Role of the Internet in Care Initiation by People Living With HIV

Abstract

Over the past 20 years, people increasingly use the Internet to obtain information, including information about health. Yet, we lack understanding of how people living with HIV (PLHIV) use the Internet in their care and treatment decisions. Interviews with 23 individuals who initiated HIV care at an urban, Midwestern medical center were analyzed to explore how they used the Internet during the process of initiating HIV care. The time frame of initiation of HIV care ranged from less than one month to a delay of three years post-diagnosis. Qualitative content analysis was conducted and revealed that the participants discussed the Internet as a source of information about their diagnosis that influenced their care and treatment decisions. Five predominate themes emerged: 1) The Internet Alerted me to the Possibility of HIV, 2) The Internet Showed me a Solution is Available, 3) The Internet Influenced my Decisions about Care, 4) The Internet Empowered me to Participate in my Treatment Decisions, and 5) The Internet Gave me Hope for my Future. The results suggest that the Internet has the potential to provide information that can profoundly influence PLHIVs acceptance of care and treatment decisions. Clinicians face a new reality in which patients use Internet resources to obtain information and shape opinions about HIV treatment and care initiation decision-making. Guiding PLHIV in their selection of online resources needs to be adopted as one approach to educating and empowering individuals as they cope with their diagnosis and contemplate decisions regarding HIV care and treatment.

Health literacy of people living with HIV in a rural area in Indonesia: A cross‐sectional study

“…The issue of low adherence (Sianturi, Perwitasari, Islam, & Taxis, 2019) The latest report shows that over 93% of Indonesians were literate (Indonesia S, 2013), and internet users (Asosiasi Penyelenggara Jasa Internet Indonesia, 2017). Studies have shown that PLHIV use the internet to obtain information to make health decisions (Perazzo, Haas, Webel, & Voss, 2017) and as support to deal with depressive symptoms of being infected with HIV (van Luenen, Garnefski, Spinhoven, & Kraaij, 2018). Previous studies showed that health literacy was associated with sociodemographic variables such as gender, age, level of education, and race (Waite, Paasche-Orlow, Rintamaki, Davis, & Wolf, 2008).…”

Vivências de jovens em terapia antirretroviral para o HIV: estudo fenomenológico

“…Os jovens se mostram curiosos com relação ao seu tratamento e, desse modo, eles se ocupam, buscam informações, explicações e conselhos com relação à TARV, informando-se sobre o mesmo. Uma das possibilidades de busca por informações é o uso da internet, a qual tem o potencial de formar opiniões, auxiliando nas decisões acerca do tratamento das pessoas vivendo com HIV (30).…”

“I’m Gonna Get Busy Living”: Examining the Trajectories of Affect, Behavioral Health, and Psychological Resilience Among Persons Living With HIV in a Southeastern U.S. Health District

“…The mixed emotional response reported by the majority of our sample of PLWH at the time of diagnosis is supported by theory demonstrating the coincidence of positive and negative emotions during crises (Folkman & Moskowitz, 2000) yet contrasts with some of the findings of previous qualitative studies. Qualitative literature on HIV is saturated with narratives of PLWH describing the trauma of HIV-diagnosis (Perazzo, 2015; Psaros et al, 2015). Fear, dread, shame, and guilt are emotions often recalled by PLWH when asked to describe their feelings around this pivotal event in their lives (Perazzo, 2015; Psaros et al, 2015).…”

“…Qualitative literature on HIV is saturated with narratives of PLWH describing the trauma of HIV-diagnosis (Perazzo, 2015; Psaros et al, 2015). Fear, dread, shame, and guilt are emotions often recalled by PLWH when asked to describe their feelings around this pivotal event in their lives (Perazzo, 2015; Psaros et al, 2015). Although a negative reaction to receiving this sort of news is expected and was also found among most participants in the present study, we found that other people can experience a range of emotions with varying intensity.…”