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The relationship between structural barriers to adherence to antiretroviral therapy, psychological distress, and health-related quality of life
Abstract
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.
... For example, in South Africa specifically, depression, post-traumatic stress disorder (PTSD), and alcohol and other substance use are associated with decreased engagement in HIV care, poorer ART adherence, higher viral load over time, and lower CD4 cell counts [2,[5][6][7][8][9][10][11][12][13]. Similarly, food insecurity [3,[14][15][16][17][18], poverty [3,14], housing instability [19], and other structural challenges [3,20] have been associated with worse HIV outcomes. Poverty, for example, is a prevalent barrier to HIV care [3] and ART adherence [9,21], and associated food insecurity is related to reduced ART adherence [22,23]. ...
In South Africa, little is known about interrelationships between syndemic problems among people with HIV (PWH). A better understanding of syndemic problems may yield important information regarding factors amenable to mitigation. We surveyed 194 PWH in Khayelitsha, outside of Cape Town, South Africa. We used network analysis to examine the frequency of 10 syndemic problems and their interrelationships. Syndemic problems among PWH in South Africa were common; 159 (82.8%) participants reported at least 2 co-occurring syndemic problems and 90 (46.9%) endorsed 4 or more. Network analysis revealed seven statistically significant associations. The most central problems were depression, substance use, and food insecurity. Three clusters of syndemics were identified: mood and violence; structural factors; and behavioral factors. Depression, substance use, and food insecurity commonly co-occur among PWH in sub-Saharan Africa and interfere with HIV outcomes. Network analysis can identify intervention targets to potentially improve HIV treatment outcomes.
... Common experiences include disclosure of their HIV status to others [21], stigma and discrimination [21,22], medical care-seeking [23], and commencement of anti-retroviral therapy. These aspects of living with HIV are likely to be influenced by various social and structural barriers to medical help-seeking and treatment adherence such as employment status, food insecurity, transport, and challenges in the public health care system [24][25][26][27][28]. If individuals who receive a positive HIV test result also have a CMD at the time of testing, they may experience difficulties in negotiating the various challenges associated with living with HIV and successfully seeking treatment. ...
We administered the Structured Clinical Interview for the DSM to 485 persons seeking HIV testing at five community testing centres in South Africa to determine the prevalence of common mental disorders among this population. The prevalence estimates for the various disorders were as follows: major depressive disorder: 14.2 % (95 % CI [11.1, 17.3]); generalised anxiety disorder 5.0 % (95 % CI [3.07, 6.93]); posttraumatic stress disorder 4.9 % (95 % CI [2.98, 6.82]); and alcohol use disorder 19.8 % (95 % CI [16.26, 23.34]). Our findings imply the need to research the integration of screening and referral trajectories in the context of voluntary HIV counselling and testing.
... HIV vaccine trials have also gained momentum in recent years. This has resulted in new programs of research on ARV adherence (e.g., Kagee, Steel, & Coetzee, 2014), as well as the psychosocial and ethical aspects of vaccine trials (e.g., Moorhouse, Slack, Quayle, Essack, & Lindegger, 2014). More nuanced understandings of the social context of HIV have emerged, detailing, for example, the relations between gendered power inequities, intimate partner violence and HIV (e.g., Jewkes, Dunkle, Nduna, & Shai, 2010), and the importance of the history and materiality of intimate relationships and sexuality in South Africa (e.g., Brouard & Crewe, 2012). ...
As part of a growing literature on the histories of psychology in the Global South, this article outlines some historical developments in South African psychologists' engagement with the problem of "health." Alongside movements to formalize and professionalize a U.S.-style "health psychology" in the 1990s, there arose a parallel, eclectic, and more or less critical psychology that contested the meaning and determinants of health, transgressed disciplinary boundaries, and opposed the responsibilization of illness implicit in much health psychological theorizing and neoliberal discourse. This disciplinary bifurcation characterized South African work well into the postapartheid era, but ideological distinctions have receded in recent years under a new regime of knowledge production in thrall to the demands of the global market. The article outlines some of the historical-political roots of key trends in psychologists' work on health in South Africa, examining the conditions that have impinged on its directions and priorities. It raises questions about the future trajectories of psychological research on health after 20 years of democracy, and argues that there currently is no "health psychology" in South Africa, and that the discipline is the better for it. (PsycINFO Database Record
... Such individuals report not taking their pills consistently because of a fear of side-effects while traveling, difficulties in finding clean water or food to aid the ingestion of pills, and a preference to delay taking pills until the destination is reached [16 & ]. HIV-positive individuals who traveled frequently to family events described a reluctance to take their medications around family members and in some cases resorted to hiding their pills in bottles with different labels so as to not disclose their status [62,63]. One important barrier to treatment adherence was related to the site where an individual registered and initiated ART. ...
Purpose of review:
Health policy makers aspire to achieve an HIV treatment 'cascade' in which diagnostic and treatment services are accessed early and routinely by HIV-infected individuals. However, migrants and highly mobile individuals are likely to interact with HIV treatment programs and the healthcare system in ways that reflect their movement through time and place, affecting their successful progression through the HIV treatment cascade. We review recent research that has examined the challenges in effective and sustained HIV treatment for migrants and mobile populations.
Recent findings:
Mobility is associated with increased risk of antiretroviral therapy (ART) nonadherence, lost to follow-up, deterioration in CD4 count, HIV-related death, development of drug resistance and general noncontinuity of HIV care. Migrants' slow progression through the HIV treatment cascade can be attributed to feelings of confusion, helplessness; an inability to effectively communicate in the native language; poor knowledge about administrative or logistical requirements of the healthcare system; the possibility of deportation or expulsion based on the legal status of the undocumented migrant; fear of disclosure and social isolation from the exile or compatriot group. Travel or transition to the host country commonly makes it difficult for migrants to remain enrolled in ART programs and to maintain adherence to treatment.
Summary:
Existing public health systems fail to properly account for migration, and actionable knowledge of the health requirements of migrants is still lacking. A large body of research has shown that migrants are more likely to enter into the healthcare system late and are less likely to be retained at successive stages of the HIV treatment cascade. HIV-infected migrants are especially vulnerable to a wide range of social, economic and political factors that include a lack of direct access to healthcare services; exposure to difficult or oppressive work environments; the separation from family, friends and a familiar sociocultural environment. Realizing the full treatment and preventive benefits of the UNAIDS 90-90-90 strategy will require reaching all marginalized subpopulations of which migrants are a particularly large and important group.
In this study, we explore the themes related to mental health considerations in HIV/AIDS research published in the South African Journal of Psychology (SAJP) from January 2008 to December 2018. Utilising an exploratory research design, we purposively sampled 35 empirical articles from the SAJP to represent general trends. We conducted a thematic content analysis to identify recurring constructs and themes, following established guidelines. Key themes identified include the intersection between stigma, mental health and access to healthcare; the impact of HIV on cognitive functioning and performance; behavioural vulnerabilities and power dynamics; and challenges in healthcare service utilisation. The cumulative evidence from the SAJP highlights the need for targeted, culturally sensitive interventions that deal with systemic inefficiencies and stigma in the healthcare system. Interventions should also consider broader socio-economic factors and promote equitable relationships. In addition, it is vital to ensure that healthcare providers receive ongoing education on legal and ethical matters to aid in sound ethical decision-making. An all-encompassing, coordinated strategy is key to improving the lives of people living with HIV/AIDS in South Africa.
Multilevel factors (individual and structural) influence adherence to antiretroviral therapy, particularly in high HIV prevalence areas such as South Africa. The present study examined the relative importance of structural barriers to HIV care and behavioral health factors, depression and alcohol use, in Khayelitsha, Cape Town, South Africa. People receiving HIV care in six primary care clinics in Khayelitsha (N = 194) completed the Center for Epidemiologic Studies Depression Scale, the Alcohol Use Disorders Identification Test, the Structural Barriers to Medication Taking questionnaire, and a qualitative rating of past-two-week adherence. Correlations were employed to examine associations among these variables, and hierarchical regression analysis was used to examine the unique effects of structural barriers over and above depression and alcohol use as predictors of adherence. Participants were primarily Black South African (99%) women (83%), and 41 years old on average. All four variables were significantly correlated. The hierarchical regression analysis showed that among behavioral health predictors, alcohol use alone significantly predicted ART adherence (b = -.032, p = .002). When structural barriers was added to the model, it was the only significant unique predictor of ART adherence (b = -1.58, p < .001). Findings highlight the need to consider structural vulnerabilities in HIV care in South Africa when developing behavioral health interventions.
Objetivo:
Conocer las impresiones de los pacientes con terapia antirretroviral acerca de su calidad de vida relacionada con la salud (CVRS), salud y bienestar general respecto a la infección por VIH.
Material y métodos:
Estudio observacional, descriptivo, prospectivo y transversal. Se incluyeron pacientes mayores de edad VIH positivos que recogiesen tratamiento en el Servicio de Farmacia durante 3 meses. Como medida de la CVRS, se utilizó el World Health Organization Quality of Life in HIV-infected Persons instrument (WHOQOL-HIV-BREF) versión castellano. Se midieron seis dominios: capacidad física, factores psicológicos, nivel de independencia, relaciones sociales, entorno y creencias personales/religiosas/espirituales más 5 preguntas específicas de infección por VIH/SIDA. El cuestionario fue anónimo y auto-administrado. Se recogieron edad, sexo, estado civil y nivel de educación máximo alcanzado.
Se calcularon medianas y rangos intercuartílicos (IQR) para cada dominio, así como los posibles factores influyentes.
Resultados:
Se incluyeron 69 pacientes. 72,5% varones. Edad (mediana [IQR])=50,4 [55,1-43] años. Nivel de educación: ninguno 5,8%; educación primaria 37,7%; secundaria 47,8%; terciaria 8,7%. Estado civil: casado/a 21,9%; en pareja 15,9%; divorciado/a 7,2%; soltero/a 47,8%; viudo/a 7,2%.
Resultados para cada dominio: capacidad física (mediana [IQR])=75 [65-80]; factores psicológicos=68 [57-76]; nivel de independencia=70 [59-80]; relaciones sociales=65 [58-80]; entorno=70 [64-80] y creencias personales/religiosas/espirituales=63 [55-75]. Resultado global=67 [71-78].
La edad (≤50 años) se relacionó con la CVRS (diferencia de medias IC95%; p) en el dominio de capacidad física (11,41 IC95% 4,12-18,69; p=0,03), nivel de independencia (10,47 IC95% 1,85-19,08; p=0,018) y en el resultado global (8,33 IC95% 1,99-14,67; p=0,011).
Conclusiones:
La CVRS fue inferior en el dominio de creencias personales, seguida por las relaciones sociales. La edad superior a 50 años se relacionó con una peor CVRS.
Adherence to antiretroviral therapy (ART) is critical for reducing HIV/AIDS morbidity and mortality. Food insecurity (FI) is emerging as an important barrier to adherence to care and treatment recommendations for people living with HIV (PLHIV), but this relationship has not been comprehensively examined. Therefore, we reviewed the literature to explore how FI may impact ART adherence, retention in medical care, and adherence to health care recommendations among PLHIV. We found data to support FI as a critical barrier to adherence to ART and to other health care recommendations among HIV-infected adults, HIV-infected pregnant women and their HIV-exposed infants, and child and adolescent populations of PLHIV. Associations between FI and ART non-adherence were seen in qualitative and quantitative studies. We identified a number of mechanisms to explain how food insecurity and ART non-adherence may be causally linked, including the exacerbation of hunger or ART side effects in the absence of adequate food and competing resource demands. Interventions that address FI may improve adherence to care and treatment recommendations for PLHIV.
The development of antiretroviral drugs has significantly changed the perception of HIV/AIDS from a very fatal to a chronic and potentially manageable disease, and the availability and administration of antiretroviral therapy (ART) has significantly reduced mortality and morbidity associated with HIV and AIDS. There is a relationship between ART and quality of life of people living with HIV and AIDS, and several studies have reported a strong positive association between ART and improved quality of life in different domains among people living with HIV and AIDS in both developed and developing countries. However, a few studies have reported on the negative effects of ART, which directly or indirectly relate to the quality of life and longevity of HIV-infected persons. In this review, the effects and benefits of ART on people living with HIV and AIDS based on studies done in developed and developing countries is examined.
Given the longevity achievable with current prophylactic and therapeutic strategies for persons with HIV infection, quality of life (QOL) has emerged as a significant medical outcome measure, and its enhancement has an important goal. This review highlights the relevance and complexity of physical, psychological, and social factors as determinants of health-related quality of life in HIV-infected persons. Existing data suggest that physical manifestations, antiretroviral therapy, psychological well-being, social support systems, coping strategies, spiritual well-being, and psychiatric comorbidities are important predictors of QOL in this population. Consequently, the impact of HIV infection on the dimensions of QOL, including physical and emotional well-being, social support systems, and life roles, has emerged as a key issue for persons infected with HIV.
Structural barriers to antiretroviral therapy (ART) adherence are economic, institutional, political and cultural factors, that collectively influence the extent to which persons living with HIV follow their medication regimens. We identify three sets of structural barriers to ART adherence that are salient in Southern Africa: poverty-related, institutional, and political and cultural. Examples of poverty-related barriers are competing demands in the context of resource-constrained settings, the lack of transport infrastructure, food insecurity, the role of disability grants and poor social support. Examples of institutional factors are logistical barriers, overburdened health care facilities, limited access to mental health services and difficulties in ensuring adequate counselling. Examples of political and cultural barriers are controversies in the provision of treatment for AIDS, migration, traditional beliefs about HIV and AIDS, poor health literacy and gender inequalities. In forging a way forward, we identify ways in which individuals, communities and health care systems may overcome some of these structural barriers. Finally, we make recommendations for further research on structural barriers to ART adherence. In all likelihood, enhancing adherence to ART requires the efforts of a variety of disciplines, including public health, psychology, anthropology, sociology and medicine.
Food insecurity is emerging as an important barrier to antiretroviral (ARV) adherence in sub-Saharan Africa and elsewhere, but little is known about the mechanisms through which food insecurity leads to ARV non-adherence and treatment interruptions.
We conducted in-depth, open-ended interviews with 47 individuals (30 women, 17 men) living with HIV/AIDS recruited from AIDS treatment programs in Mbarara and Kampala, Uganda to understand how food insecurity interferes with ARV therapy regimens. Interviews were transcribed, coded for key themes, and analyzed using grounded theory.
Food insecurity was common and an important barrier to accessing medical care and ARV adherence. Five mechanisms emerged for how food insecurity can contribute to ARV non-adherence and treatment interruptions or to postponing ARV initiation: 1) ARVs increased appetite and led to intolerable hunger in the absence of food; 2) Side effects of ARVs were exacerbated in the absence of food; 3) Participants believed they should skip doses or not start on ARVs at all if they could not afford the added nutritional burden; 4) Competing demands between costs of food and medical expenses led people either to default from treatment, or to give up food and wages to get medications; 5) While working for food for long days in the fields, participants sometimes forgot medication doses. Despite these obstacles, many participants still reported high ARV adherence and exceptional motivation to continue therapy.
While reports from sub-Saharan Africa show excellent adherence to ARVs, concerns remain that these successes are not sustainable in the presence of widespread poverty and food insecurity. We provide further evidence on how food insecurity can compromise sustained ARV therapy in a resource-limited setting. Addressing food insecurity as part of emerging ARV treatment programs is critical for their long-term success.
The cost of transportation for monthly clinic visits has been identified as a potential barrier to antiretroviral (ARV) adherence in sub-Saharan Africa and elsewhere, although there is limited data on this issue. We conducted open-ended interviews with 41 individuals living with HIV/AIDS and attending a clinic in Mbarara, Uganda, to understand structural barriers to ARV adherence and clinical care. Almost all respondents cited the need to locate funds for the monthly clinic visit as a constant source of stress and anxiety, and lack of money for transportation was a key factor in cases of missed doses and missed medical appointments. Participants struggled with competing demands between transport costs and other necessities such as food, housing and school fees. Our findings suggest that transportation costs can compromise both ARV adherence and access to care. Interventions that address this barrier will be important to ensure the success of ARV programs in sub-Saharan Africa.
Conventional models of stress and coping are highly individualistic and give little attention to circumstances and involvement with others. A more contextual perspective on wives of patients who had suffered myocardial infarctions was adopted in this study. Wives' distress was related to the character of the infarction, but initial contact with medical personnel and marital quality each had independent contributions. Other analyses related wives' distress to their and the patients' coping. Wives' protective buffering of patients had a positive relationship with their own distress, even though Smith & Coyne (1988) have shown it contributes to patients' self-efficacy. Results suggest the need to acknowledge the limitations on adaptation imposed by health and the health care system. Also, initial conditions set a trajectory for later adaptation and there may be tradeoffs between preserving one's own well-being and contributing to a partner's efficacy.
Adherence to antiretroviral therapy is a powerful predictor of survival for individuals living with human immunodeficiency virus (HIV) and AIDS. Concerns about incomplete adherence among patients living in poverty have been an important consideration in expanding the access to antiretroviral therapy in sub-Saharan Africa.
To evaluate estimates of antiretroviral therapy adherence in sub-Saharan Africa and North America.
Eleven electronic databases were searched along with major conference abstract databases (inclusion dates: inception of database up until April 18, 2006) for all English-language articles and abstracts; and researchers and treatment advocacy groups were contacted. Study Selection and Data Abstraction To best reflect the general population, studies of mixed populations in both North America and Africa were selected. Studies evaluating specific populations such as men only, homeless individuals, or drug users, were excluded. The data were abstracted in duplicate on study adherence outcomes, thresholds used to determine adherence, and characteristics of the populations. A random-effects meta-analysis was performed in which heterogeneity was examined using multivariable random-effects logistic regression. A sensitivity analysis was performed using Bayesian methods.
Thirty-one studies from North America (28 full-text articles and 3 abstracts) and 27 studies (9 full-text articles and 18 abstracts) from sub-Saharan Africa were included. African studies represented 12 sub-Saharan countries. Of the North American studies, 71% used patient self-report to assess adherence; this was true of 66% of the African assessments. Studies reported similar thresholds for adherence monitoring (eg, 100%, >95%, >90%, >80%). A pooled analysis of the North American studies (17,573 patients total) indicated a pooled estimate of 55% (95% confidence interval, 49%-62%; I2, 98.6%) of the populations achieving adequate levels of adherence. Our pooled analysis of African studies (12,116 patients total) indicated a pooled estimate of 77% (95% confidence interval, 68%-85%; I2, 98.4%). Study continent, adherence thresholds, and study quality were significant predictors of heterogeneity. Bayesian analysis was used as an alternative statistical method for combining adherence rates and provided similar findings.
Our findings indicate that favorable levels of adherence, much of which was assessed via patient self-report, can be achieved in sub-Saharan African settings and that adherence remains a concern in North America.
Adherence levels in Africa have been found to be better than those in the US. However around one out of four ART users fail to achieve optimal adherence, risking drug resistance and negative treatment outcomes. A high demand for 2nd line treatments (currently ten times more expensive than 1st line ART) undermines the sustainability of African ART programs. There is an urgent need to identify context-specific constraints to adherence and implement interventions to address them. We used rapid appraisals (involving mainly qualitative methods) to find out why and when people do not adhere to ART in Uganda, Tanzania and Botswana. Multidisciplinary teams of researchers and local health professionals conducted the studies, involving a total of 54 semi-structured interviews with health workers, 73 semi-structured interviews with ARTusers and other key informants, 34 focus group discussions, and 218 exit interviews with ART users. All the facilities studied in Botswana, Tanzania and Uganda provide ARVs free of charge, but ART users report other related costs (e.g. transport expenditures, registration and user fees at the private health facilities, and lost wages due to long waiting times) as main obstacles to optimal adherence. Side effects and hunger in the initial treatment phase are an added concern. We further found that ART users find it hard to take their drugs when they are among people to whom they have not disclosed their HIV status, such as co-workers and friends. The research teams recommend that (i) health care workers inform patients better about adverse effects; (ii) ART programmes provide transport and food support to patients who are too poor to pay; (iii) recurrent costs to users be reduced by providing three-months, rather than the one-month refills once optimal adherence levels have been achieved; and (iv) pharmacists play an important role in this follow-up care.
The Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System is a collection of health-related quality of life (HRQOL) questionnaires targeted to the management of chronic illness. The measurement system, under development since 1987, began with the creation of a generic CORE questionnaire called the Functional Assessment of Cancer Therapy-General (FACT-G). The FACT-G (now in Version 4) is a 27-item compilation of general questions divided into four primary QOL domains: Physical Well-Being, Social/Family Well-Being, Emotional Well-Being, and Functional Well-Being. It is appropriate for use with patients with any form of cancer, and extensions of it have been used and validated in other chronic illness condition (e.g., HIV/AIDS; multiple sclerosis; Parkinson's disease; rheumatoid arthritis), and in the general population. The FACIT Measurement System now includes over 400 questions, some of which have been translated into more than 45 languages. Assessment of any one patient is tailored so that the most-relevant questions are asked and administration time for any one assessment is usually less than 15 minutes. This is accomplished both by the use of specific subscales for relevant domains of HRQOL, or computerized adaptive testing (CAT) of selected symptoms and functional areas. FACIT questionnaires can be administered by self-report (paper or computer) or interview (face-to-face or telephone). Available scoring, normative data and information on meaningful change now allow one to interpret results in the context of a growing literature base.
Melvyn Freeman qualified as a clinical psychologist at the University of the Witwatersrand in 1983. Since then he has concentrated on public mental health through policy-oriented research, policy and legislation development and implementation, teaching, and consultancies to developing countries. He is currently Chief Research Specialist at the Human Sciences Research Council program on the Social Aspects of HIV/AIDS and Health researching mental health and HIV/AIDS. In addition, he is a consultant to the World Health Organization on Mental Health Policy, Legislation and Mental Health and HIV/AIDS. He is also extraordinary Professor of Psychology at the University of Stellenbosch. Previously he was the Director of Mental Health and Substance Abuse in the National Department of Health in South Africa and Deputy Director of the Centre for Health Policy at the University of the Witwatersrand. He has published extensively in his research areas and regularly gives talks and presentations in the area of mental health, both locally and internationally.
The CES-D scale is a short self-report scale designed to measure depressive symptomatology in the general population. The items of the scale are symptoms associated with depression which have been used in previously validated longer scales. The new scale was tested in household interview surveys and in psychiatric settings. It was found to have very high internal consistency and adequate test- retest repeatability. Validity was established by pat terns of correlations with other self-report measures, by correlations with clinical ratings of depression, and by relationships with other variables which support its construct validity. Reliability, validity, and factor structure were similar across a wide variety of demographic characteristics in the general population samples tested. The scale should be a useful tool for epidemiologic studies of de pression.
Abstract In recent years, a small but growing body of literature on the associations between common mental disorders and adherence to antiretroviral therapy (ART) has emerged. The present study builds on the growing body of research by investigating associations between symptoms of depression, symptoms of anxiety and adherence to ART. We studied a convenience sample of 101 South African ART users to determine the severity of symptoms of depression and anxiety and their association with self-reported adherence to ART. Based on the standardised cut-off scores recorded using the Beck Depression Inventory - Second Edition (BDI II), 40.4% of participants demonstrated moderate to severe symptoms of depression. Moreover, results from the Beck Anxiety Inventory (BAI) indicated that 28.7% of the study participants demonstrated moderate to severe symptoms of anxiety. Biserial correlations and logistic regression analysis demonstrated a significant relationship between symptoms of depression and adherence. The results indicate that patients reporting non-perfect adherence were approximately three times more likely (OR=2.73; CI=1.09-6.82) to have moderate to severe symptoms of depression than those reporting perfect adherence. The present findings are in keeping with those of previous studies, suggesting that depression may act as a barrier to ART adherence.
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.
Abstract This study reports on a pilot project to train eight patient advocates (PAs) who provided psychosocial support to users of antiretroviral therapy (ART) in basic counselling skills. PAs received 18 hours of training over the course of 3 months. A cadre of raters evaluated the PAs after the training using the Counsellor Rating Form and a Counsellor Evaluation Form. Counsellor activities that were rated as approaching acceptability were: reflection of content, encouraging, summarising, gathering data, exploring alternatives, giving directives and terminating the session. Counselling activities rated as requiring further training were reflection of feeling, interpretation, exploring logical consequences, confrontation, identifying positive assets and challenging. These results are discussed in the context of creating and sustaining a health-enabling community for ART users.
Abstract Human Immunodeficiency Virus (HIV) and substance use disorders can both significantly impact a patient's quality of life (QOL), and it is, therefore, important to assess QOL throughout treatments for these chronic conditions. This study evaluated the psychometric properties of the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) in 170 HIV-positive patients who participated in a substance abuse treatment study. Internal consistency of the FAHI was good. Convergent and discriminant validity were generally supported with comparisons to other patient-reported measures. FAHI scores were not significantly associated with viral loads or CD4 counts, and they were similar in patients with and without AIDS. Patients who achieved longer durations of drug and alcohol abstinence during treatment reported better QOL post-treatment. The FAHI appears to be a reliable and valid measure for assessing QOL in HIV-positive patients with concurrent drug and alcohol use disorders.
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 Bronfenbrenner's Ecological Systems Theory.
This paper reports on the field testing, empirical derivation and psychometric properties of the World Health Organisation Quality of Life assessment (the WHOQOL). The steps are presented from the development of the initial pilot version of the instrument to the field trial version, the so-called WHOQOL-100. The instrument has been developed collaboratively in a number of centres in diverse cultural settings over several years; data are presented on the performance of the instrument in 15 different settings worldwide.
The Functional Assessment of Human Immuno-deficiency Virus (HIV) Infection (FAHI) quality of life instrument was developed using a combination of conceptual and empirical strategies. The core, general health-related quality of life instrument is the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire. The FACT-G was selected to enable comparison of data across two similar, life-threatening conditions and because of its desirable psychometric properties. Initial data on both the relevance (applicability) of the FACT-G to the HIV population and the generation and testing of questions for an HIV-specific subscale were encouraging. Consequently, the FACT-G and a 9-item HIV-specific subscale were combined and tested in 196 patients in three categories: an English-speaking stress management sample from Chicago, illinois (n = 110); an English-speaking urban, mixed race sample from Chicago (n = 71); and a Spanish-speaking urban sample from Chicago and San Juan, Puerto Rico (n = 64). With the exception of the Social Well-being subscale, the subscales of the FACT-G demonstrated good internal consistency reliability across all three samples (alpha range = 0.72-0.88). Total FAHI scores produced consistently high alpha coefficients (0.89-0.91). Concurrent validity data included moderately strong associations with other measures of similar concepts and an ability to distinguish groups of patients by activity level and disease severity. Sensitivity to change in mood disturbance and responsiveness to a stress management intervention were also evident. The 9-item HIV-specific subscale demonstrated relatively low alpha coefficients (range = 0.53-0.71) and marginal sensitivity to change, leading to supplementation of content with an additional 11 items, creating a 20-item HIV-specific subscale that is currently being tested. Clinical trial and clinical practice investigators are encouraged to use the FACT-G in its current (version 3) form when evaluating group differences and within-group change over time. It should prove particularly useful when comparing clinical trial and clinical practice data for cancer vs. HIV-infected patients and in the evaluation of treatments for HIV disease and HIV-related malignancy. The supplemental 20 questions comprising the revised HIV-specific subscale are undergoing further testing, and may ultimately enhance the value of this measurement system.
This analysis focuses on primary prevention for people living with HIV and the importance of actively involving HIV-infected people in developing prevention strategies. Structural-level or policy interventions--as opposed to behavioral or psychological interventions--help shape the world in which HIV-infected people live. Thus, we assess potential policy-level interventions that may serve either as a barrier to or a facilitator of primary HIV prevention from the perspective of the people living with HIV. Among potential barriers, we discuss criminalization of nondisclosure in specific sexual situations, laws limiting travel and immigration, name-based HIV reporting and mandatory partner notification. Under potential facilitators, we discuss confidentiality laws, antidiscrimination protections, expansion of HIV primary care, and primary prevention programs designed to actively involve infected people. Ultimately, whether any given policy is a 'barrier' or 'facilitator' of primary HIV prevention is an empirical question, dependent on the acceptability of an intervention to those already infected and those at risk, thus policy research evaluating the impact of structural factors on people living with HIV is encouraged.
AIDS-related stigmas are pervasive in some segments of South African society and stigmas can impede efforts to promote voluntary counselling and testing and other HIV-AIDS prevention efforts. The current study examined associations among the belief that AIDS is caused by spirits and supernatural forces, AIDS-related knowledge and AIDS-related stigmas. A street intercept survey with 487 men and women living in a Black township in Cape Town, South Africa showed that 11% (n=54) believed that AIDS is caused by spirits and supernatural forces, 21% (n=105) were unsure if AIDS is caused by spirits and the supernatural, and 68% (n=355) did not believe that AIDS is caused by spirits and supernatural forces. Multiple logistic regression analyses controlling for participant age, gender, years of education and survey venue showed that people who believed HIV-AIDS is caused by spirits and the supernatural demonstrated significantly more misinformation about AIDS and were significantly more likely to endorse repulsion and social sanction stigmatizing beliefs against people living with HIV-AIDS. However, nearly all associations between beliefs that AIDS is caused by spirits and AIDS stigmas were non-significant when logistic regressions were repeated with AIDS-related knowledge included as a control variable. This finding suggests that relationships between traditional beliefs about the cause of HIV-AIDS and AIDS stigmas are mediated by AIDS-related knowledge. AIDS education efforts are urgently needed to reach people who hold traditional beliefs about AIDS to remedy AIDS stigmas.
To describe the approach used to promote adherence to antiretroviral therapy (ART) and to present the outcomes in the first primary care public sector ART project in South Africa.
The study is a prospective open cohort, including all adult patients naive to previous ART who received antiretroviral treatment in Khayelitsha, from May 2001 to the end of 2002. Patients were followed until their most recent visit before 31 July 2003.
Plasma viral load was determined at 3, 6, 12, 18 and 24 months after ART was initiated, and CD4 cell counts 6-monthly. Kaplan-Meier estimates were determined for the cumulative proportions of patients surviving, and patients with viral load suppression and viral rebound.
A total of 287 patients were initiated on triple therapy. The probability of survival was 86.3% at 24 months. The median CD4 cell count gain was 288 cells/microliters at 24 months. Viral load was less than 400 copies/ml in 89.2, 84.2 and 69.7% of patients at 6, 12 and 24 months, respectively. The cumulative probability of viral rebound (two consecutive HIV-RNA measurements above 400 copies/ml) after achieving an HIV-RNA measurement below 400 copies/ml was 13.2% at 18 months.
The study shows that, with a standard approach to patient preparation and strategies to enhance adherence, a cohort of patients on ART can be retained in a resource-limited setting in a developing country. A high proportion of patients achieved suppression of viral replication. The subsequent probability of viral rebound was low.
Many individuals newly infected with HIV struggle with psychosocial influences, such as poverty, stigma, depression, substance abuse, domestic violence, and/or cultural beliefs, which can affect their quality of life (QoL), willingness to seek medical care, and motivation to adhere to therapy, ultimately influencing health outcomes. The Health Resources and Services Administration established the Ryan White Care Act (RWCA) to provide health care to people living with HIV/AIDS (PLWH). Part F of the RWCA, the Special Projects of National Significance (SPNS) Program, focuses on identifying issues affecting care for PLWH. One cohort of SPNS grantees has identified numerous needs and vulnerabilities of underserved HIV-infected patients and supports the development of innovative HIV/AIDS ancillary services for them. In this article, a review of the underlying psychosocial sequelae of HIV infection and their impact on QoL is presented, and recommendations for providers to assist in improving the QoL of PLWH are discussed.
Considerable debate has centred on the question of traumatisation among individuals who have survived human rights violations in societies that have undergone political conflict. In order to gain an estimate of the extent of long-term traumatisation among political activists who experienced torture and abuse in detention during the apartheid era in South Africa, a sample of 148 survivors of such experiences were recruited in a cross-sectional study and asked to complete the Hopkins Symptom Checklist (HSCL), the Impact of Event Scale (IES), and the Trauma Symptoms section of the Harvard Trauma Questionnaire (HTQ). The proportions of the sample that scored above the clinical cut-points on these measures were calculated. On the HSCL, 14.19% of the sample scored above the cut-point for clinical significance of 44; on the IES, 17.57% scored above the clinical cut-point of 44; and on the HTQ, 37.83% scored above the cut-point of 75. Moreover, the sample's mean scores were significantly higher than the cut-point for clinically significant distress on the HSCL (p < 0.001); significantly lower than the cut-point for severe traumatisation on the IES (p < 0.001); and non-significantly lower than the cut-point for clinically significant traumatisation on the HTQ (p = 0.074). These results are considered in terms of current theoretical debates on the relevance and applicability of posttraumatic stress disorder as a circumscribed nosological entity in developing countries that are in the process of coming to terms with a history of political conflict.
Research on adherence to combination antiretroviral therapy has up to now focused largely upon problems of definition and measurement, and on the identification of barriers and supports. This paper examines the intersection between taking HAART and building a life with HIV/AIDS. Data consist of 214 qualitative interviews with 52 HIV-positive, active illegal drug users. A interpretive analysis drawing upon stigma and fear of disclosure as analytical constructs was applied to explain working tensions between efforts to develop social relationships on the one hand, and attempts to safeguard health through adherence on the other. The analysis specifies a mechanism through which stigma as a social process results in marginalization and exclusion. The hierarchical organization of multiple stigma is also noted. Loneliness and the desire for relatedness is intensified by drug use. Results suggest that persons with HIV/AIDS will not consistently subordinate other interests to prioritize adherence. Interventions aimed at supporting long-term adherence must address experienced conflicts between 'health' and 'life'.
Comparison of psychiatric screening questionnaires for primary care patients
- R L Hough
- J A Landsverk
- J D Stone
- G R Jacobsen