The role of online social networks in improving health literacy and medication adherence among people living with HIV/AIDS in Iran: Development of a conceptual model

Abstract

Online social networks have been used to enhance human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) prevention, diagnosis, and treatment programs worldwide. This study aimed to develop a conceptual model of using online social networks in improving health literacy and medication adherence among people living with HIV/AIDS in Iran. This mixed-method sequential exploratory study was conducted in three phases. Firstly, a series of semi-structured interviews with a purposive sample of 29 HIV-positive patients were conducted to investigate the perceptions and experiences of HIV-positive patients about using online social networks to support health literacy and medication adherence. Thematic analysis was used to analyse qualitative interviews, extract potential components, and design a conceptual model. Then, a Delphi study with 27 HIV-positive patients was subsequently conducted to examine the consensus of patients on the proposed model. Finally, the trustworthiness and credibility of the proposed model were reviewed and evaluated by expert panel members from epidemiology and public health. Seven themes and 24 sub-themes emerged from the qualitative interviews. Five themes encompassed components of online social networks that supported communication and information-seeking behaviour of people living with HIV/AIDS. The two other themes encompassed social support and health-related outcomes including medication adherence. The credibility of the proposed conceptual model was confirmed methodologically using the expert panel and Delphi technique. Our findings highlighted that using online social networks has empowered Iranian people living with HIV/AIDS, making them more connected, safe, and able to access HIV/AIDS-related information and services. The role of online social networks in improving health literacy and medication adherence was also demonstrated in a conceptual model to understand the supportive components of online social networks in the HIV care continuum as well as customized interventions to improve the success of antiretroviral therapies.

Impact of health literacy and social support on medication adherence in patients with hypertension: a cross-sectional community-based study

“…Adequate social support can be obtained from families, friends, peers, health care professionals and organizations, even from internet, which has been shown to improve medication adherence and the quality of patients' lives [ 32 – 34 ]. Herein, we found that that social support was directly associated with medication adherence, which is similar to the results from previous studies [ 9 – 11 ].…”

What may encourage or deter health services utilization by people living with or at the risk of HIV/AIDS in special health centers? Qualitative evidence from a stigmatized community

“…The number of men aged 15 and over living with HIV was estimated at 43,000 [23,000– 91,000], while that of women stood at 16,000 [8800–32,000] [ 3 , 4 ]. Injection drug use is considered the main cause of HIV transmission in Iran [ 5 ]. According to a previous study, there were about 230.000 people injecting drug in Iran in 2016 [ 6 ].…”

“…For this reason, female sex workers are considered the second most at risk population for HIV transmission [ 13 ]. As prostitution and sex work are illegal and extremely stigmatized in Iran [ 14 ], it has affected the process of diagnosis and treatment of HIV/AIDS adversely and consequently has posed major challenges to cope with it in Iran [ 5 , 15 ]. To encourage safe sexual behaviors and control spread of HIV/AIDS in this part of population, other centers so-called “Vulnerable Women’s Counseling Centers” were created separately to provide counseling services, and distribute preventive and protective services for female at the risk of getting HIV (women live with HIV/AIDS use their curative services from BDCCs).…”

“…Other indicators such as the rate of adherence to antiretroviral therapy (ART) which are crucial for successful HIV treatment shows that the situation is not promising. For example, the rate of ART regimens among Iranian people living with HIV/AIDS (PLWHA) is so as low as 20% and only 17% are ART adherent and virally suppressed [ 5 ].…”

“…Previous studies in Iran have addressed other aspects of health status of people living with HIV/AIDS such as antiretroviral therapy adherence and determining factors in general [ 5 , 31 ], their quality of life [ 32 – 34 ], factors affecting their survival [ 35 ] and late diagnosis [ 36 ], and etc. However, to the authors’ best knowledge, no study has still been carried out specifically on Behavioral Diseases Counseling Centers and Vulnerable Women’s Counseling Centers in Iran to reveal what may hinder or encourage people living with and at the risk of getting HIV/AIDS coming to these centers at the first step as they are the main peripheral centers that should attract people to take test, get their treatment, receive medications and other protective and preventive services, follow-up their health status, and adhere to treatment for the rest of their life.…”