Assessing stigma in low- and middle-income countries: A systematic review of scales used with children and adolescents.

ABSTRACT

INTRODUCTION: Stigmatization contributes to health inequalities, impacting the wellbeing of children and adolescents negatively. Addressing stigmatization requires adequate measurement. Our systematic review synthesizes the content of scales used with children and adolescents in low- and middle-income countries (LMICs) across stigmas, and examines their comparability and level of cultural adaptation. METHODS: Ten databases were systematically searched combining three sets of search terms (i) stigma, (ii) scales, and (iii) LMICs. Studies conducted in LMICs, with a sample with mean age below 18 and reporting a minimum of one stigma scale, were eligible. We allocated scale items to four frameworks (i) dimensions, or drivers of stigmatization; (ii) target variants, or types of stigmatization; (iii) socio-ecological levels, and (iv) cross-cultural equivalence, or scale adaptation to context/population. Based on percentages, we compared scale content per age cohort, stigma status, region, and stigma category. RESULTS: Out of 14,348 records, we included 93 articles (112 scales). Most studies focused on adolescents (12-18 years). Twelve scales were used more than once, seven were used across regions, and four were employed for multiple stigmas. Physical health stigma, and HIV/AIDS-related stigma in particular, was measured most; mental health and multiple/generic stigmas least. Physical and mental health scales were generally more comprehensive, i.e., measuring more stigma facets. In general, scales consistently measured two of the 21 included stigma facets, namely the disruptiveness dimension and the community level. Cross-cultural equivalence was moderate; conceptual and measurement equivalence were high. DISCUSSION: Although scales were largely comparable in how they measure stigma, they failed to reflect the complexity of the stigmatization process and fell short of existing stigma frameworks and qualitative research. Stigma research with children should work towards cross-culturally validated stigma scale sets which incorporate more facets of existing stigma frameworks, thus facilitating comparability across cultural contexts and informing intervention development and evaluation.