Skip to main content

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 suggesting criterion validity. Finally, we found construct validity with discrimination parameters of the graded response IRT model all in the high range with a wide range of difficulty parameters across the 8 items of the SQ. Overall our results suggest that the SQ is a contextually relevant, valid and reliable assessment tool among Ugandan youth living with HIV. Findings provide support for the utilization of qualitative and quantitative methods in the adaptation of measures for cross-cultural use in order to maintain validity and contextual relevance.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2

References

  • Baker, F. B. (2001). The basics of item response theory. For full text: http://ericae.net/irt/baker.

  • Bass, J. K., Bolton, P. A., & Murray, L. K. (2007). Do not forget culture when studying mental health. The Lancet, 370(9591), 918–919.

    Article  Google Scholar 

  • Bennett, D. S., Traub, K., Mace, L., Juarascio, A., & O'Hayer, C. V. (2016). Shame among people living with HIV: A literature review. AIDS Care, 28(1), 87–91.

    Article  Google Scholar 

  • Bolton, P. (2001). Cross-cultural validity and reliability testing of a standard psychiatric assessment instrument without a gold standard. Journal of Nervous and Mental Disease, 189(4), 238–242.

    Article  Google Scholar 

  • Bresnahan, M., & Zhuang, J. (2011). Exploration and validation of the dimensions of stigma. Journal of Health Psychology, 16(3), 421–429.

    Article  Google Scholar 

  • Cicchetti, D. V. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment, 6(4), 284–290.

    Article  Google Scholar 

  • Cohen, J. A., Deblinger, E., Mannarino, A. P., & Steer, R. A. (2004). A multisite, randomized controlled trial for children with sexual abuse–related PTSD symptoms. Journal of the American Academy of Child & Adolescent Psychiatry, 43(4), 393–402.

    Article  Google Scholar 

  • Collins, D. (2003). Pretesting survey instruments: An overview of cognitive methods. Quality of Life Research, 12(3), 229–238.

    Article  Google Scholar 

  • De Jesus, M., Carrete, C., Maine, C., & Nalls, P. (2015). Attitudes, perceptions and behaviours towards HIV testing among African-American and East African immigrant women in Washington, DC: Implications for targeted HIV testing promotion and communication strategies. Sexually Transmitted Infections, 91(8), 569–575. https://doi.org/10.1136/sextrans-2014-051876.

    Article  Google Scholar 

  • Deblinger, E., Mannarino, A. P., Cohen, J. A., & Steer, R. A. (2006). A follow-up study of a multisite, randomized, controlled trial for children with sexual abuse-related PTSD symptoms. Journal of the American Academy of Child & Adolescent Psychiatry, 45(12), 1474–1484.

    Article  Google Scholar 

  • Dickerson, S. S., Gruenewald, T. L., & Kemeny, M. E. (2004). When the social self is threatened: Shame, physiology, and health. Journal of Personality, 72(6), 1191–1216.

    Article  Google Scholar 

  • Duffy, L. (2005). Culture and context of HIV prevention in rural Zimbabwe: The influence of gender inequality. Journal of Transcultural Nursing, 16(1), 23–31.

    Article  Google Scholar 

  • Embretson, S. E., & Reise, S. P. (2013). Item response theory for psychologists. Mahwah: Laurence Erlbaum Associates, Publishers.

    Google Scholar 

  • Feiring, C., & Taska, L. S. (2005). The persistence of shame following sexual abuse: A longitudinal look at risk and recovery. Child Maltreatment, 10(4), 337–349. https://doi.org/10.1177/1077559505276686.

    Article  Google Scholar 

  • Feiring, C., Taska, L., & Lewis, M. (2002). Adjustment following sexual abuse discovery: The role of shame and attributional style. Developmental Psychology, 38(1), 79–92.

    Article  Google Scholar 

  • Feiring, C., Miller-Johnson, S., & Cleland, C. M. (2007). Potential pathways from stigmatization and internalizing symptoms to delinquency in sexually abused youth. Child Maltreatment, 12(3), 220–232.

    Article  Google Scholar 

  • Feiring, C., Simon, V. A., & Cleland, C. M. (2009). Childhood sexual abuse, stigmatization, internalizing symptoms, and the development of sexual difficulties and dating aggression. Journal of Consulting and Clinical Psychology, 77(1), 127–137.

    Article  Google Scholar 

  • Genberg, B. L., Kawichai, S., Chingono, A., Sendah, M., Chariyalertsak, S., Konda, K. A., & Celentano, D. D. (2008). Assessing HIV/AIDS stigma and discrimination in developing countries. AIDS and Behavior, 12(5), 772–780.

    Article  Google Scholar 

  • Go, U. (2013). HIV and AIDS Uganda country progress report. Commission UA, editor. Kampala2013.

  • Hutcheson, G. D., Sofroniou, N. (1999). The multivariate social scientist: Introductory statistics using generalized linear models. London: Sage Publications.

    Book  Google Scholar 

  • Jacobi, C. A., Atanga, P. N., Bin, L. K., Mbome, V. N., Akam, W., Bogner, J. R., Kropf, S., & Malfertheiner, P. (2013). HIV/AIDS-related stigma felt by people living with HIV from Buea, Cameroon. AIDS Care, 25(2), 173–180.

    Article  Google Scholar 

  • Katz, I. T., Ryu, A. E., Onuegbu, A. G., Psaros, C., Weiser, S. D., Bangsberg, D. R., & Tsai, A. C. (2013). Impact of HIV-related stigma on treatment adherence: Systematic review and meta-synthesis. Journal of the International AIDS Society, 16(Suppl 2), 18640. https://doi.org/10.7448/IAS.16.3.18640

  • Konkle-Parker, D. J., Erlen, J. A., & Dubbert, P. M. (2008). Barriers and facilitators to medication adherence in a southern minority population with HIV disease. Journal of the Association of Nurses in AIDS Care, 19(2), 98–104.

    Article  Google Scholar 

  • Krüsi, A., Small, W., Wood, E., & Kerr, T. (2009). An integrated supervised injecting program within a care facility for HIV-positive individuals: A qualitative evaluation. AIDS Care, 21(5), 638–644.

    Article  Google Scholar 

  • Kyaddondo, D., Wanyenze, R. K., Kinsman, J., & Hardon, A. (2013). Disclosure of HIV status between parents and children in Uganda in the context of greater access to treatment. SAHARA-J: Journal of Social Aspects of HIV/AIDS, 10(sup1), S37–S45.

    Article  Google Scholar 

  • Lowther, K., Selman, L., Harding, R., & Higginson, I. J. (2014). Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): A systematic review. International Journal of Nursing Studies, 51(8), 1171–1189.

    Article  Google Scholar 

  • Luisa Zúñiga, M., Blanco, E., Martínez, P., Strathdee, S. A., & Gifford, A. L. (2007). Perceptions of barriers and facilitators to participation in clinical trials in HIV-positive Latinas: A pilot study. Journal of Women's Health, 16(9), 1322–1330.

    Article  Google Scholar 

  • Michalopoulos, L. T. M., Murray, L. K., Kane, J. C., Wyk, S. S., Chomba, E., Cohen, J., Imasiku, M., Semrau, K., Unick, J., & Bolton, P. A. (2015). Testing the validity and reliability of the shame questionnaire among sexually abused girls in Zambia. PLoS One, 10(4), e0123820. https://doi.org/10.1371/journal.pone.0123820.

    Article  Google Scholar 

  • Neufeld, S. A., Sikkema, K. J., Lee, R. S., Kochman, A., & Hansen, N. B. (2012). The development and psychometric properties of the HIV and Abuse Related Shame Inventory (HARSI). AIDS and Behavior, 16(4), 1063–1074.

    Article  Google Scholar 

  • Nguyen, T. H., Han, H.-R., Kim, M. T., & Chan, K. S. (2014). An introduction to item response theory for patient-reported outcome measurement. The Patient-Patient-Centered Outcomes Research, 7(1), 23–35.

    Article  Google Scholar 

  • Nunnally, J. C., & Bernstein, I. (1994). Psychometric therapy. New York: McGraw-Hill.

    Google Scholar 

  • 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, 1–17. https://doi.org/10.1007/s12187-016-9428.

  • Pantelic, M., Boyes, M., Cluver, L., & Meinck, F. (2017). HIV, violence, blame and shame: Pathways of risk to internalized HIV stigma among south African adolescents living with HIV. Journal of International AIDS Society, 20(1), 21771. https://doi.org/10.7448/IAS.20.1.21771

  • Persons, E., Kershaw, T., Sikkema, K. J., & Hansen, N. B. (2010). The impact of shame on health-related quality of life among HIV-positive adults with a history of childhood sexual abuse. AIDS Patient Care and STDs, 24(9), 571–580.

    Article  Google Scholar 

  • Prince, M., Patel, V., Saxena, S., Maj, M., Maselko, J., Phillips, M., & Rahman, A. (2007). Global mental health 1 - no health without mental health. The Lancet, 370(9590), 859–877.

    Article  Google Scholar 

  • Qualtrics Software. Provo Utah (2016). http://www.qualtrics.com

  • Rodkjaer, L., Laursen, T., Balle, N., & Sodemann, M. (2010). Depression in patients with HIV is under-diagnosed: A cross-sectional study in Denmark. HIV Medicine, 11(1), 46–53.

    Article  Google Scholar 

  • Samejima, F. (1997). Graded response model. In W. J. van der Linden, & R. K. Hambleton (Eds.), Handbook of modern item response theory (pp 85–100). New York: Springer.

  • Schaan, M. M., Taylor, M., Gungqisa, N., & Marlink, R. (2016). Personal views about womanhood amongst women living with HIV in Botswana. Culture Health Sexuality, 18(2), 171–183.

    Article  Google Scholar 

  • Shoeb, M., Weinstein, H., & Mollica, R. (2007). The Harvard trauma questionnaire: Adapting a cross-cultural instrument for measuring torture, trauma and posttraumatic stress disorder in Iraqi refugees. International Journal of Social Psychiatry, 53(5), 447–463.

    Article  Google Scholar 

  • Sikkema, K. J., Hansen, N. B., Meade, C. S., Kochman, A., & Fox, A. M. (2009). Psychosocial predictors of sexual HIV transmission risk behavior among HIV-positive adults with a sexual abuse history in childhood. Archives of Sexual Behavior, 38(1), 121–134.

    Article  Google Scholar 

  • StataCorp. (2013). Stata statistical software: Release 13. College Station: StataCorp LP.

    Google Scholar 

  • Teresi, J. A. (2006). Overview of quantitative measurement methods: Equivalence, invariance, and differential item functioning in health applications. Medical Care, 44(11), S39–S49.

    Article  Google Scholar 

  • UNAIDS (2017). Global HIV statistics: Fact sheet July 2017. UNAIDS. Retrieved from http://www.unaids.org/sites/default/files/media_asset/UNAIDS_FactSheet_en.pdf. Accessed 10 Dec 2017.

  • Vreeman, R. C., Nyandiko, W. M., Ayaya, S. O., Walumbe, E. G., & Inui, T. S. (2014). Cognitive interviewing for cross-cultural adaptation of pediatric antiretroviral therapy adherence measurement items. International Journal of Behavioral Medicine, 21(1), 186–196.

    Article  Google Scholar 

  • Weathers, F., Blake, D., Schnurr, P., Kaloupek, D., Marx, B., & Keane, T. (2013). The Life Events Checklist for DSM-5 (LEC-5). Retrieved from National Center for PTSD at: http://www.ptsd.va.gov/professional/assessment/te-measures/life_events_checklist.asp.

  • Wolfe, V. V., Michienzi, C. G. T., Sas, L., & Wolfe, D. A. (1991). The Children’s impact of traumatic events scale: A measure of post-sexual-abuse PTSD symptoms. Behavioral Assessment, 13, 359–383.

    Google Scholar 

Download references

Funding

This study was funded by the National Institute of Health, NIH: 1R01HD074949–01 to Dr. Fred Ssewamala. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Author information

Authors and Affiliations

Authors

Contributions

LM designed and executed the study, conducted data analyses and drafted the manuscript. MM collaborated with the data analyses and the manuscript. SMM collaborated with data analyses and contributed to writing the manuscript. JK collaborated with the analyses and assisted with editing the manuscript. MNM collaborated with the execution of the study, data analyses and editing of the manuscript. FN collaborated with the execution of the study, data analyses and editing of the manuscript. CF collaborated with data analyses and edited the manuscript. FMS collaborated with the design and execution of the study and edited the manuscript.

Corresponding author

Correspondence to Lynn Murphy Michalopoulos.

Ethics declarations

Ethical Approval

All procedures performed in this study involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Conflict of Interest

The authors declare they have no conflict of interest.

Informed Consent

Informed consent was obtained from all individual participants included in the study. Informed consent was also obtained by guardians of participants under the age of 16.

Electronic supplementary material

Data related to this study are available and are attached as supplementary materials.

ESM 1

(XLS 250 kb)

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Michalopoulos, L.M., Meinhart, M., Barton, S.M. et al. Adaptation and Validation of the Shame Questionnaire Among Ugandan Youth Living with HIV. Child Ind Res 12, 1023–1042 (2019). https://doi.org/10.1007/s12187-018-9570-3

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12187-018-9570-3

Keywords

  • HIV-related shame
  • Youth
  • Sub-Saharan Africa
  • Cognitive interviews
  • Item response theory