“If we lose it, we are worried”: Individual and provider level perceptions towards weight change among people living with HIV who undergo TB screening in routine health care settings in Gauteng Province, South Africa

Abstract

Background HIV weakens the immune system, increasing the risk of tuberculosis (TB) in people with living HIV (PLHIV). People living with HIV and on antiretroviral treatment (ART) often experience physical body size changes. Studies have found a significant discrepancy between PLHIV’s self-reported weight loss and their measured weight loss when being screened for TB using the WHO tool. To understand this inconsistency, a qualitative sub-study was conducted to explore perceptions and attitudes towards weight change among adults attending HIV care, as well as health care workers in public clinics in Gauteng, South Africa. Methods Our qualitative study was nested within the XPHACTOR study. A total of seven focus group discussions were conducted, five with adult participants attending for HIV care and two with health care workers and research staff in clinics around Gauteng. Inductive thematic analysis was used to analyse the data. Findings The majority of PLHIV preferred to gain weight due to fear of stigma associated with weight loss. Weight loss is associated with HIV/AIDS, suggesting that people attending HIV care may underreport weight loss in the context of a TB symptoms screening tool because they fear stigma. Participants reported that weight changes impacted their daily lives and had psychological effects on them. Some PLHIV described lipodystrophy as disproportional weight gain. Culture and media have an influence on the perception of ideal body size and shape for both men and women. Conclusions Underreporting weight loss might result in poor sensitivity of the WHO TB screening tool and suggests that we need either alternative ways to determine weight loss or screening tools for TB that are less dependent on reported symptoms.