Consent and community engagement in diverse research contexts: reviewing and developing research and practice

Consent and community engagement (CE) in health research are two aspects of a single concern—that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be an important component of consent processes. Engaging communities can also have intrinsic and instrumental value beyond consent; for example, as a means of showing respect and identifying appropriate ways of working respectfully. In this paper we critically examine how CE and consent processes are characterized, conducted, and evaluated in diverse health research contexts, and propose a preliminary research agenda to support future learning in these critical areas

Operational evaluation of a service for prevention of mother-to-child transmission of HIV in rural Uganda: barriers to uptake of single-dose nevirapine and the role of birth reporting.

SUMMARY OBJECTIVES: To determine factors associated with pregnant women being HIV positive, barriers to the uptake of single-dose nevirapine (sdNVP) for prevention of mother-to-child transmission (PMTCT) and feasibility and effectiveness of reporting HIV-exposed infants born in facilities with no PMTCT services so as to receive NVP. METHODS: From 2002 to 2007, a sdNVP PMTCT service was implemented in 53 rural villages of south-west Uganda. Twenty-five of them were HIV-surveillance study villages. The proportions of mothers testing positive and mother and newborns receiving and ingesting sdNVP and associated factors were determined. RESULTS: Women with incomplete primary or no education, aged 25-34 years or not living with their partners were at increased risk of being HIV infected. Seventy-seven percentage of pregnant women with HIV (PWH) received therapy. Of the 63 PWH who received therapy and had surviving live births, only 39 (62%) reported births and received newborn prophylaxis within 72 h. Women were more likely to collect and ingest NVP if they were from study villages, preferred home administration of newborn NVP or presented at a more advanced stage of pregnancy. Newborns were more likely to be reported and receive NVP if mothers were aged 25-34 years, on antiretroviral therapy (ART) or came from study villages. CONCLUSIONS: The uptake of PMTCT services was unacceptably low. Asking PWH with less advanced pregnancies to return to collect NVP leads to missed opportunities especially if PWH are less educated. Birth reporting enabled the programme to provide NVP to some infants who otherwise would have missed. Antenatal, delivery and PMTCT services should be integrated

Retrospective review of task-shifting community-based programs supporting ARV treatment and retention in Uganda

The purpose of this study was to examine examples of task-shifting programs in Uganda with the aim of generating data that could inform the development of task-shifting policies, guidelines, and practices. The overall purpose of the study was to contribute to the growing knowledge base about task-shifting by describing the service delivery approaches of three purposively selected major AIDS service organizations (ASOs) in Uganda that have adopted task-shifting. The study showed that in the three ASOs, almost all key tasks in antiretroviral therapy (ART), including determining eligibility, initiating ART, and dispensing antiretrovirals, can be feasibly shifted to lower-level cadres or facilities. It also identified training gaps in specific areas of competence among professional health workers and lay health workers currently providing ART in task-shifted services. Findings from this study provide important insight on costs and outcomes associated with task-shifting in facility-based versus outreach/community-based service environments. The report concludes with a number of recommendations based on these findings