Is the chronicity of HIV/AIDS fragile? Biomedicine, politics and sociability in an online social network

Abstract

<jats:p> Objective: to understand how the relationships between chronicity and politics shape sociability and mutual help among people living with HIV/AIDS. Method: This is a virtual ethnography in a closed group on Facebook. To collect the information, on-lineparticipant observation and documental analysis were utilized. 37 posts were analyzed using the softwareNVivo 12 Pro and the thematic coding technique. Results: Two thematic categories emerged: Do the treatment and time will take care of the rest: Mutual help and HIV/AIDS as a chronic condition; and Yes, there is danger around the corner, my dear: Politics, conflicts and sociability in the group. The most relevant aspect of this study concerns the evidence of the fragility of the discourse on the chronicity of HIV/AIDS. Conclusion: Through the analysis of sociability and mutual help produced among the members of the investigated group, it was possible to apprehend the ways in which, in their experiences on living with HIV/AIDS as a chronic condition, the relationships between health-disease, politics and time showed the dependence between chronicity and the State, and its impacts on daily life.</jats:p>

Social Interaction of Women Exposed to Hiv/Aids: A Representative Model

“…This is currently reflected in the drop in the percentages of vertical HIV transmission, in the low morbidity and mortality rates, and in the improvement of living conditions and longevity. Such factors contribute to the change in the stigma of "fatal disease" and to a modification in the profile of the population affected by this infection, indicating the current representation of chronicity of the disease [26][27] . This was pointed out by the interviewees in this research, and these characteristics of a chronic disease acquired by AIDS, due to ART, provided an ever-increasing approximation of AIDS in people's lives.…”

“…This was pointed out by the interviewees in this research, and these characteristics of a chronic disease acquired by AIDS, due to ART, provided an ever-increasing approximation of AIDS in people's lives. Before, people with the disease were seen as terminally ill; currently, in everyday life, they live as HIV positive [26][27] .…”

Online Ethnography for People With Chronic Conditions: Scoping Review

“…Our analysis showed that the majority (24/27, 88.9%) of the included studies were passive analyses [24][25][26][30][31][32][33][34][36][37][38][40][41][42][43][44]46,[48][49][50][51]53,54], 3.7% (1/27) were self-identified active analyses [45], and 7.4% (2/27) involved active analyses [35,39]. With regard to active analysis, Gibson et al [39] emphasized using participation-observation to complete data collection, and Frohlich [35] founded an online community and communicated with patients with inflammatory bowel disease.…”

“…Only 11.1% (3/27) of the articles did not mention any issues on ethics [26,45,50]. In general, there were 5 ethical issues in the included studies, which included public data [24,25,[30][31][32][33][35][36][37]40,41,44,46,48,51,53], informed consent [38][39][40]42,43,47,49,51], privacy and confidentiality [31,32,40,41,44,46,47], naming [24,31,[39][40][41]44,46,47,51,54], and legal consideration [24,25,[30][31][32][33]…”

“…Online forums and social media can be a user-friendly environment where individuals can normalize their illness, assert their voice and identity with each other by validating shared experience with peers, and form social ties with a broad audience [57]. HIV patients and youth with mental illness affected by COVID-19 were also discussed in our study [44,49]. COVID-19 possibly shifts from an acute to chronic disease and also causes political controversy [58][59][60], while HIV has long been recognized as a health and political challenge [60,61].…”