Abstract
Internalized stigma and disclosure concerns are key elements for the study of mental health in people living with HIV. Since no measures of these constructs were available for Spanish population, this study sought to develop such instruments, to analyze their reliability and validity and to provide a short version. A heterogeneous sample of 458 adults from different Spanish-speaking countries completed the HIV-Internalized Stigma Scale and the HIV-Disclosure Concerns Scale, along with the Hospital Anxiety and Depression Scale, Rosenberg’s Self-esteem Scale and other socio-demographic variables. Reliability and correlation analyses, exploratory factor analyses, path analyses with latent variables, and ANOVAs were conducted to test the scales’ psychometric properties. The scales showed good reliability in terms of internal consistency and temporal stability, as well as good sensitivity and factorial and criterion validity. The HIV-Internalized Stigma Scale and the HIV-Disclosure Concerns Scale are reliable and valid means to assess these variables in several contexts.
Resumen
El Estigma Internalizado y el Miedo a Comunicar el Diagnóstico son clave para el estudio de la salud mental en personas con VIH. Dado que no existían herramientas para evaluarlos en población española, el propósito de este estudio fue desarrollar tales escalas, analizar su fiabilidad y validez y proporcionar una versión abreviada. Una muestra heterogénea de 458 adultos de diferentes países hispanoparlantes completaron la Escala de Estigma Internalizado-VIH y la Escala de Miedo a Comunicar el Diagnóstico-VIH, junto con la Hospital Anxiety and Depression Scale, la Escala de Autoestima de Rosenberg y otras variables socio-demográficas. Para evaluar las propiedades psicométricas de las escalas desarrolladas, se realizaron análisis de fiabilidad, correlacionales y factoriales exploratorios, así como modelos de rutas con variables latentes y ANOVAs. Las escalas mostraron buena fiabilidad en términos de consistencia interna y estabilidad temporal, así como buena sensibilidad y validez factorial y referida a criterio. La Escala de Estigma Internalizado-VIH y la Escala de Miedo a Comunicar el Diagnóstico-VIH constituyen medios fiables y válidos para evaluar estas variables en diferentes contextos.
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Acknowledgments
The authors would like to acknowledge the HIV associations in Spain and Latin America for their help with the data collection, being especially grateful to Apoyo Positivo, whose help was fundamental both for the focus group and the data collection. The authors would also like to acknowledge Manuel Martín-Fernandez for his statistics-related advice, Rocío Rodríguez-Rey for the review of the first draft, and Joey Taylor, Mallory Johnson and Torsten Neilands for their comments on the manuscript. Finally, the first author would like to acknowledge the financial support given by the Spanish Ministerio de Educación, Cultura y Deporte through a FPU fellowship.
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Appendices
Appendix 1: English Translation of the HIV Internalized Stigma Scale
Please indicate the degree in which you felt in the following ways during the last month because of having HIV:
Never or hardly ever | Rarely | Sometimes | Very often | All or almost all the time | |
|---|---|---|---|---|---|
1. I felt dirty or stained | 1 | 2 | 3 | 4 | 5 |
2. I felt guilty | 1 | 2 | 3 | 4 | 5 |
3. I felt embarrassed | 1 | 2 | 3 | 4 | 5 |
4. I felt flawed or incomplete | 1 | 2 | 3 | 4 | 5 |
5. I felt disappointed with myself | 1 | 2 | 3 | 4 | 5 |
6. I thought I was promiscuous | 1 | 2 | 3 | 4 | 5 |
7. I thought I don’t deserve to be loved | 1 | 2 | 3 | 4 | 5 |
8. I thought I have HIV because I did things that aren’t good | 1 | 2 | 3 | 4 | 5 |
9. I felt repulsion for myself | 1 | 2 | 3 | 4 | 5 |
10. I thought I’m being punished for having done immoral things | 1 | 2 | 3 | 4 | 5 |
Appendix 2: English Translation of the HIV Disclosure Concerns Scale
Please indicate the degree in which the following sentences describe what you think or feel:
Very little | Little | Somewhat | Much | A great deal | |
|---|---|---|---|---|---|
1. It’s difficult to tell people that I have HIV | 1 | 2 | 3 | 4 | 5 |
2. I’d do almost anything to avoid that people know that I have HIV | 1 | 2 | 3 | 4 | 5 |
3. I’m very careful with whom I tell I have HIV | 1 | 2 | 3 | 4 | 5 |
4. I’m worried that if my appearance changes because of HIV or the treatment, someone may find out that I have it | 1 | 2 | 3 | 4 | 5 |
5. I’m worried that if I attend or participate in an HIV group, someone may see me and be suspicious | 1 | 2 | 3 | 4 | 5 |
6. I’m worried about someone seeing my medical reports and finding out about my HIV | 1 | 2 | 3 | 4 | 5 |
7. I’m worried that if I go to the doctor or I get ill, someone close to me might find that I have HIV | 1 | 2 | 3 | 4 | 5 |
I’m worried about how they would react if they knew I have HIV | |||||
8. The most important people for me | 1 | 2 | 3 | 4 | 5 |
9. People from work | 1 | 2 | 3 | 4 | 5 |
10. Other people I interact with | 1 | 2 | 3 | 4 | 5 |
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Hernansaiz-Garrido, H., Alonso-Tapia, J. Internalized HIV Stigma and Disclosure Concerns: Development and Validation of Two Scales in Spanish-Speaking Populations. AIDS Behav 21, 93–105 (2017). https://doi.org/10.1007/s10461-016-1305-1
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DOI: https://doi.org/10.1007/s10461-016-1305-1