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Mburu G.,International HIV AIDS Alliance | Mburu G.,Lancaster University | Hodgson I.,Trinity College Dublin | Kalibala S.,Population Council | And 5 more authors.
Journal of the International AIDS Society | Year: 2014

Introduction: As 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. Methods: In 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. Results: Our 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. Conclusions: There 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. © 2014 Mburu G et al; licensee International AIDS Society. Source

Lees S.,London School of Hygiene and Tropical Medicine | Kielmann K.,Queen Margaret University | Cataldo F.,Dignitas International | Gitau-Mburu D.,International HIV AIDS Alliance
Global Public Health | Year: 2012

In response to the human resource challenges facing African health systems, there is increasing involvement of informal care providers in HIV care. Through social and institutional interactions that occur in the delivery of HIV care, linkages between formal and informal systems of care often emerge. Based on a review of studies documenting the relationships between formal and informal HIV care in sub-Saharan Africa, we suggest that linkages can be conceptualised as either 'actor-oriented' or 'systems-oriented'. Studies adopting an actor-oriented focus examine hierarchical working relationships and communication practices among health systems actors, while studies focusing on systems-oriented linkages document the presence, absence or impact of formal inter-institutional partnership agreements. For linkages to be effective, the institutional frameworks within which linkages are formalised, as well as the ground-level interactions of those engaged in care, ought to be considered. However, to date, both actor- and system-oriented linkages appear to be poorly utilised by policy makers to improve HIV care. We suggest that linkages between formal and informal systems of care be considered across health systems, including governance, human resources, health information and service delivery in order to improve access to HIV services, enable knowledge transfer and strengthen health systems. © 2012 Copyright Taylor and Francis Group, LLC. Source

Cataldo F.,Dignitas International | Kielmann K.,Queen Margaret University | Kielmann T.,Independent Consultant | Mburu G.,International HIV AIDS Alliance | And 2 more authors.
BMC Health Services Research | Year: 2015

Background: Across Sub-Saharan Africa, the roll-out of antiretroviral treatment (ART) has contributed to shifting HIV care towards the management of a chronic health condition. While the balance of professional and lay tasks in HIV caregiving has been significantly altered due to changing skills requirements and task-shifting initiatives, little attention has been given to the effects of these changes on health workers' motivation and existing care relations. Methods: This paper draws on a cross-sectional, qualitative study that explored changes in home-based care (HBC) in the light of widespread ART rollout in the Lusaka and Kabwe districts of Zambia. Methods included observation of HBC daily activities, key informant interviews with programme staff from three local HBC organisations (n = 17) and ART clinic staff (n = 8), as well as in-depth interviews with home-based caregivers (n = 48) and HBC clients (n = 31). Results: Since the roll-out of ART, home-based caregivers spend less time on hands-on physical care and support in the household, and are increasingly involved in specialised tasks supporting their clients' access and adherence to ART. Despite their pride in gaining technical care skills, caregivers lament their lack of formal recognition through training, remuneration or mobility within the health system. Care relations within homes have also been altered as caregivers' newly acquired functions of monitoring their clients while on ART are met with some ambivalence. Caregivers are under pressure to meet clients and their families' demands, although they are no longer able to provide material support formerly associated with donor funding for HBC. Conclusions: As their responsibilities and working environments are rapidly evolving, caregivers' motivations are changing. It is essential to identify and address the growing tensions between an idealized rhetoric of altruistic volunteerism in home-based care, and the realities of lay worker deployment in HIV care interventions that not only shift tasks, but transform social and professional relations in ways that may profoundly influence caregivers' motivation and quality of care. © 2015 Cataldo et al.; licensee BioMed Central. Source

Tenthani L.,Ministry of Health | Tenthani L.,University of Bern | Tenthani L.,University of Washington | Haas A.D.,University of Bern | And 16 more authors.
AIDS | Year: 2014

OBJECTIVE:: To explore the levels and determinants of loss to follow-up (LTF) under universal lifelong antiretroviral therapy (ART) for pregnant and breastfeeding women ('Option B+') in Malawi. DESIGN, SETTING, AND PARTICIPANTS:: We examined retention in care, from the date of ART initiation up to 6 months, for women in the Option B+ program. We analysed nationwide facility-level data on women who started ART at 540 facilities (nS=S21S939), as well as individual-level data on patients who started ART at 19 large facilities (nS=S11S534). RESULTS:: Of the women who started ART under Option B+ (nS=S21S939), 17% appeared to be lost to follow-up 6 months after ART initiation. Most losses occurred in the first 3 months of therapy. Option B+ patients who started therapy during pregnancy were five times more likely than women who started ART in WHO stage 3/4 or with a CD4 cell count 350Scells/μl or less, to never return after their initial clinic visit [odds ratio (OR) 5.0, 95% confidence interval (CI) 4.2-6.1]. Option B+ patients who started therapy while breastfeeding were twice as likely to miss their first follow-up visit (OR 2.2, 95% CI 1.8-2.8). LTF was highest in pregnant Option B+ patients who began ART at large clinics on the day they were diagnosed with HIV. LTF varied considerably between facilities, ranging from 0 to 58%. CONCLUSION:: Decreasing LTF will improve the effectiveness of the Option B+ approach. Tailored interventions, like community or family-based models of care could improve its effectiveness. © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Source

Chan A.K.,Dignitas International | Chan A.K.,University of Toronto | Mateyu G.,Dignitas International | Jahn A.,Ministry of Health | And 6 more authors.
Tropical Medicine and International Health | Year: 2010

Objective To assess the effect of decentralization (DC) of antiretroviral therapy (ART) provision in a rural district of Malawi using an integrated primary care model. Methods Between October 2004 and December 2008, 8093 patients (63% women) were registered for ART. Of these, 3440 (43%) were decentralized to health centres for follow-up ART care. We applied multivariate regression analysis that adjusted for sex, age, clinical stage at initiation, type of regimen, presence of side effects because of ART, and duration of treatment and follow-up at site of analysis. Results Patients managed at health centres had lower mortality [adjusted OR 0.19 (95% C.I. 0.15-0.25)] and lower loss to follow-up (defaulted from treatment) [adjusted OR 0.48 (95% C.I. 0.40-0.58)]. During the first 10 months of follow-up, those decentralized to health centres were approximately 60% less likely to default than those not decentralized; and after 10 months of follow-up, 40% less likely to default. DC was significantly associated with a reduced risk of death from 0 to 25 months of follow-up. The lower mortality may be explained by the selection of stable patients for DC, and the mentorship and supportive supervision of lower cadre health workers to identify and refer complicated cases. Conclusion Decentralization of follow-up ART care to rural health facilities, using an integrated primary care model, appears a safe and effective way to rapidly scale-up ART and improves both geographical equity in access to HIV-related services and adherence to ART. © 2010 Blackwell Publishing Ltd. Source

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