Program of social support people living with HIV “Spotlight”
Janssen Russia, Pharmaceutical Companies of Johnson & Johnson, in partnership with the Social Partnership Development Fund
The project aims at improvement of quality of life of PLWH and development of the healthcare system potential by improving availability and quality of medical care for patients through development of socially useful public services. Despite the expanded coverage of treatment, there is a short of additional services that would allow to develop treatment persistent; and therefore, it doesn’t radically reduce the rate of disease and mortality. To achieve the 90-90-90 goals, it is essential to ensure the early start of therapy and aid in social adaptation. Thus, it is important to provide patients with socio-psychological services that are crucial for treatment efficacy and HIV prevention.
The program includes a number of socio-psychological services such as face-to-face consulting (consultations by a medical specialist on non-medical aspects of treatment; non-medical consulting: peer counselling, social support, psychological counselling), remote consulting (“Hotline” by phone, consulting via Internet) that was especially relevant during self-isolation period and group classes with clients (school of patients, peer support group). Within the program, medical care itself is not delivered. The project includes a service component for patients, as well as resource, information, and methodological support for the development of local NGOs. For local NGOs, the program provides an opportunity to leverage existing potential, develop skills and develop long-term strategic partnerships. In addition to providing demanded services to patients, engaging and improving the skills of representatives of regional NCOs, health and social workers are also directly involved in the project – they participate in seminars to learn additional skills on non-medical patient management. The monitoring system is one of the key program management components, which is represented by a tool set – a list of indicators, target values, accountability and reporting forms, and a procedure for their submission. Monitoring data on the program quantitative indicators are submitted on a monthly basis. The monitoring system provides for a transfer of impersonalized statistical information only. The PAG team coordinates the project on Janssen's behalf. Staff in most functions, from ethics and compliance to communications, are involved in regular monitoring of the project.
More than 5,000 patients have been covered and around 30,000 services have been provided since 2018. The results of the program evaluation demonstrated that more than 90% of respondents have a positive impact of the program on their lives. 76% of participants reported that they were able to get answers to important questions. According to 41% of patients, the project helped them better understand the advice, recommendations, and requirements of specialists. A significant rate of the program participants improved their attitude toward the specialists at the AIDS Centers (26%) and their trust in them (29%). 28% of respondents noted an increased adherence to treatment and check-ups, readiness to follow the advice, recommendations, and requirements of specialists accurately. Slightly less than a third of respondents (31%) believe that their well-being has improved as a result of participation in the program. All of results have contributed to the 90-90-90 goals and SDG 3 implementation.
The main enabling factor is the program methodology based on principles of social work and multi-professional client-centered approach. The second factor is program’s focus not only on patients, but on counselors as well. It includes seminars and trainings and has a positive impact on both the motivation of specialists and effectiveness of the program. This focus makes the program sustainable, since even if there is no funding, the specialist will be able to implement the practice with obtained expertise. The barriers include the lack of funding and multidisciplinary teams of specialists, meanwhile the team can be assembled by NGOs efforts.
The model of adherence development introduced during the program has demonstrated its vitality. Involved specialists notice that such multidisciplinary approach should be used in AIDS centers on a regular basis. The program highlighted importance of peer consulting with participation of HIV patients who are well prepared and ready to work systematically in close collaboration with AIDS centers. It’s vital to introduce peer consultants in patients’ management across regions to improve adherence and build trust-based dialogue. Specialists notice, the program helps to cover patients who avoid visiting AIDS centers. Healthcare workers believe, this project helps their patients to achieve virus reduction. NGO staff think, the program allows to support and develop constructive interaction with AIDS centers, helping to expand treatment coverage for patients in need of therapy. Program could be replicated using above-mentioned methodology in other territories with committed financial support.
COVID-19 made it impossible to launch the program on time, but it was reshaped quickly to the remote format. Due to the quarantine restrictions, there were not provided face-to-face services in the beginning of 2020. Even though not all the services included were at the same level of demand as before, the enrollment was still fulfilled. After restrictions were lifted, work of patient schools was resumed. Due to the social distancing requirements groups couldn’t be filled completely so the number of visitors decreased. Peer support groups couldn’t be held at full capacity as well. Meanwhile patients themselves were not eager to attend public events out of concern for possible infecting. Anyway, the program proved its versatility during the pandemic, as it had comprehensive set of services.
SDGS & Targets
Deliverables & Timeline
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Beneficiaries are HIV+ people with the focus on socially vulnerable groups (women, including pregnant and those planning for pregnancy, teenagers 12+, and other groups of patients at the discretion of regional partners); their partners and relatives; doctors and medical staff of AIDS Centers. The project is implemented in partnership with NGO “Social Partnership Development Fund” and performed by regional partners (local AIDS-centers and NGOs).