Exploring social harms during distribution of HIV self‐testing kits using mixed‐methods approaches in Malawi

Abstract

Introduction HIV self‐testing (HIVST) provides couples and individuals with a discreet, convenient and empowering testing option. As with all HIV testing, potential harms must be anticipated and mitigated to optimize individual and public health benefits. Here, we describe social harms (SHs) reported during HIVST implementation in Malawi, and propose a framework for grading and responding to harms, according to their severity. Methods We report findings from six HIVST implementation studies in Malawi (2011 to 2017) that included substudies investigating SH reports. Qualitative methods included focus group discussions, in‐depth interviews and critical incident interviews. Earlier studies used intensive quantitative methods (post‐test questionnaires for intimate partner violence, household surveys, investigation of all deaths in HIVST communities). Later studies used post‐marketing reporting with/without community engagement. Pharmacovigilance methodology (whereby potentially life‐threatening/changing events are defined as “serious”) was used to grade SH severity, assuming more complete passive reporting for serious events. Results During distribution of 175,683 HIVST kits, predominantly under passive SH reporting, 25 serious SHs were reported from 19 (0.011%) self‐testers, including 15 partners in eight couples with newly identified HIV discordancy, and one perinatally infected adolescent. There were no deaths or suicides. Marriage break‐up was the most commonly reported serious SH (sixteen individuals; eight couples), particularly among serodiscordant couples. Among new concordant HIV‐positive couples, blame and frustration was common but rarely (one episode) led to serious SHs. Among concordant HIV‐negative couples, increased trust and stronger relationships were reported. Coercion to test or disclose was generally considered “well‐intentioned” within established couples. Women felt empowered and were assertive when offering HIVST test kits to their partners. Some women who persuaded their partner to test, however, did report SHs, including verbal or physical abuse and economic hardship. Conclusions After more than six years of large‐scale HIVST implementation and in‐depth investigation of SHs in Malawi, we identified approximately one serious reported SH per 10,000 HIVST kits distributed, predominantly break‐up of married serodiscordant couples. Both “active” and “passive” reporting systems identified serious SH events, although with more complete capture by “active” systems. As HIVST is scaled‐up, efforts to support and further optimize community‐led SH monitoring should be prioritized alongside HIVST distribution.

Community‐led HIV testing services including HIV self‐testing and assisted partner notification services in Vietnam: lessons from a pilot study in a concentrated epidemic setting

“…No other social harm such as self‐harm, suicide or intimate partner violence was identified or reported during the 17‐month study period. This is consistent with other studies on lay provider testing, self‐testing, and aPN, showing that such events are rare . Despite these encouraging findings, it is critical that programmes sensitize communities, health workers, and prepare and train peer educators to provide the necessary support and messages, as well as tools to monitor and report on social harm.…”

To thine own test be true: HIV self‐testing and the global reach for the undiagnosed

“…Overall, they report 25 serious adverse events through the active reporting systems from all six studies with a total of 178,833 self‐tests distributed. The most common event was marriage breakdown in serodiscordant relationships though verbal abuse, and physical and economic intimate partner violence were infrequently also observed . The potential for social harms is not unique to HIVST, but the present work elucidates the need for intimate partner violence screening when considering HIVST secondary distribution and partner testing, and the need for ongoing monitoring of social harms within existing systems.…”

“…In this Supplement , Kumwenda et al . provide new evidence on social harms from projects in Malawi, summarizing data from six HIVST projects from 2011 to 2017 where a combination of qualitative and quantitative methods were used . Coercion was reframed to have both negative and positive aspects, and the concept of compassionate coercion was introduced to describe instances when family members encourage a member who is ill to test.…”

HIV self‐testing: breaking the barriers to uptake of testing among men and adolescents in sub‐Saharan Africa, experiences from STAR demonstration projects in Malawi, Zambia and Zimbabwe

“…Introducing the option of HIVST greatly increased the numbers of clients who could be served each day at rural and urban outreach services and consequently increased the number of positive cases identified per counsellor and per site at any given time . A further low‐cost facility‐based model (“secondary distribution”), where HIVST kits can be delivered to partners by antenatal clinic attendees and newly diagnosed PLHIV is being scaled‐up under STAR in Malawi and Zimbabwe and is discussed further in the accompanying manuscript relating to social harms in this issue .…”