Skip to main content

Maternal HIV Stigma and Child Adjustment: Qualitative and Quantitative Perspectives

Abstract

Globally, over 36 million people are living with HIV, and 51% are women, most of whom are of childbearing age. Children of mothers with HIV exhibit more adjustment problems than their demographically similar peers. Using mixed methods, this study examined associations between mothers’ HIV stigma and their children’s functioning. As part of a multi-site study in Georgia and California, participants included 181 HIV-positive mothers and one of their 6- to 14-year-old children. Mothers reported on children’s psychological adjustment, their own anxiety, and their perceived HIV stigma. Children reported on parent-child relationship quality. Following the quantitative portion of the study, 14 mothers and 13 children who knew their mothers were HIV positive completed in-depth qualitative interviews addressing the impact of HIV disclosure on family relationships. Hierarchical regression analyses found that parent-child relationship quality, maternal anxiety, and HIV stigma were significantly associated with child adjustment difficulties. HIV stigma predicted child adjustment problems after accounting for the role of parent-child relationship and maternal anxiety. Most mothers and some children in the qualitative portion of the study discussed the impact HIV stigma on their lives. In all, despite efforts to decrease HIV stigma, it continues to affect the lives of those with the virus and their families. Interventions, then, should not only focus on the parent-child relationship and maternal anxiety when attending to child functioning in families affected by HIV, but should also target coping skills for mitigating the impact of stigma while continuing efforts to reduce HIV-related stigma.

Highlights

  • Maternal HIV stigma is significantly associated with child adjustment difficulties.

  • HIV stigma persists as a significant concern for families affected by maternal HIV.

  • Qualitative reports of HIV stigma are consistent with ones from over 15 years ago.

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

References

  1. Abidin, R. R., & Abidin, R. R. (1990). Parenting stress index (PSI) (Vol. 100). Charlottesville, VA: Pediatric Psychology Press.

  2. Achenbach, T. M. (1991). Manual for the child behavior checklist/4-18 and 1991 profile. University of Vermont, Department of Psychiatry.

  3. Armistead, L., Cook, S., Skinner, D., Toefy, Y., Anthony, E. R., Zimmerman, L., Salama, C., Hipp, T., Goodnight, B., & Chow, L. (2014). Preliminary results from a family-based HIV prevention intervention for South African youth. Health Psychology, 33(7), 668–676. https://doi.org/10.1037/hea0000067.

    Article  PubMed  Google Scholar 

  4. Baugher, A. R., Beer, L., Fagan, J. L., Mattson, C. L., Freedman, M., Skarbinski, J., & Shouse, R. L. (2017). Prevalence of internalized HIV-related stigma among HIV-infected adults in care, United States, 2011–2013. AIDS and Behavior, 21(9), 2600–2608. https://doi.org/10.1007/s10461-017-1712-y.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Bauman, L. J., Camacho, S., Silver, E. J., Hudis, J., & Draimin, B. (2002). Behavioral problems in school-aged children of mothers with HIV/AIDS. Clinical Child Psychology and Psychiatry, 7(1), 39–54. https://doi.org/10.1177/1359104502007001004.

    Article  Google Scholar 

  6. Berger, B. E., Ferrans, C. E., & Lashley, F. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24(6), 518–529.

    Article  Google Scholar 

  7. Bogart, L. M., Cowgill, B. O., Kennedy, D., Ryan, G., Murphy, D. A., Elijah, J., & Schuster, M. A. (2008). HIV-related stigma among people with HIV and their families: A qualitative analysis. AIDS and Behavior, 12(2), 244–254. https://doi.org/10.1007/s10461-007-9231-x.

    Article  PubMed  Google Scholar 

  8. Brislin, R. W. (1970). Back-translation for cross-cultural research. Journal of Cross-Cultural Psychology, 1(3), 187–216.

    Article  Google Scholar 

  9. Burstein, M., Ginsburg, G. S., & Tein, J.-Y. (2010). Parental anxiety and child symptomatology: An examination of additive and interactive effects of parent psychopathology [corrected]. Journal of Abnormal Child Psychology, 38(7), 897–909.

    Article  Google Scholar 

  10. Chi, P., & Li, X. (2013). Impact of parental HIV/AIDS on children’s psychological well-being: A systematic review of global literature. AIDS and Behavior, 17(7), 2554–2574.

    Article  Google Scholar 

  11. Chi, P., Li, X., Du, H., Tam, C. C., Zhao, J., & Zhao, G. (2016). Does stigmatization wear down resilience? A longitudinal study among children affected by parental HIV. Personality and Individual Differences, 96, 159–163. https://doi.org/10.1016/j.paid.2016.03.001.

    Article  Google Scholar 

  12. Creswell, J. W. (2015). A concise introduction to mixed methods research. London: Sage.

  13. Creswell, J. W., & Plano Clark, V. L. (2011). Choosing a mixed methods design. Designing and Conducting Mixed Methods Research, 2, 53–106.

    Google Scholar 

  14. Derlega, V. J., Winstead, B. A., Greene, K., Serovich, J., & Elwood, W. N. (2004). Reasons for HIV disclosure/nondisclosure in close relationships: Testing a model of HIV-disclosure decision making. Journal of Social & Clinical Psychology, 23, 747–767.

    Article  Google Scholar 

  15. Earnshaw, V. A., & Chaudoir, S. R. (2009). From conceptualizing to measuring HIV stigma: A review of HIV stigma mechanism measures. AIDS and Behavior, 13(6), 1160–1177. https://doi.org/10.1007/s10461-009-9593-3.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Earnshaw, V. A., Smith, L. R., Chaudoir, S. R., Amico, K. R., & Copenhaver, M. M. (2013). HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS and Behavior, 17(5), 1785–1795. https://doi.org/10.1007/s10461-013-0437-9.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Forehand, R., Jones, D. J., Kotchick, B. A., Armistead, L., Morse, E., Morse, P. S., & Stock, M. (2002). Noninfected children of HIV-infected mothers: A 4-year longitudinal study of child psychosocial adjustment and parenting. Behavior Therapy, 33(4), 579–600.

    Article  Google Scholar 

  18. Frost, D. M., & Ouellette, S. C. (2011). A search for meaning: Recognizing the potential of narrative research in social policy-making efforts. Sexuality Research and Social Policy, 8(3), 151–161.

    Article  Google Scholar 

  19. Gamarel, K. E., Kuo, C., Boyes, M. E., & Cluver, L. D. (2017). The dyadic effects of HIV stigma on the mental health of children and their parents in South Africa. Journal of HIV/AIDS & Social Services, 16(4), 351–366.

    Article  Google Scholar 

  20. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, N.J.: Prentice-Hall.

  21. Goodrum, N. M., Masyn, K. E., Armistead, L. P., Avina, I., Schulte, M., Marelich, W., Murphy, D. A. (2021). A mixed-methods longitudinal investigation of mothers’ disclosure of HIV to their children. Child Development. Advanced online publication. https://doi.org/10.1111/cdev.13493

  22. Hough, E. S., Brumitt, G., Templin, T., Saltz, E., & Mood, D. (2003). A model of mother-child coping and adjustment to HIV. Social Science & Medicine, 56(3), 643–655.

    Article  Google Scholar 

  23. Joint United Nations Programme on HIV/AIDS [UNAIDS]. (2015). On the Fast-Track to end AIDS by 2030: Focus on location and population. Retrieved from http://www.unaids.org/sites/default/files/media_asset/WAD2015_report_en_part01.pdf

  24. Jones, D. J., Forehand, R., Brody, G. H., & Armistead, L. (2002). Positive parenting and child psychosocial adjustment in inner-city single-parent African American families: The role of maternal optimism. Behavior Modification, 26(4), 464–481. https://doi.org/10.1177/0145445502026004002.

    Article  PubMed  Google Scholar 

  25. 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(3 Suppl 2), 18640 https://doi.org/10.7448/IAS.16.3.18640.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Krueger, R. F., & Markon, K. E. (2006). Reinterpreting comorbidity: A model-based approach to understanding and classifying psychopathology. Annual Review of Clinical Psychology, 2, 111–133. https://doi.org/10.1146/annurev.clinpsy.2.022305.095213.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Li, X., Wang, H., Williams, A., & He, G. (2009). Stigma reported by people living with HIV in south central China. Journal of the Association of Nurses in AIDS Care, 20(1), 22–30. https://doi.org/10.1016/j.jana.2008.09.007.

    Article  Google Scholar 

  28. Lipira, L., Williams, E. C., Huh, D., Kemp, C. G., Nevin, P. E., & Greene, P. (2018). HIV-related stigma and viral suppression among African-American women: Exploring the mediating roles of depression and ART nonadherence. AIDS and Behavior, 23, 2025–2036.

    Article  Google Scholar 

  29. Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis an expanded sourcebook. Thousand Oaks: SAGE.

  30. Murphy, D. A., Armistead, L., Payne, D. L., Marelich, W. D., & Herbeck, D. M. (2016). Pilot trial of a parenting and self-care intervention for HIV-positive mothers: The IMAGE program. AIDS Care, 29, 40–48.

    Article  Google Scholar 

  31. Murphy, D. A., Austin, E. L., & Greenwell, L. (2006). Correlates of HIV-related stigma among HIV-positive mothers and their uninfected adolescent children. Women Health, 44(3), 19–42. https://doi.org/10.1300/J013v44n03_02.

    Article  PubMed  Google Scholar 

  32. Murphy, D. A., Durako, S. J., Moscicki, A. B., Vermund, S. H., Ma, Y., Schwarz, D. F., & Muenz, L. R., Adolescent Medicine HIV/AIDS Research Network. (2001). No change in health risk behaviors over time among HIV infected adolescents in care: role of psychological distress. Journal of adolescent Health, 29(3), 57–63.

    Article  Google Scholar 

  33. Murphy, D. A., Marelich, W. D., Armistead, L., Herbeck, D. M., & Payne, D. L. (2010). Anxiety/stress among mothers living with HIV: Effects on parenting skills and child outcomes. AIDS Care, 22(12), 1449–1458. https://doi.org/10.1080/09540121.2010.487085.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Murphy, D. A., Roberts, K. J., & Hoffman, D. (2002). Stigma and ostracism associated with HIV/AIDS: Children carrying the secret of their mothers’ HIV+ serostatus. Journal of Child and Family Studies, 11(2), 191–202. https://doi.org/10.1023/A:1015177609382.

    Article  Google Scholar 

  35. NIH Office of Behavioral and Social Sciences (2018). Best practices for mixed methods research in the health sciences (2nd ed). Bethesda: National Institutes of Health.

  36. Nyblade, L. C. (2006). Measuring HIV stigma: Existing knowledge and gaps. Psychology, Health & Medicine, 11(3), 335–345.

    Article  Google Scholar 

  37. Onyebuchi-Iwudibia, O., & Brown, A. (2014). HIV and depression in eastern Nigeria: The role of HIV-related stigma. AIDS Care, 26(5), 653–657.

    Article  Google Scholar 

  38. Pachankis, J. E. (2007). The psychological implications of concealing a stigma: a cognitive-affective-behavioral model. Psychological Bulletin, 133(2), 328–345. https://doi.org/10.1037/0033-2909.133.2.328.

    Article  PubMed  Google Scholar 

  39. Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine, 57(1), 13–24. https://doi.org/10.1016/S0277-9536(02)00304-0.

    Article  Google Scholar 

  40. Prinz, R. J., Foster, S., Kent, R. N., & O’Leary, K. D. (1979). Multivariate assessment of conflict in distressed and nondistressed mother-adolescent dyads. Journal of Applied Behavior Analysis, 12(4), 691–700. https://doi.org/10.1901/jaba.1979.12-691.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Qiao, X., Li, F., & Stanton, B. (2013). Disclosure of parental HIV infection to children: A systematic review of global literature. AIDS and Behavior, 17, 369–389.

    Article  Google Scholar 

  42. Rao, D., Chen, W. T., Pearson, C. R., Simoni, J. M., Fredriksen-Goldsen, K., & Nelson, K. (2012). Social support mediates the relationship between HIV stigma and depression/quality of life among people living with HIV in Beijing. China. International Journal of STD & AIDS, 23. https://doi.org/10.1258/ijsa.2009.009428

  43. Rice, W. S., Turan, B., Fletcher, F. E., Napoles, T. M., Walcott, M., Batchelder, A., Kempf, M. C., Konkle-Parker, D. J., Wilson, T. E., Tien, P. C., Wingood, G. M., Neilands, T. B., Johnson, M. O., Weiser, S. D., & Turan, J. M. (2019). A mixed methods study of anticipated and experienced stigma in health care settings among women living with HIV in the United States. AIDS Patient Care and STDS, 33, 184–195.

    Article  Google Scholar 

  44. Rueda, S., Mitra, S., Chen, S., Gogolishvili, D., Globerman, J., Chambers, L., Wilson, M., Logie, C. H., Shi, Q., Morassaei, S., & Rourke, S. B. (2016). Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: A series of meta-analyses. BMJ Open, 6(7), e011453 https://doi.org/10.1136/bmjopen-2016-011453.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Samji, H., Cescon, A., Hogg, R. S., Modur, S. P., Althoff, K. N., Buchacz, K., Burchell, A. N., Cohen, M., Gebo, K. A., Gill, M. J., Justice, A., Kirk, G., Klein, M. B., Korthuis, P. T., Martin, J., Napravnik, S., Rourke, S. B., Sterling, T. R., Silverberg, M. J., & Gange, S. J. (2013). Closing the gap: Increases in life expectancy among treated HIV-positive individuals in the United States and Canada. PLOS ONE, 8(12), e81355 https://doi.org/10.1371/journal.pone.0081355.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Sayles, J. N., Hays, R. D., Sarkisian, C. A., Mahajan, A. P., Spritzer, K. L., & Cunningham, W. E. (2008). Development and psychometric assessment of a multidimensional measure of internalized HIV stigma in a sample of HIV-positive adults. AIDS and Behavior, 12(5), 748–758. https://doi.org/10.1007/s10461-008-9375-3.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Spitzer, R. L., Kroenke, K., Williams, J. B., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of Internal Medicine, 166(10), 1092–1097.

    Article  Google Scholar 

  48. Tompkins, T. L., & Wyatt, G. E. (2008). Child psychosocial adjustment and parenting in families affected by maternal HIV/AIDS. Journal of Child and Family Studies, 17(6), 823–838.

    Article  Google Scholar 

  49. Veit, C. T., & Ware, J. E. (1983). The structure of psychological distress and well-being in general populations. Journal of consulting and clinical psychology, 51(5), 730.

    Article  Google Scholar 

  50. Williams, L. D., Korobchuk, A., Pavlitina, E., Nikolopoulos, G. K., Skaathun, B., Schneider, J., Kostaki, E. G., Smyrnov, P., Vasylyeva, T. I., Psichogiou, M., Paraskevis, D., Morgan, E., Hadjikou, A., Downing, Jr., M. J., Hatzakis, A., & Friedman, S. R. (2019). Experiences of stigma and support reported by participants in a network intervention to reduce HIV transmission in Athens, Greece; Odessa, Ukraine; and Chicago, Illinois. AIDS and Behavior, 23, 1210–1224.

    Article  Google Scholar 

  51. World Health Organization [WHO]. (2018). HIV/AIDS: Fact sheet. http://www.who.int/mediacentre/factsheets/fs360/en/

Download references

Author Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by S.J.K., A.R., N.G., L.A., and L.C. The first draft of the manuscript was written by S.J.K., A.R., N.G., L.A., and L.C., and all authors commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.

Funding

Research reported in this manuscript was supported by the National Institute of Mental Health by Grant Numbers 5R01MH094233 (PI: L.P.A.), 5R01MH094148 (PI: M.T.S., and F31MH109370 (PI: N.M.G.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Sae-Jin Kim.

Ethics declarations

Ethics Approval and Consent to Participate

The Institutional Review Boards of Georgia State University and the University of California, Los Angeles, approved this study in accordance with ethical standards of the institutional and national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. In this study, we obtained informed consent and assent from all adult and child participants, respectively.

Consent to Publish

All adult and child participants in this study signed informed consent and assent, respectively, regarding the publication of their deidentified data.

Conflict of Interest

The authors declare no competing interests.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Kim, SJ., Robbertz, A., Goodrum, N.M. et al. Maternal HIV Stigma and Child Adjustment: Qualitative and Quantitative Perspectives. J Child Fam Stud 30, 2402–2412 (2021). https://doi.org/10.1007/s10826-021-02034-x

Download citation

Keywords

  • HIV
  • stigma
  • child adjustment
  • parent-child relationship
  • mixed methods