated disclosure counselors. Phase Two consists of a cluster randomized, controlled trial conducted in eight pediatric HIV clinics with comprehensive patient assessments every 6 months for 2 years. We hypothesize that the intervention group will have higher rates of disclosure at a given age, as well as improved ART adherence, fewer depression symptoms and emotional difficulties, and no increases in experienced stigma compared to the control group.

Public Health Relevance

The contribution of this study is expected to be a culturally appropriate, patient-oriented intervention to advance pediatric HIV disclosure within a resource-limited setting. The proposed research is significant because we must engage in disclosure to children that optimizes the long-term clinical management for HIV-infected children, preventing viral resistance and poor physical, emotional, or social outcomes.

Agency
National Institute of Health (NIH)
Institute
National Institute of Mental Health (NIMH)
Type
Research Project (R01)
Project #
1R01MH099747-01
Application #
8389411
Study Section
Special Emphasis Panel (ZHD1-DSR-M (52))
Program Officer
Kamath, Susannah M Allison
Project Start
2012-08-09
Project End
2016-05-31
Budget Start
2012-08-09
Budget End
2013-05-31
Support Year
1
Fiscal Year
2012
Total Cost
$499,134
Indirect Cost
$110,195
Name
Indiana University-Purdue University at Indianapolis
Department
Pediatrics
Type
Schools of Medicine
DUNS #
603007902
City
Indianapolis
State
IN
Country
United States
Zip Code
46202
Vreeman, Rachel C; McCoy, Brittany M; Lee, Sonia (2017) Mental health challenges among adolescents living with HIV. J Int AIDS Soc 20:21497
McHenry, Megan Song; Nyandiko, Winstone M; Scanlon, Michael L et al. (2017) HIV Stigma: Perspectives from Kenyan Child Caregivers and Adolescents Living with HIV. J Int Assoc Provid AIDS Care 16:215-225
McAteer, Carole Ian; Truong, Nhan-Ai Thi; Aluoch, Josephine et al. (2016) A systematic review of measures of HIV/AIDS stigma in paediatric HIV-infected and HIV-affected populations. J Int AIDS Soc 19:21204
Vreeman, Rachel C; Scanlon, Michael L; Inui, Thomas S et al. (2015) 'Why did you not tell me?': perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya. AIDS 29 Suppl 1:S47-55
Vreeman, Rachel C; Scanlon, Michael L; Marete, Irene et al. (2015) Characteristics of HIV-infected adolescents enrolled in a disclosure intervention trial in western Kenya. AIDS Care 27 Suppl 1:6-17
Inui, Thomas S (2015) The charismatic journey of mastery learning. Acad Med 90:1442-4
Vreeman, Rachel C; Scanlon, Michael L; McHenry, Megan S et al. (2015) The physical and psychological effects of HIV infection and its treatment on perinatally HIV-infected children. J Int AIDS Soc 18:20258
Vreeman, Rachel C; Scanlon, Michael L; Mwangi, Ann et al. (2014) A cross-sectional study of disclosure of HIV status to children and adolescents in western Kenya. PLoS One 9:e86616
Vreeman, Rachel C; Gramelspacher, Anna Maria; Gisore, Peter O et al. (2013) Disclosure of HIV status to children in resource-limited settings: a systematic review. J Int AIDS Soc 16:18466
Vreeman, Rachel C; Nyandiko, Winstone M; Ayaya, Samwel O et al. (2010) The perceived impact of disclosure of pediatric HIV status on pediatric antiretroviral therapy adherence, child well-being, and social relationships in a resource-limited setting. AIDS Patient Care STDS 24:639-49