Empathic response and no need for perfection: reflections on harm reduction engagement in South Africa

Abstract

The importance of community involvement in public health research processes is well established. The literature is, however, less forthcoming about processes of community inclusion in public health project implementation, especially when it comes to projects focusing on key populations. The Step Up Project is the first multi-city harm reduction service provision project for people who inject drugs in South Africa. Since inception, the Project has made concerted efforts to work with and alongside people who actively identify as people who inject drugs. This paper outlines two features in relation to project-beneficiary dynamics that emerged in a qualitative project evaluation conducted by an external researcher and a funder representative. The first was that people accessing the project comfortably expressed criticisms of both themselves and the project, and noted when their behaviour contradicted project ideals. The second was the extent to which engagement with the project was reported to be fostering a renewed sense of personhood and right to exist in the world. These findings are, we suggest, in principle related to two forms of community engagement: consistent empathic response and community advisory groups. This implies that programmes need to focus on their mode of approach as much as on the content of their approach. It further implies that programme impact not be limited to quantitative assessment measures.

Keywords:

• People who inject drugs
• community advisory groups
• empathic response
• South Africa

Acknowledgements

We are immensely grateful to all the implementing teams and service users who shared their knowledge and experiences with us. Our thanks, too, to the management at TB HIV Care and especially Andrea Schneider, Nelson Mendeiros, Kalvanya Padayachee and Rudolph Basson for their work in running the Step Up Project and supporting the evaluation process. We further thank Mainline and the Centres for Disease Control and Prevention for their support for TB HIV Care programmes with key populations.

Notes

1. These UNAIDS goals are as follows,

By 2020, 90% of all people living with HIV will know their HIV status. By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy. By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression. (UNAIDS, 2014)

2. The South African National Strategic Plan on HIV, TB and STIs (2017–2022) includes sex workers, men who have sex with men, transgender people, people who use drugs and inmates as key populations for HIV and STIs" (South African National AIDS Council, 2017).

3. www.tbhivcare.org.

4. See www.out.org.za.

5. We delineate racial categories with the full awareness that these are constructed and contested.

6. This emerged as a critique of the project during the evaluation. It was likely due to the fact that white people living in poverty and inhabiting the city centre are quickly recognised (or cast) as people who use drugs. The early stages of the project therefore found white people who use drugs and drew on their networks to build CAGs and to find other potential participants.

7. This was dealt with subsequent to the evaluation.

8. The International Network of People Who Use Drugs has, however, recently published a practical guide for implementing HIV and hepatitis C interventions with people who use drugs, see http://www.inpud.net/en/iduit-implementing-comprehensive-hiv-and-hcv-programmes-people-who-inject-drugs.

9. The role played by reimbursements was not entirely positive. Funding limitations dictated that a limited number of participants (usually between 50 and 60 participants) could be reimbursed per meeting. This resulted in a degree of competition and gatekeeping.