A qualitative assessment of barriers to antiretroviral therapy adherence among adolescents in western Kenya.

Antiretroviral therapy (ART) requires nearly perfect adherence to be effective. This study aims to identify key factors identified by HIV-infected adolescents on ART as contributing to medication adherence in western Kenya. Using a qualitative study design, three adolescent focus groups discussions were conducted at an urban and rural clinic site in western Kenya. The study population included HIV-infected adolescents receiving ART through the USAID-AMPATH HIV care system. A trained facilitator conducted groups in Kiswahili using a semi-structured interview guide probing multiple aspects of experience of taking medicines. Transcribed focus group dialogues were analyzed using constant comparison, progressive coding, and triangulation. The adolescents described a context of negative societal beliefs about HIV, necessitating a lifestyle of secrecy and minimizing the information shared about HIV or ART. Assessing and addressing adolescents' fears and behaviors regarding medication secrecy and disclosure may enable more accurate monitoring of adherence and development of intervention strategies.

Long-term impact of the Kenya postelection crisis on clinic attendance and medication adherence for HIV-infected children in western Kenya.

BACKGROUND: Kenya experienced a political and humanitarian crisis after presidential elections on December 27, 2007. We sought to describe both the immediate and long-term impact of this conflict for HIV-infected children in western Kenya. METHODS: We conducted a retrospective study of a cohort of these children for 3 periods: period 1, before the election (October 26, 2007, to December 25, 2007); period 2, immediately after the election (December 26, 2007, to April 15, 2008); and period 3, long-term postelection (April 16, 2008, to December 31, 2008). Two outcome variables of loss-to-follow-up (LTFU) were assessed: initial LTFU and complete LTFU. We assessed clinic adherence by evaluating the difference between actual visits and expected visits. Among children on antiretroviral therapy (ART), we assessed overall medication adherence and changes in medication adherence. RESULTS: Two thousand five hundred forty-nine HIV-infected children <14 years were seen in period 1. Children on ART had less initial LTFU (3.0% compared with 5.1%, P < 0.01) and less complete LTFU (2.6% compared with 6.8%, P < 0.001) than children not on ART. For children not on ART, clinic adherence improved in period 3 compared with period 2. For children on ART with a more strict measure of clinic adherence, clinic adherence declined over time. Orphans had better clinic adherence than nonorphans. Among children on ART, there were few demographic differences when comparing medication adherence between time. CONCLUSIONS: HIV-infected children are at risk for disruptions in clinic follow-up and medication adherence after a humanitarian crisis. Individual and contextual factors moderate the effects of these disruptions.

"Wamepotea" (they have become lost): outcomes of HIV-positive and HIV-exposed children lost to follow-up from a large HIV treatment program in western Kenya.

OBJECTIVE: The objective of this study was to identify the vital status and reasons for children becoming loss to follow-up (LTFU) from a large program in western Kenya. METHODS: This was a prospective evaluation of a random sample of 30% of HIV-exposed and HIV-positive children LTFU from either an urban or rural HIV Academic Model Providing Access to Healthcare clinic. LTFU is defined as absence from clinic for >6 months if on combination antiretroviral therapy and > 12 months if not. Experienced community health workers were engaged to locate them. RESULTS: There were 97 children sampled (78 urban, 19 rural). Of these, 82% were located (78% urban, 100% rural). Among the HIV positive, 16% of the children were deceased, and 16% had not returned to clinic because of disclosure issues/discrimination in the family or community. Among the HIV exposed, 30% never returned to care because their guardians either had not disclosed their own HIV status or were afraid of family/community stigma related to their HIV status or that of the child. Among children whose HIV status was unknown, 29% of those found had actually died, and disclosure/discrimination accounted for 14% of the reasons for becoming LTFU. Other reasons included believing the child was healed by faith or through the use of traditional medicine (7%), transport costs (6%), and transferring care to other programs or clinics (8%). CONCLUSION: After locating >80% of the children in our sample, we identified that mortality and disclosure issues including fear of family or community discrimination were the most important reasons why these children became LTFU.

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.

In resource-limited settings, beliefs about disclosing a child's HIV status and the subsequent impacts of disclosure have not been well studied. We sought to describe how parents and guardians of HIV-infected children view the impact of disclosing a child's HIV status, particularly for children's antiretroviral therapy (ART) adherence. A qualitative study was conducted using involving focus groups and interviews with parents and guardians of HIV-infected children receiving ART in western Kenya. Interviews covered multiple aspects of the experience of having children take medicines. Transcribed interview dialogues were coded for analysis. Data were collected from 120 parents and guardians caring for children 0­14 years (mean 6.8 years, standard deviation [SD] 6.4); 118 of 120 had not told the children they had HIV. Children's caregivers (parents and guardians) described their views on disclosure to children and to others, including how this information-sharing impacted pediatric ART adherence, children's well-being, and their social relationships. Caregivers believed that disclosure might have benefits such as improved ART adherence, especially for older children, and better engagement of a helping social network. They also feared, however, that disclosure might have both negative psychological effects for children and negative social effects for their families, including discrimination. In western Kenya, caregivers' views on the risks and benefits to disclosing children's HIV status emerged a key theme related to a family's experience with HIV medications, even for families who had not disclosed the child's status. Assessing caregivers' views of disclosure is important to understanding and monitoring pediatric ART.

Acceptance of HIV testing for children ages 18 months to 13 years identified through voluntary, home-based HIV counseling and testing in western Kenya.

BACKGROUND: Home-based voluntary counseling and testing (HCT) presents a novel approach to early diagnosis. We sought to describe uptake of pediatric HIV testing, associated factors, and HIV prevalence among children offered HCT in Kenya. METHODS: The USAID-Academic Model Providing Access to Healthcare Partnership conducted HCT in western Kenya in 2008. Children 18 months to 13 years were offered HCT if their mother was known to be dead, her living status was unknown, mother was HIV infected, or of unknown HIV status. This retrospective analysis describes the cohort of children encountered and tested. RESULTS: HCT was offered to 2289 children and accepted for 1294 (57%). Children were more likely to be tested if more information was available about a suspected or confirmed maternal HIV infection [for HIV-infected living mothers odds ratio (OR) = 3.20, 95% confidence interval (CI): 1.64 to 6.23), if parents were not in household (OR = 1.50, 95% CI: 1.40 to 1.63), if they were grandchildren of head of household (OR = 4.02, 95% CI: 3.06 to 5.28), or if their father was not in household (OR = 1.41, 95% CI: 1.24 to 1.56). Of the eligible children tested, 60 (4.6%) were HIV infected. CONCLUSIONS: HCT provides an opportunity to identify HIV among high-risk children; however, acceptance of HCT for children was limited. Further investigation is needed to identify and overcome barriers to testing uptake.

Retention of HIV-infected and HIV-exposed children in a comprehensive HIV clinical care programme in Western Kenya.

BACKGROUND: To describe incidence rates (IR) and risk factors for loss-to-follow-up (LTFU) among HIV-infected and HIV-exposed children in a large HIV treatment programme in Western Kenya. METHODS: The USAID-AMPATH Partnership has enrolled >100,000 patients (20% children) at 23 clinic sites throughout western Kenya. LTFU is defined as being absent from the clinic for >3 months if on combination antiretroviral treatment (cART) and >6 months if not. Included in this analysis were children aged <14 years, HIV exposed or infected at enrollment, and enrolled between April 2002 and March 2009. The IR for LTFU are presented per 100 child-years (CY) of follow-up. Proportional hazards models with time-independent and time-dependent covariates were used to model factors associated with LTFU. Weight for height Z-scores were calculated using EpiInfo, with severe malnutrition being defined as a Z-score

Factors sustaining pediatric adherence to antiretroviral therapy in western Kenya.

Antiretroviral therapy (ART) requires nearly perfect adherence to be effective. Although 90% of HIV-infected children live in Africa, there are limited data on pediatric adherence from this multicultural continent.We conducted a qualitative study to identify key factors contributing to pediatric ART adherence. Ten focus group discussions (N = 85) and 35 individual interviews were conducted with parents and guardians of HIV-infected children receiving ART in western Kenya. Interviews covered multiple aspects of the experience of having children take ART and factors that inhibited or facilitated medication adherence. Constant comparison, progressive coding, and triangulation methods were used to arrive at a culturally contextualized, conceptual model for pediatric ART adherence derived from the descriptions of the lived experience in this resource-limited setting. Child care, including sustained ART adherence, depends on interacting cultural and environmental determinants at the levels of the individual child, parent/caregiver, household, community, health care system, and society.

The clinical burden of tuberculosis among human immunodeficiency virus-infected children in Western Kenya and the impact of combination antiretroviral treatment.

CONTEXT: The burden of tuberculosis (TB) disease in children, particularly in HIV-infected children, is poorly described because of a lack of effective diagnostic tests and the emphasis of public health programs on transmissible TB. OBJECTIVES: The objectives of this study were to describe the observed incidence of and risk factors for TB diagnosis among HIV-infected children enrolled in a large network of HIV clinics in western Kenya. DESIGN: Retrospective observational study. SETTING: The USAID-Academic Model Providing Access to Healthcare (AMPATH) Partnership is Kenya's largest HIV/AIDS care system. Since 2001, the program has enrolled over 70,000 HIV-infected patients in 18 clinics throughout Western Kenya. PATIENTS: This analysis included all HIV-infected children aged 0 to 13 years attending an AMPATH clinic. MAIN OUTCOME MEASURE: The primary outcome was a diagnosis of any TB, defined either by a recorded diagnosis or by the initiation of anti-TB treatment. Diagnosis of TB is based on a modified Kenneth Jones scoring system and is consistent with WHO case definitions. RESULTS: There were 6535 HIV-infected children aged 0 to 13 years, eligible for analysis, 50.1% were female. Of these, 234 (3.6%) were diagnosed with TB at enrollment. There were subsequently 765 new TB diagnoses in 4368.0 child-years of follow-up for an incidence rate of 17.5 diagnoses (16.3-18.8) per 100 child-years. The majority of these occurred in the first 6 months after enrollment (IR: 106.8 per 100 CY, 98.4-115.8). In multivariable analysis, being severely immune-suppressed at enrollment (Adjusted Hazard Ratio [AHR]: 4.44, 95% CI: 3.62-5.44), having ever attended school AHR: 2.65, 95% CI: 2.15-3.25), being an orphan (AHR: 1.57, 95% CI: 1.28-1.92), being severely low weight-for-height at enrollment (AHR: 1.46, 95% CI: 1.32-1.62), and attending an urban clinic (AHR: 1.39, 95% CI: 1.16-1.67) were all independent risk factors for having an incident TB diagnosis. Children receiving combination antiretroviral treatment were dramatically less likely to be diagnosed with incident TB (AHR: 0.15, 95% CI: 0.12-0.20). CONCLUSIONS: These data suggest a high rate of TB diagnosis among HIV-infected children, with severe immune suppression, school attendance, orphan status, very low weight-for-height, and attending an urban clinic being key risk factors. The use of combination antiretroviral treatment reduced the probability of an HIV-infected child being diagnosed with incident TB by 85%.

Association of antiretroviral and clinic adherence with orphan status among HIV-infected children in Western Kenya.

BACKGROUND: Pediatric adherence to antiretroviral therapy (ART) is not well studied in resource-limited settings. Reported ART adherence may be influenced by contextual factors, such as orphan status. OBJECTIVES: The objectives of this study were to describe self- and proxy-reported pediatric ART adherence in a resource-limited population and to investigate associated contextual factors. PATIENTS AND METHODS: This was a retrospective study involving pediatric, HIV-infected patients in Western Kenya. We included patients aged 0-14 years, who were on ART and had at least 1 adherence measurement (N = 1516). We performed logistic regression to assess the association between orphan status and odds of imperfect adherence, adjusting for sex, age, clinic site, number of adherence measures, and ART duration, stratified by age and ART duration. RESULTS: Of the 1516 children, only 33% had both parents living when they started ART. Twenty-one percent had only father dead, 28% had only mother dead, and 18% had both parents dead. Twenty-nine percent reported imperfect ART adherence. The odds of ART nonadherence increase for children with both parents dead. Fifty-seven percent of children had imperfect clinic adherence. There was no significant association between orphan status and imperfect clinic adherence. CONCLUSIONS: The majority of pediatric patients in this resource-limited setting maintained perfect ART adherence, though only half kept all scheduled clinic appointments. Understanding contextual factors, such as orphan status, will strengthen adherence interventions.