Adaptation and Validation of the Shame Questionnaire Among Ugandan Youth Living with HIV

Abstract

The purpose of this study was to adapt and validate a measure of HIV-related shame, the Shame Questionnaire (SQ), among Ugandan youth living with HIV. Culturally relevant, reliable and valid measurement is critical in the accurate assessment of HIV-related shame (a painful internalized emotion encompassing feelings that the self is damaged and defective) on psychosocial functioning, as well as the determination of the efficacy of interventions among youth living with HIV in sub-Saharan Africa. We utilized qualitative (i.e., cognitive interviews; N = 31) and quantitative (i.e., classical test theory and item response theory; N = 150) methods to establish, content, criterion and construct validity of the SQ. Cognitive interviews resulted in the revision in the wording of 2 out of 8 SQ items. Participants who endorsed having shame had statistically significant higher SQ scores than participants who did not endorse having shame (p < 0.001), suggesting criterion validity. We found a statistically significant positive relationship between SQ scores and average trauma symptom scores among participants (p < 0.001), also Reproduced with permission of copyright owner. Further reproduction prohibited without permission.

HIV-Related Shame, Stigma and the Mental Health Functioning of Adolescents Living with HIV: Findings from a Pilot Study in Uganda

“…All measures utilized in this study have been adapted and tested among adolescents affected by HIV in the study region [ 32 , 41 – 43 ]. Measures of mental health functioning include depressive symptoms, hopelessness, loneliness, child PTSD and self-concept.…”

“…Higher scores indicate higher levels of HIV-related shame. The scale has been adapted and validated to measure HIV-related shame among Ugandan ALHIV, with high internal consistency (Cronbach’s’ alpha = 0.84) [ 32 ]. HIV-related stigma was assessed by 9-items from the Berger Stigma Scale measuring both internalized and anticipated stigma [ 50 ], on a 4-point scale (1 = Strongly Disagree and 4 = Strongly Agree ) with a higher score indicating higher levels of internalized and anticipated stigma.…”

“…Even with these documented negative effects of shame, fewer studies have investigated shame among people living with HIV in Sub-Saharan Africa (SSA), especially among children and adolescents [ 32 ]. Most studies have focused on HIV-related stigma and its impact on mental health functioning [ 7 , 8 , 33 – 36 ].…”

A Multilevel Integrated Intervention to Reduce the Impact of HIV Stigma on HIV Treatment Outcomes Among Adolescents Living With HIV in Uganda: Protocol for a Randomized Controlled Trial

“…M-Suubi focuses on all forms of HIV stigma (internalized, anticipated, and enacted) and uses a range of strategies (eg, education, skill building, empowerment, and empathy) to address HIV stigma at the individual, interpersonal, and institutional levels [ 95 - 98 ]. Consistent with a multilevel approach to HIV stigma reduction, M-Suubi targets following three ecological levels: (1) school using GED-HIVSR, (2) family using MFG-HIVSR plus FEE, and (3) individual (adolescents living with HIV) using locally adapted Suubi-MAKA [ 105 , 121 , 122 ] and Suubi+Adherence [ 26 , 123 , 124 ] curricula. All intervention arms use a variety of strategies (eg, education, cognitive restructuring, empowerment, and skill building) to address HIV stigma .…”

Addressing the Syndemics of HIV, Mental Health, and COVID-19 Using the Health and Human Rights Framework among Youth Living with HIV, in Uganda: an Interpretive Phenomenological Study

“…The great majority of PLHIV report experiencing discriminatory and stigmatizing attitudes towards them (UNAIDS, 2007 ). A host of studies have documented multi-level aspects of HIV-related stigma, from internalized and perceived stigma to secondary and structural layers of stigma (Bennet et al, 2016 ; Berger et al, 2001 ; Karamouzian et al, 2017 ; Lekas et al, 2011 ; Michalopoulos et al, 2019 ; Stangl et al, 2019 , 2013 ; Wu et al, 2015 ). PLHIV can experience these in various combinations or intersections of stigma based on more than one attribute or behavior, including negative self-image (internalized shame) and perceived stigma (i.e., social rejection) due to HIV.…”