IntroductionAs adolescents living with HIV gain autonomy over their self-care and begin to engage in sexual relationships, their experiences of being informed about their HIV status and of telling others about their HIV status may affect their ability to cope with having the disease.MethodsIn 2010, we conducted a qualitative study among adolescents aged 10–19 living with HIV in Zambia, and with their parents and health care providers. Through interviews and focus group discussions, we explored the disclosure of HIV status to adolescents living with HIV; adolescents’ disclosure of their status to others; and the impact of both forms of disclosure on adolescents.ResultsOur study identified three main barriers to disclosure of HIV status: local norms that deter parents from communicating with their children about sexuality; fear of HIV stigma; and an underlying presumption that adolescents would not understand the consequences of a HIV diagnosis on their lives and relationships. With regard to adolescents’ disclosure of their HIV status to their sexual partners, our study identified fear of rejection as a common barrier. In rare cases, open family conversations about HIV helped adolescents come to terms with a HIV diagnosis. Findings indicated that disclosure had various outcomes at the individual and interpersonal levels. At the individual level, some adolescents described being anxious, depressed and blaming themselves after being told they had HIV. At the interpersonal level, disclosure created opportunities for adolescents to access adherence support and other forms of psychosocial support from family members and peers. At the same time, it occasionally strained adolescents’ sexual relationships, although it did not always lead to rejection.ConclusionsThere is a need for public health interventions that guide adolescents living with HIV, their parents and families through the disclosure process. Such interventions should help parents to assess and understand the evolving cognitive capacity and maturity of their adolescents in order to determine the appropriate time to inform them of their HIV-positive status. Such interventions should also mitigate the risk of HIV stigma, as well as local norms that may prevent discussions of sexuality within families. Adolescents who have been informed of their HIV status should be provided with on-going support to prevent disclosure from negatively affecting their psychological and sexual wellbeing. Further research is needed to explore the potential role of trusted family members in contributing to the disclosure process.
Facility- and community-based peer support interventions can benefit maternal uptake and retention in Option B+.
Introduction Malawi has embarked on a ‘test-and-treat’ approach to prevent mother-to-child transmission of HIV (PMTCT), known as ‘Option B+’, offering all HIV-infected pregnant and breastfeeding women lifelong antiretroviral treatment (ART) regardless of CD4-count or clinical stage. We conducted a cross-sectional qualitative study to explore early experiences surrounding ‘Option B+’ for patients and health care workers (HCWs) in Malawi. Methods Study participants were purposively selected across six health facilities in three regional health zones in Malawi. Semi-structured interviews were conducted with women enrolled in ‘Option B+’ (N=24) and focus group discussions were conducted with HCWs providing Option B+ services (N=6 groups of 8 HCWs). Data were analysed using a qualitative thematic coding framework. Results Patients and HCWs identified the lack of male involvement as a barrier to retention in care, and expressed concerns at the rapidity of the test-and-treat process, which makes it difficult for patients to ‘digest’ a positive diagnosis before starting ART. Fear regarding the breach of privacy and confidentiality were also identified as contributing to loss-to-follow-up of women initated under the Option B+. Disclosure remains a difficult process within families and couples. Lifelong ART was also perceived as an opportunity to plan future pregnancies. Conclusions As ‘Option B+’ continues to be rolled out, novel interventions to support and retain women into care must be implemented. These include providing space, time and support to accept a diagnosis before starting ART, engaging partners and families, and addressing the need for peer-support and confidentiality.
Home-based care (HBC) programmes in low- and middle-income countries have evolved over the course of the past two decades in response to the HIV epidemic and wider availability of antiretroviral therapy (ART). Evidence is emerging from small-scale and well-resourced studies that ART delivery can be effectively incorporated within HBC programmes. However, before this approach can be expanded, it is necessary to consider the lessons learned from implementing routine HBC programmes and to assess what conditions are required for their roll-out in the context of ART provision. In this paper, we review the literature on existing HBC programmes and consider the arguments for their expansion in the context of scaling up ART delivery. We develop a framework that draws on the underlying rationale for HBC and incorporates lessons learned from community health worker programmes. We then apply this framework to assess whether the necessary conditions are in place to effectively scale up HBC programmes in the ART era. We show that the most effective HBC programmes incorporate ongoing support, training and remuneration for their workers; are integrated into existing health systems; and involve local communities from the outset in programme planning and delivery. Although considerable commitment has so far been demonstrated to delivering comprehensive HBC programmes, their effectiveness is often hindered by weak linkages with other HIV services. Top-down donor policies and a lack of sustainable and consistent funding strategies represent a formidable threat to these programmes in the long term. The benefits of HBC programmes that incorporate ART care are unlikely to be replicated on a larger scale unless donors and policymakers address issues related to human resources, health service linkages and community preparedness. Innovative and sustainable funding policies are needed to support HBC programmes if they are to effectively complement national ART programmes in the long term.
The role of EMs within PMTCT programs continues to expand rapidly. There is a need for coordinated action to develop shared standards and principles commensurate with the new roles and additional demands placed on EMs to support PMTCT services, including EM certification, mentoring and supervision standards, standardized PMTCT-specific training curricula, and, where appropriate, agreed remuneration rates.
BackgroundIn mid-2016, Mozambique began phased implementation of the ‘Test-and-Treat’ policy, which enrolls HIV positive clients into antiretroviral treatment (ART) immediately regardless of CD4 cell count or disease stage. Novel insights into barriers and facilitators to ART initiation among healthy clients are needed to improve implementation of Test and Treat.Methods and findingsA cross-sectional qualitative study was conducted across 10 health facilities in Mozambique. In-depth interviews (IDIs) were conducted with HIV-positive clients (60 who initiated/20 who did not initiate ART within Test and Treat) and 9 focus group discussion (FGDs) were conducted with health care workers (HCWs; n = 53). Data were analyzed using deductive and inductive analysis strategies. Barriers to ART initiation included: (1) feeling ‘healthy’; (2) not prepared to start ART for life; (3) concerns about ART side effects; (4) fear of HIV disclosure and discrimination; (5) poor interactions with HCWs; (6) limited privacy at health facilities; and (7) perceptions of long wait times. Facilitators included the motivation to stay healthy and to take care of dependents, as well as new models of ART services such as adaptation of counseling to clients’ specific needs, efficient patient flow, and integrated HIV/primary care services.ConclusionsART initiation may be difficult for healthy clients in the context of Test-and-Treat. Specific strategies to engage this population are needed. Strategies could include targeted support for clients, community sensitization on the benefits of early ART initiation, client-centered approaches to patient care, and improved efficiency through multi-month scripting and increased workforce.
BackgroundIn sub-Saharan Africa antiretroviral therapy (ART) is being decentralized from tertiary/secondary care facilities to primary care. The Lablite project supports effective decentralization in 3 countries. It began with a cross-sectional survey to describe HIV and ART services.Methods81 purposively sampled health facilities in Malawi, Uganda and Zimbabwe were surveyed.ResultsThe lowest level primary health centres comprised 16/20, 21/39 and 16/22 facilities included in Malawi, Uganda and Zimbabwe respectively. In Malawi and Uganda most primary health facilities had at least 1 medical assistant/clinical officer, with average 2.5 and 4 nurses/midwives for median catchment populations of 29,275 and 9,000 respectively. Primary health facilities in Zimbabwe were run by nurses/midwives, with average 6 for a median catchment population of 8,616. All primary health facilities provided HIV testing and counselling, 50/53 (94%) cotrimoxazole preventive therapy (CPT), 52/53 (98%) prevention of mother-to-child transmission of HIV (PMTCT) and 30/53 (57%) ART management (1/30 post ART-initiation follow-up only). All secondary and tertiary-level facilities provided HIV and ART services. In total, 58/81 had ART provision. Stock-outs during the 3 months prior to survey occurred across facility levels for HIV test-kits in 55%, 26% and 9% facilities in Malawi, Uganda and Zimbabwe respectively; for CPT in 58%, 32% and 9% and for PMTCT drugs in 26%, 10% and 0% of facilities (excluding facilities where patients were referred out for either drug). Across all countries, in facilities with ART stored on-site, adult ART stock-outs were reported in 3/44 (7%) facilities compared with 10/43 (23%) facility stock-outs of paediatric ART. Laboratory services at primary health facilities were limited: CD4 was used for ART initiation in 4/9, 5/6 and 13/14 in Malawi, Uganda and Zimbabwe respectively, but frequently only in selected patients. Routine viral load monitoring was not used; 6/58 (10%) facilities with ART provision accessed centralised viral loads for selected patients.ConclusionsAlthough coverage of HIV testing, PMTCT and cotrimoxazole prophylaxis was high in all countries, decentralization of ART services was variable and incomplete. Challenges of staffing and stock management were evident. Laboratory testing for toxicity and treatment effectiveness monitoring was not available in most primary level facilities.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6963-14-352) contains supplementary material, which is available to authorized users.
In the context of rolling out antiretroviral treatment programmes in resource-constrained settings, "expert patients" are hailed as an important step towards greater involvement of people living with HIV (PLHIV) in HIV care, and in addressing the human resources crisis. The rise of the "expert patient" in HIV care partly echoes the move towards greater patient agency and self-management that informs health services delivery in industrialised countries. However, the "expert patient" also represents a particular moment in the trajectory of PLHIVs' quest for greater access to treatment and health care. In this paper, we examine the unique evolution and 'instrumentalisation' of PLHIV in public health in relation to shifts in the epidemiology, interventions and socio-political response related to HIV since the 1980s. Synthesised broadly as "risk-based", "empowerment", "structural" and "activist" approaches, four key paradigms are identified that attribute different levels of citizenship for PLHIV, that is the motivation, agency and responsibility to act not only on their own interests, but also on behalf of collective interests in HIV prevention and care. We problematise the concept of the patient-citizen by drawing attention to the context-specificity of such notions as patient identity, capacity and rights as well as the structural realities of access to treatment, and broader engagement with the health system. We conclude by offering some thoughts on the applicability of 'expert patient' approaches across a broad range of settings.
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