Development of shortened HIV-related stigma scales for young people living with HIV and young people affected by HIV in India

Background: HIV-related stigma is associated with poor quality of life and poor healthcare-seeking behaviours in Young People Living with HIV (YPLHIV) and Young People Affected by HIV (YPAHIV). India has an estimated 120,000 YPLHIV and 4 million YPAHIV, but efforts to measure HIV-related stigma in them are sparse, impeded by the lack of appropriate measuring instruments. Here, we describe the development of the Pune HIV-Stigma Scale (PHSS) and modified-PHSS to measure HIV-related stigma among YPLHIV and YPAHIV, respectively, in India. Methods: : Data from a mental health study for YPLHIV and YPAHIV, conducted at Byramjee Jeejeebhoy Government Medical College & Sassoon General Hospitals, Pune, India, between August 2018 and June 2021 were used. Findings from multiple confirmatory factor analyses (fit to previously published scales) and cognitive interviews were used to develop the 12-item PHSS with four subscales (personalized stigma, disclosure concerns, negative self-image, concern about public attitudes). The modified-PHSS was developed by confirming the structure of the PHSS for YPAHIV. Convergent validity with Center for Epidemiological Studies Depression (CES-D) and UCLA Loneliness scales was assessed using Spearman’s correlation coefficients. Results: : Median ages of YPLHIV (n=124) and YPAHIV (n= 93) were 19 years (IQR: 15-25); 52% of YPLHIV and 44% of YPAHIV were male. Model fit indices were good for both PHSS (χ 2 =65.0, df =48, p-value: 0.052; root mean square error of approximation (RMSEA): 0.054; comparative fit index (CLI): 0.980; Tucker-Lewis index (TLI): 0.972; and standardized root mean square residual (SRMR): 0.067) and modified-PHSS (χ 2 = 56.9, df =48, p-value: 0.176; RMSEA: 0.045; CLI: 0.983; TFI: 0.976, and SRMR:0.078). Spearman’s correlation coefficients indicated low to moderate convergent validity (ρ: 0.03 – 0.52) across different subscales of the PHSS and modified-PHSS. Cronbach’s alpha for the PHSS was 0.82 and for the modified-PHSS 0.81. Conclusion: We developed the first scales to measure HIV-related stigma among YPLHIV and YPAHIV in India. These concise scales can facilitate measurement of HIV-related stigma more frequently in research studies. We recommend that they be tested in different Indian languages.