Barriers and facilitators to antiretroviral medication adherence among HIV-infected paediatric patients in Ethiopia: A qualitative study

Medication adherence is a complex behaviour with multiple determinants. Understanding the barriers and facilitators of adherence is invaluable for programme improvement, which assists the foundation of adherence intervention strategies. A qualitative study was conducted in six selected hospitals of Addis Ababa in 2008, to explore barriers and facilitators to antiretroviral medication adherence among HIV-infected paediatric patients. Twelve caregivers of adherent and non-adherent children and 14 key informants in five hospitals were included in the study. The findings revealed that over-dosage (heavy pill burden), fear of stigma and discrimination, cost and access to transportation, lack of understanding of the benefit of taking the medication, economic problems in the household, and lack of nutritional support were the barriers to adherence to HAART. The presence of mobile/wall alarm, the presence of follow-up counselling, improved health of the child, ART clinic setups, and disclosure of HIV serostatus were among the facilitators. This study indicated that paediatric adherence to antiretroviral therapy faces a huge challenge. It suggests the provision of income-generating schemes to caregivers for assisting HIV-infected children. Health care providers should address proper usage of medication reminders.     

Correlates of Adherence to Antiretroviral Therapy in HIV-Infected Children in Lomé, Togo, West Africa

We assessed pediatric adherence to antiretroviral therapy (ART) and examined associated factors among children in Togo, West Africa. Structured interviews of caregivers of consecutively enrolled HIV-infected children receiving ART in three HIV/AIDS care centers in Lome, Togo were conducted. Child perfect adherence reflected caregivers’ report of no antiretroviral drug doses missed neither in the past 4 days nor in the month before the interview. A total of 74 ART-treated children were included (median age 6 years). Of these, 42% of caregivers declared perfect adherence. In univariate analyses, the major factors relating to child non-adherence were: being female, living in an individual setting (vs. compound with enlarged family), receiving other ART than an NNRT-based regimen, drug regimens with six pills/spoons or more per day, caregiver other than biological parent, caregiver not declaring HIV-status, not participating to support groups and having perceived difficulty of antiretroviral (ARV) administration. In multivariate analysis, female gender, living in an individual setting, receiving other than NNRTI-based regimen and caregivers’ perceived difficulty of ARV administration remained independently associated with the reported child’s non-adherence. These data show low rates of perfect adherence to ART in children in West Africa, influenced by child and caregiver characteristics and suggest a need for counseling and education interventions as well as continuous psychological and social support.     

High prevalence of non-adherence to antiretroviral therapy among undisclosed HIV-infected children in Ghana

Adherence to antiretroviral therapy (ART) remains one of the greatest obstacles in pediatric HIV care. We sought to determine the prevalence of adherence to ART among undisclosed HIV-infected children and adolescents in Ghana. We analyzed baseline data from HIV-infected children and adolescents aged 7–18 years old enrolled in the SANKOFA Pediatric HIV disclosure intervention study in Ghana. Antiretroviral medication adherence was measured using caregiver 3-day recall; child 3-day recall; and pharmacy records for antiretroviral time-to-refill. Four hundred and twenty child-caregiver dyads were enrolled from January 2013 to June 2016. The median adherence (interquartile range), as measured by time-to-refill, was 93.2% (68.0%–100.0%). However, only 47.5% of children had ≥95% adherence (“good adherence”) using time-to-refill data. Children of caregivers who had received secondary or higher level of education versus no school (aOR, 2.90, 95% Confidence Interval, CI 1.29–6.56), p?=?0.010) or elementary education only (aOR, 2.20, CI, 1.24–3.88, p?=?0.007) were more likely to have “good adherence” (≥95%). In this cohort of children unaware of their HIV positive status, median ART adherence rate was sub-optimal (by World Health Organization definition) while 38% had poor adherence (<85%).     

Barriers to and facilitators of adherence to pediatric antiretroviral therapy in a sub-Saharan setting: insights from a qualitative study

Despite the need for HIV-positive children to adhere effectively to antiretroviral treatment (ART), a guiding theory for pediatric ART in resource-limited settings is still missing. Understanding factors that influence pediatric ART adherence is critical to developing adequate strategies. In-depth qualitative interviews were undertaken in Kinshasa, Democratic Republic of the Congo, with 20 sets of HIV disclosed and nondisclosed children along with respective caregivers to better characterize barriers, facilitators, and adherence experiences in children taking ART. Commonly cited barriers included lack of food or nutritional support, lack of assistance or supervision for children, lack of assistance for caregivers, and being unable to remember to take medicines on a consistent basis. Facilitators included having a strong caregiver-child relationship and support system along with strategies for maintaining adherence. Similar themes arose within the child-caregiver sets, but were often characterized differently between the two. Children who were aware of their HIV status displayed fewer instances of frustration and conflict concerning taking medicines and within the child-caregiver relationship. Continued study on pediatric ART adherence should account for differing perspectives of children and caregivers, as well as between status disclosed and nondisclosed children. Areas of future intervention should focus on child-caregiver relationships, disclosure of HIV status, and available nutritional and psychosocial support for children and their caregivers.     

Improved Adherence to Antiretroviral Therapy Observed Among HIV-Infected Children Whose Caregivers had Positive Beliefs in Medicine in Sub-Saharan Africa

A high level of adherence to antiretroviral treatment is essential for optimal clinical outcomes in HIV infection, but measuring adherence is difficult. We investigated whether responses to a questionnaire eliciting caregiver beliefs in medicines were associated with adherence of their child (median age 2.8 years), and whether this in turn was associated with viral suppression. We used the validated beliefs in medicine questionnaire (BMQ) to measure caregiver beliefs, and medication event monitoring system caps to measure adherence. We found significant associations between BMQ scores and adherence, and between adherence and viral suppression. Among children initiating Antiretroviral therapy (ART), we also found significant associations between BMQ ‘necessity’ scores, and BMQ ‘necessity-concerns’ scores, and later viral suppression. This suggests that the BMQ may be a valuable tool when used alongside other adherence measures, and that it remains important to keep caregivers well informed about the long-term necessity of their child’s ART.     

Disclosure of diagnosis by parents and caregivers to children infected with HIV: prevalence associated factors and perceived barriers in Addis Ababa, Ethiopia

Vertical transmission of HIV from infected mothers to children is a common phenomenon. After the introduction of highly active antiretroviral treatment (HAART), most children live longer than before. Recently, HAART has become widely available to children living in sub-Saharan African countries, and this makes disclosure of HIV status an important issue. We conducted a cross-sectional survey involving 172 parents/caregivers of HIV-infected school-age children who had follow-up at the Pediatric Infectious Disease Clinic of the Yekatit 12 Hospital, Addis Ababa. Only 16.3% of HIV-infected schoolchildren knew their diagnosis. The child's age was the main predictor of disclosure (OR: -0.25; 95% CI: -0.35, -0.09; p<0.05). The main reason for nondisclosure was fear of negative emotional consequences for the child. More than half of the parent/caregivers agreed that they need to tell the children their diagnosis, but 86% reported that they needed health care providers to help them at the event. The low rate of disclosure found in this study shows the need for awareness creation and training of health professionals, and this should be supported by appropriate guidelines to be followed by health professionals working in pediatric ART clinics. Caregivers need to be provided with the necessary knowledge and skills on how to look after children who know their HIV status.     

HIV disclosure patterns, predictors, and psychosocial correlates among HIV positive women in Zimbabwe

Disclosure of positive HIV status in Sub-Saharan Africa has been associated with safer sexual practices and better antiretroviral therapy (ART) adherence, but associations with psychosocial function are unclear. We examined patterns and psychosocial correlates of disclosure in a Zimbabwean community. Two hundred HIV positive women at different stages of initiating ART participated in a cross-sectional study examining actual disclosures, disclosure beliefs, perceived stigma, self-esteem, depression, and quality of life. Ninety-seven percent of the women disclosed to at least one person, 78% disclosed to their current husband/partner, with an average disclosure of four persons per woman. The majority (85-98%) of disclosures occurred in a positive manner and 72-95% of the individuals reacted positively. Factors significantly correlated with HIV disclosure to partners included being married, later age at menses, longer duration of HIV since diagnosis, being on ART, being more symptomatic at baseline, ever having used condoms, and greater number of partners in the last year. In multivariate analysis, being married and age at menses predicted disclosure to partners. Positive disclosure beliefs, but not the total number of disclosures, significantly correlated with lower perceived stigma (ρ = 0.44 for personalized subscale and ρ = 0.51 for public subscale, both p<0.0001), higher self-esteem (ρ = 0.15, p=0.04), and fewer depressive symptoms (ρ = -0.14, p=0.05). In conclusion, disclosure of positive HIV status among Zimbabwean women is common and is frequently met with positive reactions. Moreover, positive disclosure beliefs correlate significantly with psychosocial measures, including lower perceived stigma, higher self-esteem, and lower depression.     

The importance of caregivers in the outcome of pediatric HIV management,Mombasa, Kenya

We assessed programmatic gaps that prevent the optimal treatment of pediatric HIV infection despite free antiretroviral care in Kenya. Of 626 HIV-infected Kenyan children, the median age was five years, 54% were male and the mortality rate was 3.2 per 100 person-years. A total of 380 (61%) children initiated antiretroviral therapy (ART) during the study period. Among the 246 children who never started ART, 129 (52%) met the criteria for ART initiation. Immunologic failure occurred in 20% of children who received ART for >24 weeks. In multivariate analysis, immunological failure was associated with having nonimmediate relative or unrelated caregivers accompanying the child to clinic (AOR = 69.16, p = 0.008). Having ≥3 types of accompanying caregivers was also associated with virologic failure in multivariate analysis (AOR = 3.84, p = 0.03). The lost to follow-up rate was 8.7/100 persons-years for the entire cohort, and significantly higher (17.7/100 persons-years) among children not on ART (p < 0.001). Among children who do initiate ART, those with the best treatment outcomes were those who had a limited number of close relatives as caregivers and good adherence to ART. Focus on early ART initiation and education of the right caregiver will likely improve retention and quality of pediatric HIV care in Kenya.     

Barriers and facilitators to paediatric adherence to antiretroviral therapy in rural South Africa: a multi-stakeholder perspective

Poor adherence to antiretroviral therapy (ART) contributes to the development of drug resistance. HIV-infected children, especially those 5 years and under, are dependent on a caregiver to adhere to ART. However, characteristics of the caregiver, child, regimen, clinic and social context affect clinic attendance and medication-taking, both of which constitute adherent behaviour. We conducted nine interviews and three focus groups to determine how doctors, nurses, counsellors, traditional healers and caregivers understood the barriers and facilitators to ART adherence among children residing in rural South Africa. The data were transcribed, translated into English from isiZulu where necessary, and coded using Atlas.ti version 7. Results were interpreted through the lens of Bronfenbrenner's Ecological Systems Theory. We found that at the micro-level, palatability of medication and large volumes of medication were problematic for young children. Characteristics of the caregiver including absent mothers, grandmothers as caregivers and denial of HIV amongst fathers were themes related to the micro-system. Language barriers and inconsistent attendance of caregivers to monthly clinic visits were factors affecting adherence in the meso-system. Adherence counselling and training were the most problematic features in the exo-system. In the macro-system, the effects of food insecurity and the controversy surrounding the use of traditional medicines were most salient. Increased supervision and regular training amongst lay adherence counsellors are needed, as well as regular monitoring of the persons attending the clinic on the child's behalf.     

Effect of caregivers' depression and alcohol use on child antiretroviral adherence in South Africa

Pediatric antiretroviral adherence is difficult to assess, and subjective measures are affected by reporting bias, which in turn may depend on psychosocial factors such as alcohol use and depression. We enrolled 56 child-caregiver dyads from Cape Town, South Africa and followed their adherence over 1 month via various methods. The Alcohol Use Disorder Inventory Tool and Beck Depression Inventory 1 were used to assess these factors and their affect on pediatric adherence. The median age of the children was 4 years, and median time on antiretrovirals was 20 months. Increased time on ART was associated with poorer adherence via 3-day recall (3DR; p=0.03). Ethanol use was inversely associated with adherence by both subjective measures, 3DR and visual analogue scale (VAS) (both p<0.01), and with Medication Event Monitoring System (MEMS) adherence as a continuous variable. In a multivariate analysis predicting MEMS adherence greater than 95%, including variables that were associated with adherence in univariate analyses, having a mother as a caregiver and shorter time on highly active antiretroviral therapy (HAART) were significantly associated with adherence (odds ratio [OR] 19.2; 95% confidence interval [CI] 1.1-327 and 0.9; 95% CI 0.9-0.99). Pediatric adherence is affected by caregiver alcohol use, but caregiver relationship to the child is most important. This small study suggests that interventions should aim to keep mothers healthy and alive, as well as alcohol-free.     

Disclosure of HIV Status and Adherence to Daily Drug Regimens Among HIV-infected Children in Uganda

Pediatric adherence to daily drug regimens has not been widely assessed in Africa where majority of HIV infected children live. Using in-depth interviews of 42 HIV-infected children taking ART and/or cotrimoxazole prophylaxis, and 42 primary caregivers, at a comprehensive HIV/AIDS clinic in Uganda, we evaluated their adherence experiences for purposes of program improvement. Daily drug regimens provided by the pediatric clinic included cotrimoxazole prophylaxis as well as ART and cotrimoxazole combined. Complete disclosure of HIV status by caregivers to children and strong parental relationships were related to good adherence. Structural factors including poverty and stigma were barriers to adherence even for children who had had complete disclosure and a supportive relationship with a parent. To ensure adherence to life-extending medications, our findings underscore the need for providers to support caregivers to disclose, provide on-going support and maintain open communication with HIV-infected children taking cotrimoxazole prophylaxis and ART.     

Psychological well-being and adherence to antiretroviral therapy among adolescents living with HIV in Zambia

Physical and psychosocial changes during adolescence could influence the psychological well-being and adherence to antiretroviral therapy (ART) of adolescents living with HIV. However, few studies have assessed these two important issues in Zambia. This study aimed at addressing this gap by examining adolescents’ depressive symptoms and ART adherence. This was a mixed-methods study conducted from April to July 2014. We recruited 200 adolescents, ages 15 to 19, who were already aware of their HIV status. We measured depressive symptoms using the short form of the Center for Epidemiologic Studies Depression Scale, and self-reported three-day adherence to ART. We performed logistic regression analysis to identify factors associated with depressive symptoms and non-adherence to ART. For qualitative data, we examined challenges over ART adherence using thematic analysis. Out of 190 adolescents, 25.3% showed high scores of depressive symptoms. Factors associated with depressive symptoms were unsatisfactory relationships with family (Adjusted Odds Ratio [AOR] 3.01; 95% Confidence Interval [CI] 1.20–7.56); unsatisfactory relationships with health workers (AOR 2.68; 95% CI 1.04–6.93); and experience of stigma (AOR 2.99; 95% CI 1.07–8.41). Of all participants, 94.2% were taking ART, but 28.3% were non-adherent. Factors associated with non-adherence to ART were loss of a mother (AOR 3.00; 95% CI 1.05–8.58) and lack of basic knowledge about HIV (AOR 3.25; 95% CI 1.43–7.40). Qualitative data identified the following challenges to ART adherence: management of medication, physical reactions to medicine, and psychosocial distress. The evidence suggests that depressive symptoms and non-adherence to ART were priority issues in late adolescence in Zambia. Health workers should be aware of these issues, and the care and treatment services should be tailored to respond to age-specific needs.     

The Role of HIV Serostatus Disclosure in Antiretroviral Medication Adherence

This study examined the relationship between HIV serostatus disclosure and adherence to antiretroviral therapy (ART). The study was conducted with 215 HIV-seropositive patients who demonstrated poor adherence (<80%) and who were in serodiscordant relationships. Participants completed self-report measures regarding HIV serostatus disclosure and reasons for missing ART doses, as well as electronic monitoring of ART adherence (MEMS caps). Overall, 19% of the sample reported missing medication doses in the last two months due to concerns regarding serostatus disclosure. Participants who reported greater serostatus disclosure to others demonstrated higher rates of adherence, and this relationship remained after controlling for other explanatory variables. The relationship between disclosure and adherence was not mediated by practical support for adherence from others. Interventions to improve ART adherence should address the role of serostatus disclosure by providing patients with skills to maintain adherence in contexts of non-disclosure and to make informed choices regarding selective disclosure.     

Adherence to antiretroviral therapy and its determinants in children with HIV infection – Experience from Paediatric Centre of Excellence in HIV Care in North India

The objective of this study is to assess adherence to antiretroviral therapy (ART) in HIV-infected children using the pill count method, and determine factors leading to adherence failure. Records of 106 children living with HIV (CLHIV) age <15 years and on ART for >6 months were reviewed. Average adherence to ART by pill count method over preceding six months was calculated and re-assessed by 3-day recall method. The caregivers of 105 children and one child himself were interviewed about the problems encountered while giving ART. Median age of enrolled children was 104 (inter-quartile range [IQR] 77.3–133.8) months. Median duration of ART was 25 (IQR 16–35) months. The desired adherence level of >95% during six months of review assessed by pill count was achieved in 95.3% children. The 3-day recall method yielded >95% adherence in 99% children (p ≤ .001). Caregivers of 59 children (56.2%) reported multiple problems while administering drugs. In most instances, problems encountered were related to family/caregivers, the commonest being multiple caregivers, job constraints and death/illness in the family. In conclusion, we found a very high level of adherence to ART in CLHIV. Poor adherence was mainly associated with issues related to the family/caregivers.     

Prevalence and predictors of pediatric disclosure among HIV-infected Nigerian children on treatment

This cross-sectional, facility-based study aimed to determine the prevalence, age, and main agent of disclosure among Nigerian children on antiretroviral therapy. It also sought to elicit barriers to, and facilitators of disclosure; and any association between disclosure and health outcomes. A semi-structured questionnaire was administered to 110 parents/caregivers of children ≥6 years. CD4 count, viral load, opportunistic infections and adherence information were also extracted from medical records for all 110 children. The mean age of the children in the study was 10.15 years (SD?=?2.97), with a median (range) of 9.50 (6–18) years. According to parents/caregivers’ accounts, 34 (30.9%) children knew that they were living with HIV, while 74 (67.3%) did not know. Mean age at disclosure was 10.47 years (SD?=?2.62), with a median (range) of 10.00 (6–17) years. Most children (79.4%) were disclosed at home by their parent(s)/caregiver. The rest were disclosed at the hospital: five were disclosed by a healthcare provider, while two were accidentally disclosed. The most common reasons for disclosure were related to adherence issues – either to help prepare the children to take their medicines or that the child had refused to take his/her medicines (39.4%). This was followed by the child asking a lot of questions related to his/her health, frequent visits to the hospital, or why s/he was taking a lot of medicines even though s/he did not feel ill (27.3%). Most parents/caregivers did not disclose because the child was considered too young (84.0%) or will not be able to keep their HIV status a secret (10.7%). Multivariate logistic regression showed that only child's age was a statistically significant predictor of status disclosure (OR 1.69, p?=?.002; 95% CI 1.21–2.34). There was no association between disclosure and self-reported adherence (p?=?.615).     

Understanding the role of age in HIV disclosure rates and patterns for HIV-infected children in southwestern Uganda

Highly active antiretroviral therapy has enabled HIV-infected children to survive into adolescence and adulthood, creating need for their own HIV diagnosis disclosure. Disclosure has numerous social and medical benefits for the child and family; however, disclosure rates tend to be low, especially in developing countries, and further understanding of the barriers is needed. This study describes the patterns and correlates of disclosure among HIV-infected children in southwestern Uganda. A cross-sectional study was conducted in a referral hospital pediatric HIV clinic between February and April 2012. Interviews were administered to caregivers of HIV-infected children aged 5–17 years. Data collected included socio-demographic characteristics of the child and caregiver, reported disclosure status, and caregivers' reasons for full disclosure or non-full disclosure of HIV status to their children. Bivariate and multivariate analysis was done to establish the socio-demographic correlates of disclosure. Caregivers provided data for 307 children; the median age was eight years (interquartile range [IQR] 7–11) and 52% were males. Ninety-five (31%) children had received full disclosure (48% of whom were >12 years), 22 children (7%) had received partial disclosure, 39 (13%) misinformation, and 151 (49%) no disclosure. Full disclosure was significantly more prevalent among the 9–11 and 12- to 17-year-olds compared to 5- to 8-year-olds (p-value < 0.001). The most frequently stated reason for disclosure was the hope that disclosure would improve medication adherence; the most frequently stated reason for nondisclosure was the belief that the child was too young to understand his/her illness. There was an inverse relationship between age and full disclosure and partial disclosure was rare across all age groups, suggesting a pattern of rapid, late disclosure. Disclosure programs should emphasize the importance of gradual disclosure, starting at younger ages, to maximize the benefits to the child and caregiver.     

Adherence to Antiretroviral Therapy Among HIV-Infected Drug Users: A Meta-Analysis

We conducted a meta-analysis of studies assessing adherence to highly active antiretroviral therapy (HAART) and a qualitative systematic review of factors associated with better HAART outcomes among HIV+ drug users (DU). Thirty-eight studies were considered, which analyzed 14,960 patients (11,394 HIV+ DU, 76.2%). Overall adherence (pooled percent of DU classified as adherent in each study) was 0.60 (95% CI: 0.52–0.68), similar to levels identified by studies conducted with HIV+ patients who are not drug users. Time frame used to measure adherence was an independent predictor of inter-study heterogeneity. The systematic review identified better HAART outcomes among former DU, those with less severe psychiatric conditions, those receiving opioid substitution therapy and/or psychosocial support. Patients initiating HAART with lower viral load and higher CD4 counts, and those without co-infections also had better treatment outcomes. Our findings suggest that HIV+ DU tend to be inappropriately assumed to be less adherent and unlikely to achieve desirable treatment outcomes, when compared to their non-DU cohort.     

One Year After ART Initiation: Psychosocial Factors Associated with Stigma Among HIV-Positive Mozambicans

The pathways through which stigma is associated with psychological distress remains understudied in Africa. This study evaluates stigma among 277 Mozambicans who were on an antiretroviral therapy (ART) regimens for a full year. Using bivariate and multiple regression analyses, we examine psychosocial factors (disclosure decisions, perceived social support, and depression) associated with stigma, at ART initiation and 1 year later. We found 1 year after initiating ART, participants reported no change in stigma, a decrease in perceived social support, and an increase in depressive symptomology. Disclosing HIV status to friends (versus family or partner) was associated with lower levels of stigma. These findings suggest that HIV care in comparable settings should include counselling, support groups, and peer support, that includes stigma and disclosure concerns prior to and during the first year following diagnosis. Most importantly, assessment and treatment of depression should be incorporated into ongoing HIV care.