Insights into Re-engagement in Johannesburg's HIV Programme

Understanding re-engagement in Johannesburg s HIV programme: An analysis of clients re-initiating ART M.Bisnauth, F. Buthelezi, C. Chinyandura, A. Jiyane, N. Makina & K.Rees 20 April 2022

Background Disengagement and re-engagement are increasingly recognised as a normal part of lifelong antiretroviral therapy (ART). Anova supports Johannesburg Health District s Welcome Back Campaign (WBC) activities, encouraging re-engagement. The WBC evaluation aims to understand why clients interrupted treatment to care, why clients return back to care, and what helps clients remain in care through the following methods: a) b) Quantitative survey data were collected as part of the re-initiation process and entered into REDCap. c) Qualitative focus group discussions (FGDs) about adverts were conducted with re-engaging clients. Lay counsellors supported clients reinitiating ART in Johannesburg.

Client Re-initiation forms Captured 927 forms in total (Aug-Dec 2021) CoJ: 377 forms- Region A, E, F, G 62% women 119 (36%) of clients interrupted ART more than 12 months 27% of clients interrupted ART 3 months or less

Why did clients disengage? vs. Why do clients re-engage? CoJ 47% 200 50% CoJ 180 45% 160 40% 140 0.35 31% 140 35% 120 0.3 120 30% 100 0.25 23% 21% 100 25% 80 0.2 19% 177 80 20% 17% 60 0.15 12% 13% 60 15% 40 0.1 5% 8% 88 40 10% 81 20 0.05 20 117 72 63 49 32 45 20 5% 0 0 0 0% Mobility Distance Time off work Change employment Tired of treatment Worried about being off ART Easier Sick Tracing Concern for children Mobility/relocation (31%) top reason in CoJ and across all districts Followed by distance to the clinic was too far (19%) and difficulty getting time off work (17%) Worried about being off ART (47%) top reason provided Followed by access to services becoming easier (21%), and feeling sick (23%).

What did clients request to support adherence? No single intervention was requested by more than 28% of people A mix of interventions are needed to support adherence for different people CoJ- 425 forms 120 30% 28% 26% 100 25% 24% 80 20% 60 15% 107 13% 98 91 40 10% 8% 48 20 5% 29 0 0% Counselling/ groups SMS reminders Check in calls Shorter queues Food support

Adverts Heard/seen adverts encouraging return to care COJ: 60% radio Sedibeng: 41% radio COCT: 54% radio 33% 27% 26% Overall, 33% of re-initiating clients had heard/ seen adverts encouraging return to care CoJ seemed to have best reach of radio adverts 93% of people who had seen the adverts said they had been encouraged to return CoJ Sedibeng CoCT

11 FGDs have been conducted with 44 participants across 4 sub-districts of CoJ were conducted Duration of FGDs were 30-55 minutes Facility Name CoJ Sub-District Number of Participants in FGD Alex CHC JHB Reg E 4 Riverpark Clinic JHB Reg E 6 Eastbank Clinic JHB Reg E 2 Hillbrow Clinic JHB Reg F 6 Jeppe Clinic JHB Reg F 3 Esselen Clinic JHB Reg F 4 Hikhensile Clinic JHB Reg A 3 Thuthukani Clinic JHB Reg A 3 OR Tambo Clinic JHB Reg A 3 Diepsloot Clinic JHB Reg A 4 Lenasia Ext 5 Clinic JHB Reg G 4 TOTAL 11 4 44 Overall, participants in FGDs consisted of 64% female, predominantly between 36-45 years old (32%), had a secondary school education (67%) and were not employed (63%).

Principal Findings from FGDs Mobility, COVID-19 lockdown restrictions, transfer letters, and negative service provider attitudes were reported as the main reasons that clients interrupted treatment, difficult life circumstances made it challenging to plan ahead. [ ]with the kind of work that I do I travel a lot, I am a truck driver, so what happened is that I traveled to another province, and by the time I realised that I will be staying for long I went to the nearest clinic to look for the treatment, but they refused to give me because they said that I did not have a transfer letter [P2, Lenasia, JHB G]. Myself, I did not stop taking the treatment the time I was supposed to take them. I was home and it was during COVID- 19 and there was no transport coming to South Africa. So they said I must bring the bottle of the treatment that I am taking so that they can give me the emergency relief. I brought the container to them and they were able to do the refill form me, I went back again for the second time until I was able to come to South Africa [P6, Riverpark Clinic JHB E]. Disclosure to partner accompanied with counsellor and became too sick were reported as reasons clients returned to care. SMS reminders, faster queues, friendly staff, flexible hours of service were reported as reasons clients remain in care. [ ] the clinic they are good and welcoming, they can talk to people in a good manner, they give good advice about life, and they allow us to ask them questions if we do not understand [P2, Diepsloot Clinic, JHB A].

Adverts Influence: Your Time is Now, Your Health is in Your Hands Radio adverts were played across 18 stations Clients appreciated messaging focusing on multiple chronic diseases, found adverts to be educational emphasising the importance of taking ownership over their health, encouraged adherence and raised awareness during the pandemic. I must start now to look after myself, I must not look elsewhere but stand up now and take the treatment. If they call me at the clinic, I must come and if it s my date to attend the clinic. I must do so [P1, Hikhensile Clinic. JHB A]. It is encouraging to us who are taking treatment. It was difficult for us especially during COVID because you would get to a clinic. After they are done, they will test you for COVID, but at the end of the day you will end up asking yourself is it right for you to stop taking your treatment. Even [if] you didn t tell anyone, you see that its wrong to stop taking treatmentbecause at the end of the day you will leave your children behind [P6, Hillbrow Clinic, JHB F]. Some participants perceived a disconnect between the adverts positive message and their realities of service access barriers I like everything about the advert, now my question is that when I hear the advert would I be able to come to the facility for assistance because of the experience with clinics and hospitals in terms of attitude and all that, but the advert itself is good P1, Lenasia Ext 5, JHB G].

Recommendations and Conclusion: A Way Forward Disengagement from ART is driven by both shifting life circumstances and health systems barriers. Modifications to HIV services must support long-term retention and quicker reengagement. Focus areas should include more positive staff attitudes, greater client support/education and increased flexibility and efficiency. Service providers should not insist on transfer letters to provide care to clients returning after treatment interruption, but welcome them and acknowledge they have made a step all on their own to re-engage. Structural and organisational barriers remain with poor service provider attitudes. Monthly training and interactive sessions with staff should be conducted to increase their engagement. Differentiated service delivery (DSD) and multi-month dispensing (MMD) to relieve burden on the healthcare system and clients, includes external pick-up points for clients.

Acknowledgements This presentation is made possible by the generous support of the American people through the United States Agency for International Development (USAID). The contents are the responsibility of the Anova Health Institute and do not necessarily reflect the views of USAID or the United States Government. We would like to also thank Johannesburg Health District for their support and involvement in this research, all the participants, facility staff and management for allowing us to conduct this study and welcoming us.