The focus of this analysis was the Internalized AIDS-Related Stigma Scale, a six-item scale designed to measure the construct of internalized stigma [28 (link)]. Each item offers a binary (yes/no) response, and the total scale score is computed as the sum of the items. Internalized stigma represents the outcome of a process through which PLWHA accept their discredited status (imposed by the majority group) as valid and develop self-defacing internal representations of themselves [29 (link)]. Our use of a scale for one specific aspect of stigma, rather than a scale designed to more comprehensively measure different aspects of stigma [27 (link), 30 (link)], was driven largely by practical concerns about the overall length of the survey instrument.
The UARTO psychosocial assessments also sought to measure several potentially related constructs, including self-blame for HIV status, depression symptom severity, enacted stigma, health-related quality of life, and HIV-related symptom burden. We measured self-blame by asking participants whether they agreed (yes/no) with the statement, “It is my own fault that I am HIV-positive.” To measure depression symptom severity, we used the 15-item Hopkins Symptom Checklist for Depression [31 (link)]. Following prior studies of depression in Uganda, we modified the depression scale for the local context by adding a 16th item, “feeling like I don’t care about my health” [32 ]. Each item is scored on a four-point Likert-type scale ranging from 1 to 4, and the total scale score is computed as the average of the 16 items. To assess enacted stigma, which refers to overt acts of HIV-related discrimination [29 (link)], we asked participants whether or not they had ever experienced (yes/no) any one of 13 different events, including spousal abandonment, discrimination in health care settings, loss of housing, threats of violence, or physical assault. Health-related quality of life was measured with the Medical Outcomes Study-HIV Health Survey (MOS-HIV) mental health summary (MHS) and physical health summary (PHS) scores. The MOS-HIV consists of 35 items grouped into 11 domains, and higher MHS and PHS scores reflect a better health-related quality of life [33 (link)–35 (link)]. The individual domains are scored as summated rating scales from 0–100, and the overall MHS and PHS scores are transformed to t-scores with a mean of 50 and a standard deviation of 10. For HIV-related symptom burden, we inquired about whether or not participants had experienced, in the previous month, any of 29 potentially HIV-related symptoms (e.g., “tremors or shakes,” “problems with weight loss or wasting,” “change in the way your body looks such as fat deposits or weight gain,” “skin problems, such as rash, dryness, or itching,” “hair loss or changes in the way your hair looks,” “enlarged bumps in your neck, armpits, or groin,” etc.). Among participants who had experienced a particular symptom, the extent to which they found each symptom bothersome was scored on a four-point Likert-type scale ranging from 0 to 4. These variables were used to create an equally weighted average of the z-scores [36 ], with the sign of the aggregate measure oriented so that greater values of the symptom index are associated with a greater symptom burden.
The UARTO psychosocial assessments also sought to measure several potentially related constructs, including self-blame for HIV status, depression symptom severity, enacted stigma, health-related quality of life, and HIV-related symptom burden. We measured self-blame by asking participants whether they agreed (yes/no) with the statement, “It is my own fault that I am HIV-positive.” To measure depression symptom severity, we used the 15-item Hopkins Symptom Checklist for Depression [31 (link)]. Following prior studies of depression in Uganda, we modified the depression scale for the local context by adding a 16th item, “feeling like I don’t care about my health” [32 ]. Each item is scored on a four-point Likert-type scale ranging from 1 to 4, and the total scale score is computed as the average of the 16 items. To assess enacted stigma, which refers to overt acts of HIV-related discrimination [29 (link)], we asked participants whether or not they had ever experienced (yes/no) any one of 13 different events, including spousal abandonment, discrimination in health care settings, loss of housing, threats of violence, or physical assault. Health-related quality of life was measured with the Medical Outcomes Study-HIV Health Survey (MOS-HIV) mental health summary (MHS) and physical health summary (PHS) scores. The MOS-HIV consists of 35 items grouped into 11 domains, and higher MHS and PHS scores reflect a better health-related quality of life [33 (link)–35 (link)]. The individual domains are scored as summated rating scales from 0–100, and the overall MHS and PHS scores are transformed to t-scores with a mean of 50 and a standard deviation of 10. For HIV-related symptom burden, we inquired about whether or not participants had experienced, in the previous month, any of 29 potentially HIV-related symptoms (e.g., “tremors or shakes,” “problems with weight loss or wasting,” “change in the way your body looks such as fat deposits or weight gain,” “skin problems, such as rash, dryness, or itching,” “hair loss or changes in the way your hair looks,” “enlarged bumps in your neck, armpits, or groin,” etc.). Among participants who had experienced a particular symptom, the extent to which they found each symptom bothersome was scored on a four-point Likert-type scale ranging from 0 to 4. These variables were used to create an equally weighted average of the z-scores [36 ], with the sign of the aggregate measure oriented so that greater values of the symptom index are associated with a greater symptom burden.
