Table 4 A summary of reported benefits and burdens for volunteers and other stakeholders in the malaria HIS
Area | HIS volunteers: benefits/aspects of participation valued | HIS volunteers: burdens/aspects of participation seen as problematic | Spread of individual benefits/burdens to community, research staff and institution |
|---|---|---|---|
Preparation and travel to study site for residency | None described | Tiredness and anxiety associated with long distance travelled, perceptions of safety (political situation) and of inadequate time to prepare for travel to take up residence | Loss of trust and reputational damage to institution, particularly in relation to political tensions |
Access to a health check | Physical and psychological benefits • Health check valued particularly if found to be ‘normal’ • Potential benefit from detection of underlying health problems and referral for care | The possibility of ‘failing’ a health check caused anxiety related to loss of opportunity to participate (and benefit from compensation) and risks of stigma, where latter widely seen as linked to HIV status | Rumours/stigma related to perceptions that people who are excluded from the malaria HIS on the health test are HIV positive |
The malaria challenge and follow-up ‘clinical’ processes | None described | Physical and psychological burdens: • Pain and discomfort caused by intravenous injection of malaria sporozoites and later blood sampling • Anxiety (sometimes severe) about risks involved in short and longer term, linked to issue of trust in research and researchers (generally but not always temporary) | Issues of trust around researchers’ intentions and short- and long-term effects of research procedures can spread to community as rumours (positive or negative); negative attitudes towards research staff (including field workers who are based in the community); potential institutional reputational damage; and impact on other studies |
Compensation | Social and economic benefits Compensation highly valued and in practice generally used in ways that promoted individual or family wellbeing in the long term, often in modest ways. | Social and psychological burdens • Anxiety (sometimes severe) about minimisation of compensation in the event of early study exit • Family conflicts over decision to join study (to gain compensation) • Family conflicts over the way compensation should be used, with gendered dimension | Conflicts in families are likely to generate issues within the wider community, potentially leading to community conflict, community-researcher trust issues and risks to institutional reputation and other studies. |
Residential experience | Social and psychological benefits • Facilities enjoyed as ‘paid for vacation’ • New friendships valued, sometimes long lasting • Other opportunities for learning during residency valued e.g. tour of labs | Social and psychological burdens: • Families missed and worried about, particularly in relation to their economic and health status while volunteer away, particularly if had role as main ‘breadwinner’ • Offence to other residents and family/community conflict caused through development of relationships seen as ‘inappropriate’ • Boredom and frustration experienced | |
Being forced to use contraceptives | None reported | Psychological burdens for women volunteers — disliked as ‘not normal’ practice, fears about safety and concerns about being forced to use | |
Opportunity to contribute to new vaccine development | A valued opportunity given the nature of malaria as a well-recognised and serious illness in local communities | As above, anxiety (sometimes severe) about risks involved in short and longer term, linked to issue of trust in research and researchers (generally but not always temporary) |