Bronwyne Coetzee

Structural barriers to adherence to antiretroviral therapy in a resource-constrained setting: the perspectives of health care providers

Abstract The present study examined the chief structural barriers to antiretroviral treatment (ART) adherence from the perspective of health care workers who provide treatment to patients living with HIV and AIDS in South Africa. The main barrier to adherence as identified by participants in the study was the stigma associated with living with HIV, and thus with receiving AIDS treatment. A second barrier was the fact that some patients willfully decide to forgo treatment so that they could retain state disability benefits associated with a low CD4 count. Other barriers included the lack of finances for transport to clinics and food insecurity, especially when medication needed to be taken with food. These barriers to ART adherence are conceptualized in terms of Bronfenbrenners Ecological Systems Theory.

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 Bronfenbrenners 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 childs behalf.

The development of an inventory to assess the structural barriers to clinic attendance and pill-taking amongst users of antiretroviral therapy.

In addition to personal and psychological factors, structural factors may reduce the likelihood of optimal adherence to antiretroviral therapy (ART) among persons living with HIV. In this mixed-method study we report on the development of a scale to assess the salience of various structural barriers to ART adherence. After following conventional guidelines for scale development, two scales measuring structural barriers to adherence to clinic attendance and pill-taking were administered to 291 patients receiving ART at a public hospital in South Africa. Both exploratory and higher order factor analysis indicated that a single underlying general factor was appropriate for both scales. The final scales consisted of 12 items for the structural barriers to clinic attendance scale and 13 items for the structural barriers to medication-taking scale. Both scales displayed excellent internal consistency with Cronbach alpha coefficients above 0.80. Research to determine the construct validity of the scales may be a next step in this line of research.

The perspectives of users of antiretroviral therapy on structural barriers to adherence in South Africa

Abstract Background: The effectiveness of antiretroviral therapy (ART) and the importance of adherence to treatment regimens are widely known. Yet, suboptimal adherence to ART and retention in care of patients still persists and, by many accounts, is fairly widespread. The aim of this study was to identify the structural barriers that influenced adherence among patients who were enrolled in the national ART programme in South Africa. Method: In this qualitative study, semi-structured interviews were conducted with a sample of 10 patients receiving ART at a public hospital in South Africa. Results: The results of the interviews were categorised according to poverty-related, institution-related and social barriers to clinic attendance and pill-taking, which collectively formed the structural barriers to adherence. The chief structural barriers to clinic attendance were time away from work, transport expenses, long waiting times and negative experiences with clinic staff. The chief barriers to pill-taking were food insecurity, stigma and discrimination. Conclusion: The barriers to adherence are discussed. Attention is called to the extraindividual factors that influenced ART adherence. We conclude that contextual factors, such as a healthcare-enabling environment, might play an important role in influencing healthcare-promoting behaviour among patients.

‘ … But i’m still tired’: the experience of fatigue among South African adolescents receiving antiretroviral therapy

ABSTRACT In adults with HIV, fatigue is a common and disabling symptom associated with suboptimal adherence to antiretroviral therapy (ART), poor health and well-being, reduced economic productivity, and increased health care resource use. Fatigue among adolescents with HIV is relatively unexplored. We recruited 14 adolescents with HIV receiving ART in South Africa whom we interviewed about fatigue. We used thematic analysis to analyse the data. Participants reported difficulties in maintaining concentration at school and resorting to self-care strategies such as napping during school hours. Adolescents also described actively avoiding activities thought to lead to fatigue and spoke of being socially excluded by their peers. The findings demonstrate that adolescents experienced symptoms consistent with a definition of fatigue, which had implications for their academic and social lives.

Shortcomings of adherence counselling provided to caregivers of children receiving antiretroviral therapy in rural South Africa

ABSTRACT In order to achieve optimal benefits of antiretroviral therapy (ART), caregivers of children receiving ART are required to attend routine clinic visits monthly and administer medication to the child as prescribed. Yet, the level of adherence to these behaviours varies considerably in many settings. As a way to achieve optimal adherence in rural KwaZulu-Natal, caregivers are required to attend routine counselling sessions at HIV treatment clinics that are centred on imparting information, motivation, and behavioural skills related to medication administration. According to the information-motivation-behavioural skills model, information related to adherence, motivation, and behavioural skills are necessary and fundamental determinants of adherence to ART. The purpose of the study was to observe and document the content of adherence counselling sessions that caregivers attending rural clinics in KwaZulu Natal receive. We observed 25 adherence counselling sessions, which lasted on average 8.1 minutes. Counselling typically consisted of counsellors recording patient attendance, reporting CD4 count and viral load results to caregivers, emphasising dose times, and asking caregivers to name their medications and dosage amounts. Patients were seldom asked to demonstrate how they measure the medication. They were also not probed for problems regarding treatment, even when an unsuppressed VL was reported to a caregiver. This paper calls attention to the sub-optimal level of counselling provided to patients on ART and the urgent need to standardise and improve the training, support, and debriefing provided to counsellors.

The relationship between structural barriers to adherence to antiretroviral therapy, psychological distress, and health-related quality of life

We examined the relationship between structural barriers to antiretroviral therapy and quality of life among 291 antiretroviral therapy users in South Africa. We found significant relationships between structural barriers to clinical attendance and pill taking and various dimensions of quality of life. Psychological distress was not found to be a mediator between structural barriers to clinic attendance and indicators of health-related quality of life, although it was a potential mediator between structural barriers to pill taking and some dimensions of quality of life. Psychological distress partially mediated the relationship between structural barriers to pill taking and physical well-being and between structural barriers to pill taking and emotional well-being.

Video observations of treatment administration to children on antiretroviral therapy in rural KwaZulu-Natal

ABSTRACT For children younger than five years, caregivers are responsible for the measurement and administration of antiretroviral medication doses to children. Failure to adhere to the regimen as prescribed may lead to high viral loads (VLs), immune suppression and ultimately drug resistance. In the content of this study, adherence refers to adequate dosing of the medication by a caregiver. Acquired drug resistance to antiretroviral therapy (ART) is prevalent amongst children in South Africa, and poor adherence to the dosing regimen by caregivers may be associated with this problem. In this qualitative study, we purposively recruited 33 caregiver–child dyads from the Hlabisa HIV Treatment and Care Programme database. Children were divided into three groups based on their VL at the time of recruitment. Children with a VL ≥ 400 cps/ml were grouped as unsuppressed (n = 11); children with a VL ≤ 400 cps/ml were grouped as suppressed (n = 12); and children with no VL data were grouped as newly initiated (n = 10). Caregiver–child dyads were visited at their households twice to document, by means of video recording, how treatment was administered to the child. Observational notes and video recordings were entered into ATLAS.ti v 7 and analysed thematically. Results were interpreted through the lens of Ecological Systems Theory and the information–motivation–behavioural skills model was used to understand and reflect on several of the factors influencing adherence within the child’s immediate environment as identified in this study. Thematic video analysis indicated context- and medication-related factors influencing ART adherence. Although the majority of children in this sample took their medicine successfully, caregivers experienced several challenges with the preparation and administration of the medications. In the context of emerging drug resistance, efforts are needed to carefully monitor caregiver knowledge of treatment administration by healthcare workers during monthly clinic visits.

Fatigue among South African adolescents living with HIV: is the Chalder Fatigue Questionnaire a suitable measure and how common is fatigue?

ABSTRACT Evidence suggests that HIV-infected adolescents experience elevated levels of fatigue that impacts their functioning at school and other important aspects of their lives. Yet, fatigue has not been measured amongst this population group. In this cross-sectional, mixed-methods study, we explored the psychometric properties of the 11-item Chalder Fatigue Questionnaire (CFQ) amongst 134 South African adolescents (11–18 years old) receiving antiretroviral therapy in the Western Cape. Using the Likert scoring method for the CFQ, the mean total score was 14.89 (SD = 3.83) and about a quarter (n = 33, 24.63%) of adolescents scored ≥18, indicating problematic levels of fatigue. The CFQ demonstrated good internal consistency with a Cronbach’s alpha of 0.83 (0.84, with item 11 deleted), which is comparable to other validation studies. On the first iteration of the principal component analysis (PCA) with a Varimax rotation, three factors accounted for 59.15% of the variance. However, the third factor consisted of one item only which we chose to remove from the analysis. On the second iteration of the PCA, a two-factor solution was retained that accounted for 54.24% of the variance. The first factor, ‘Physical fatigue’, represented the first eight items on the scale. The second factor, ‘Mental fatigue’, represented items 9 and 10. The CFQ also demonstrated modest content and construct validity. The CFQ is a short, easy-to-use and cost-effective measure of fatigue, and demonstrates reliability and validity amongst a South African sample of adolescents. Given the high rate of fatigue amongst our participants, we recommend that future interventions be developed to reduce fatigue among HIV-infected adolescents, which may ultimately lead to improvements in school performance and social functioning. Future research may include test–retest reliability of the CFQ in order to show stability over time.

Psychosocial predictors of quality of life among South Africa adolescents receiving antiretroviral therapy

PurposeMinimal research has been conducted to understand how fatigue influences quality of life (QOL) among adolescents living with HIV. The purpose of the study was to examine the relationship between fatigue, sleep disturbance, depression, anxiety, pain and QOL among adolescents receiving antiretroviral therapy (ART).MethodsUsing a cross-sectional survey design, we studied 134 South African adolescents receiving an ART at community clinics.ResultsParticipants in general reported low levels of fatigue, insomnia, distress and pain and non-problematic levels of QOL. In the regression model, the linear combination of these variables explained 49% of the variance in QOL, a large effect size. Insomnia, anxiety, and depression significantly predicted QOL but surprisingly fatigue and pain did not.ConclusionsMany members of the sample experienced non-clinical levels of sleep disturbance, fatigue and psychosocial distress. Similarly, QOL was within the normal range. These findings are surprising as the commonly held assumption is that adolescents living with HIV, especially those of poorer socio-economic backgrounds, would experience lower QOL than the norm. Even though scores on the instruments measuring these variables fell in the non-clinical range, they were still robustly predictive of poor QOL. Future research may address the relationship between self-reported adherence and QOL, possibly by examining the role of viral load as a mediating variable. Further research may also focus on non-adherent adolescents to understand the ways in which fatigue and other factors such as school functioning and social interaction influence QOL.