The FHI 360 Youth Power Action ALHIV study is a study of an online support group intervention among adolescents and youths living with HIV in Nigeria aimed at assessing the feasibility and acceptability of an intervention designed to improve retention in HIV care services and improve anti-retroviral therapy (ART) adherence among adolescents and youths ages 15-24 years living with HIV enrolled in ART services. The Centre for Population and Reproductive Health was subcontracted in coordination with FHI 360 to coordinate the data collection aspect of the project using approved study instruments. Our major duties included:
- Coordination of study activities,
- Liaison with heads of selected health facilities in which the study recruitment and data collection will take place
- Recruitment of study participants per the approved protocol
- Conduct informed consent and assent with adolescents and their caregivers as required
- Conduct participant interviews using structured questionnaires at baseline and follow up
The project consists of two phases: a feasibility study and an outcome evaluation study.
Feasibility Study
URL: https://clinicaltrials.gov/ct2/show/study/NCT03076996
This was executed from April 2017-January 2018 in two selected local government areas in Akwa Ibom State. It was designed to examine how acceptable the intervention is to adolescents, the demand for the intervention, the practicality of implementing the intervention, as well as to identify any necessary changes to the intervention prior to outcome evaluation. It was also used as an opportunity to refine recruitment and data collection processes and to understand the feasibility and acceptability of recruiting adolescents and youth to enroll in the larger outcome evaluation study.
Following training of data collectors which took place between 10-15th May, 2017 in Uyo, Akwa Ibom State, Nigeria, recruitment of study participants commenced in June, 2017 at the University of Uyo Teaching Hospital (UUTH) and the General Hospital (GH) Ikot Ekpene. The Primary Health Centre Base was later included in the study. The first recruitment was on the 9th of June 2017.
A total of 41 participants were recruited into the study: 13 – UUTH, 4 – PHC Base, Uyo and 24 – GH Ikot Ekpene. A list of recruited participants is presented below segregated by health facility.
Results
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
- 94% who completed an endline questionnaire felt that accessing the intervention on Facebook through their study phone was somewhat or very easy.
- 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.
- 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).
- 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
- All participants said they would recommend the intervention to other ALHIV.
- 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.
- 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
- 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.
Outcome Study – Using social media to improve ART retention and treatment outcomes among youth living with HIV in Nigeria – The Youth SMART study
URL: https://clinicaltrials.gov/ct2/show/NCT03516318
http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT03516318
Currently ongoing, this is aimed at examining the effect of an online structured support group intervention (SMART Connections) designed to improve retention in HIV care services among youth ages 15-24 years living with HIV enrolled in ART services at SIDHAS-supported ART clinics located in eight local government areas in Cross River and Akwa Ibom States in Nigeria.
It is designed to be randomised controlled trial where youths enrolled in the study will be randomised into two groups: a control to receive standard care and another to receive standard care plus an online support group over a period of approximately 6 months.
Following the training of data collectors, participant recruitment is currently ongoing.
Over the years, CPRH has pioneered and provides leadership for acquisition of RH service and research skills and has been in the forefront of translation of research into practice aimed at improving the quality of maternal, newborn and child health in the country
CPRH has a good complement of consultants who are available to participate from the Departments of Obstetrics and Gynecology Health Promotion and Education, Epidemiology, Biostatistics and Demography, Community Medicine, Institute of Child and Adolescent Health Sociology, among others combined to provide a wealth of experience and expertise that will effectively execute the tasks detailed therein.