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Adolescents Living with HIV Stigma Scale

We are delighted to share the Adolescents Living with HIV Stigma Scale (ALHIV-SS) for use by other researchers, service providers and civil society. If you do use this scale, we ask that you please:

Email Dr Marija Pantelic (m.pantelic@bsms.ac.uk) if you have translated the scale into a different language so that we can help other researchers avoid duplication of work and save time; and
Cite the original paper that reports on the development of the scale: Pantelic, M., Boyes, M., Cluver, L., & Thabeng, M. (2016). ‘They Say HIV is a Punishment from God or from Ancestors’: Cross-Cultural Adaptation and Psychometric Assessment of an HIV Stigma Scale for South African Adolescents Living with HIV (ALHIV-SS). Child Indicators Research, 11(1). https://doi.org/10.1007/s12187-016-9428-5

BACKGROUND IMAGE FOR PANEL

About ALHIV-SS

ALHIV-SS measures three types of stigma among adolescents living with HIV:

Internalised stigma (internalised feelings of shame/inadequacy): 5 questions
Anticipated stigma (expected prejudice or discrimination from others): 2 questions
3. Enacted stigma (experiences of being treated unfairly / discriminated against): 3 questions

Questions were adapted from the Berger HIV stigma scale with extensive feedback from South African adolescents living with HIV. The scale showed good psychometric properties in a South African cohort of adolescents living with HIV (ages 10-18).

Adolescents who advised on the development of this scale wanted us to use vignettes with an image of an adolescent (named Lundi or a different culturally relevant name) who is experiencing stigma and asking respondents whether they have ever felt that way too. They hoped this would make it clearer that we as researchers do not endorse stigma and do not expect young people to feel bad about themselves just because they have HIV. They also suggested breaking up the questions so that internalised, anticipated and enacted stigma questions are asked in different parts of the survey, with less difficult questions in between.

BACKGROUND IMAGE FOR PANEL

ALHIV-SS questions

Note: Please use introductory vignettes with an image of an adolescent to represent Lundi before moving onto the questions.

Download the questions here >

Citation: Pantelic, M., Boyes, M., Cluver, L., & Thabeng, M. (2016). ‘They Say HIV is a Punishment from God or from Ancestors’: Cross-Cultural Adaptation and Psychometric Assessment of an HIV Stigma Scale for South African Adolescents Living with HIV (ALHIV-SS). Child Indicators Research, 11(1). https://doi.org/10.1007/s12187-016-9428-5