Background
Adolescents living with HIV (ALHIV) face many challenges with adherence to antiretroviral therapy (ART) and retention in HIV health services. Given increasing access to and use of mobile phone technology in Nigeria, digital strategies have potential to support ALHIV and help meet informational and social support needs that could contribute to improved health outcomes. We designed a structured support group intervention, SMART (Social Media to promote Adherence and Retention in Treatment) Connections, to be delivered online to improve retention in HIV services and ART adherence among ALHIV ages 15-19 years enrolled in ART services. The aim of the study was to examine the feasibility and acceptability of the intervention to inform an outcome study of the intervention.
Methods
We held workshops with ALHIV in Akwa Ibom State to identify their preferred digital platform and to inform the adaptation of the evidence-informed “Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV” guide. We then trained facilitators on the adapted support group intervention. We enrolled male and female ALHIV, ages 15 to 19 years, into the study and into 5 “secret” Facebook groups and implemented the intervention. Each participant received a basic phone with Internet capability and credit for data to facilitate access to the intervention. We conducted baseline and endline structured interviews with ALHIV, and collected medical record data and Facebook engagement data. We also conducted in-depth interviews (IDI) at endline with 16 ALHIV and all 4 facilitators. This study was reviewed and approved by FHI 360’s Protection of Human Subjects Committee and the University of Uyo Teaching Hospital Institutional Health Research Ethics Committee.
Key findings
In total, 41 adolescents enrolled in the study, and 38 initiated the intervention. Endline data were collected on 36 participants: 35 completed an endline structured interview and a subset of 16 completed an IDI at endline (8 high-engaging participants and 8 low-engaging participants); one participant completed an IDI, but did not complete an endline structured interview.
• Feasibility
o 94% who completed an endline questionnaire felt that accessing the intervention on Facebook through their study phone was somewhat or very easy.
o Participation (measured as the number of Facebook posts and comments) varied widely by group, but most ALHIV participated in most sessions. Almost all said they read what the facilitator posted and read comments posted by others.
o Overall, facilitators completed most scheduled activities on-time and as intended. They felt that using Facebook on phones was easy. Some facilitators participated more actively than others in responding to participants’ comments.
▪ There were some challenges with a few specific activities (i.e. uploading adherence plan photos and posting quizzes).
o Study recruitment was slower than anticipated with difficulty reaching ALHIV through health facilities and some younger ALHIV (i.e. 15 to 17-year-olds) ineligible because their parents had not disclosed their HIV status to them yet.
• Acceptability
o All participants said they would recommend the intervention to other ALHIV.
o All agreed the intervention was useful, enjoyed taking part in it, felt comfortable with the facilitator and group members, and wanted to continue the intervention.
o Facilitators and ALHIV were strongly supportive and liked the intervention. In IDIs, ALHIV most commonly reported liking it because they felt it was educational/informative, enjoyed sharing experiences with other ALHIV, and felt it encouraged and supported them to take care of themselves.
▪ “I am a very timid and shy person. But the intervention helped me. There are certain things I was able to overcome. I felt so miserable when I found out that I’m positive but after interacting with people, I find out that I don’t have to kill myself or die or feel miserable …So I have decided to open up and feel good about myself.” - 18-year-old female
o The majority of ALHIV interviewed for the IDIs said they would prefer an online-only support group as compared to an in-person only or combined in-person and online group, because they could access information and respond remotely at any time, and because there are no travel-related costs or logistical barriers such as with an in-person support group.
Conclusion
We found this online support group intervention delivered through “secret” Facebook groups to be feasible and highly acceptable; however, implementation was not without challenges. Facilitators were largely able to deliver the intervention as designed, and participants, overall, engaged routinely.
Next steps
We have adapted the SMART Connections intervention based on findings from this feasibility study and are now launching a randomized controlled trial (RCT) to examine if the intervention leads to improved retention in HIV services among youth (ages 15-21) living with HIV. The RCT will be conducted at 11 facilities in Akwa Ibom and Cross River states in Southern Nigeria and enroll 500 participants. The intervention has been expanded to include 10 sessions from the original Positive Connections Curriculum and will be delivered over approximately 4 months. The study will take approximately 18 months to complete.
Download:
Nigeria SMART Connections YPA feasibility study Brief.pdf (729.88 KB)