Knowledge of one’s own HIV
status is essential for long-term disease management, but there are few data on
how disclosure of HIV status to infected children and adolescents in
sub-Saharan Africa is associated with clinical and psychosocial health
outcomes.
We conducted a detailed baseline assessment of the disclosure status, medication adherence, HIV stigma, depression, emotional and behavioral difficulties, and quality of life among a cohort of Kenyan children enrolled in an intervention study to promote disclosure of HIV status. Among 285 caregiver–child dyads enrolled in the study, children’s mean age was 12.3 years. Caregivers were more likely to report that the child knew his/her diagnosis (41%) compared to self-reported disclosure by children (31%). Caregivers of disclosed children reported significantly more positive views about disclosure compared to caregivers of non-disclosed children, who expressed fears of disclosure related to the child being too young to understand (75%), potential psychological trauma for the child (64%), and stigma and discrimination if the child told others (56%).
Overall, the vast majority of children scored within normal ranges on screenings for behavioral and emotional difficulties, depression, and quality of life, and did not differ by whether or not the child knew his/her HIV status. A number of factors were associated with a child’s knowledge of his/her HIV diagnosis in multivariate regression, including older age (OR 1.8, 95% CI 1.5–2.1), better WHO disease stage (OR 2.5, 95% CI 1.4–4.4), and fewer reported caregiver-level adherence barriers (OR 1.9, 95% CI 1.1–3.4).
While a minority of children in this cohort knew their HIV status and caregivers reported significant barriers to disclosure including fears about negative emotional impacts, we found that disclosure was not associated with worse psychosocial outcomes.
...We found just over 40% of 10 to 14-year-olds knew their HIV status by caregiver report, which is similar to a previous study in this setting (Vreeman, Scanlon, et al., 2014) and similar to estimates from other LMIC (Vreeman et al., 2013). Given that more than half of children over 10 still do not know their status, the current disclosure protocol in place at AMPATH has clearly not been effectively implemented. There are likely several health systems factors that contribute to the ineffectiveness of the current disclosure protocol, including busy caseloads for clinicians that do not allow for enough time to assess disclosure readiness and conduct disclosure counseling in routine care and inadequate training and tools to use for disclosure counseling. Lack of caregiver readiness and fears about negative child-level (e.g., psychological distress) and family-level (e.g., stigma and discrimination) consequences of disclosure certainly contribute to a reluctance to disclose, as this and previous work among Kenyan caregivers suggest (Vreeman et al., 2010). While there were no differences in reported missed doses, disclosed children reported significantly fewer caregiver-level adherence barriers. While we cannot assess the relationship between disclosure and adherence given the cross-sectional nature of this study, the role that disclosure plays in reducing adherence barriers at the child and caregiver level has been supported by previous qualitative work in this setting (Vreeman et al., 2009,2010) and others (Bikaako-Kajura et al., 2006). Using the longitudinal data we are collecting on disclosure status and adherence to HAART over two years of follow-up with this cohort, we will be able to provide more data to investigate the relationship between disclosure and adherence in the future.
We conducted a detailed baseline assessment of the disclosure status, medication adherence, HIV stigma, depression, emotional and behavioral difficulties, and quality of life among a cohort of Kenyan children enrolled in an intervention study to promote disclosure of HIV status. Among 285 caregiver–child dyads enrolled in the study, children’s mean age was 12.3 years. Caregivers were more likely to report that the child knew his/her diagnosis (41%) compared to self-reported disclosure by children (31%). Caregivers of disclosed children reported significantly more positive views about disclosure compared to caregivers of non-disclosed children, who expressed fears of disclosure related to the child being too young to understand (75%), potential psychological trauma for the child (64%), and stigma and discrimination if the child told others (56%).
Overall, the vast majority of children scored within normal ranges on screenings for behavioral and emotional difficulties, depression, and quality of life, and did not differ by whether or not the child knew his/her HIV status. A number of factors were associated with a child’s knowledge of his/her HIV diagnosis in multivariate regression, including older age (OR 1.8, 95% CI 1.5–2.1), better WHO disease stage (OR 2.5, 95% CI 1.4–4.4), and fewer reported caregiver-level adherence barriers (OR 1.9, 95% CI 1.1–3.4).
While a minority of children in this cohort knew their HIV status and caregivers reported significant barriers to disclosure including fears about negative emotional impacts, we found that disclosure was not associated with worse psychosocial outcomes.
...We found just over 40% of 10 to 14-year-olds knew their HIV status by caregiver report, which is similar to a previous study in this setting (Vreeman, Scanlon, et al., 2014) and similar to estimates from other LMIC (Vreeman et al., 2013). Given that more than half of children over 10 still do not know their status, the current disclosure protocol in place at AMPATH has clearly not been effectively implemented. There are likely several health systems factors that contribute to the ineffectiveness of the current disclosure protocol, including busy caseloads for clinicians that do not allow for enough time to assess disclosure readiness and conduct disclosure counseling in routine care and inadequate training and tools to use for disclosure counseling. Lack of caregiver readiness and fears about negative child-level (e.g., psychological distress) and family-level (e.g., stigma and discrimination) consequences of disclosure certainly contribute to a reluctance to disclose, as this and previous work among Kenyan caregivers suggest (Vreeman et al., 2010). While there were no differences in reported missed doses, disclosed children reported significantly fewer caregiver-level adherence barriers. While we cannot assess the relationship between disclosure and adherence given the cross-sectional nature of this study, the role that disclosure plays in reducing adherence barriers at the child and caregiver level has been supported by previous qualitative work in this setting (Vreeman et al., 2009,2010) and others (Bikaako-Kajura et al., 2006). Using the longitudinal data we are collecting on disclosure status and adherence to HAART over two years of follow-up with this cohort, we will be able to provide more data to investigate the relationship between disclosure and adherence in the future.
Overall, children in this cohort demonstrated few
psychosocial health problems and scored in the normal ranges of screenings for
psychological functioning, behavioral and emotional difficulties, and
depression symptoms, and did not differ by disclosure status...
Full article at: http://goo.gl/jrIo50
By:
aDepartment of Pediatrics, Children’s
Health Services Research, Indiana University School of Medicine, Indianapolis,
IN, USA
bAcademic Model Providing Access to
Healthcare (AMPATH), Eldoret, Kenya
cDepartment of Child Health and Paediatrics, School
of Medicine, College of Health Sciences, Moi University, Eldoret, Kenya
dDepartment of Behavioral Sciences, School
of Medicine, College of Health Sciences, Moi University, Eldoret, Kenya
eDepartment of Medicine, Indiana
University School of Medicine, Indianapolis, IN, USA
* Corresponding author. Email: ude.ui@nameervr
Published online 2015 Nov 29. doi: 10.1080/09540121.2015.1026307
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