Skip to main content

Self-Stigma Reduction Interventions for People Living with HIV/AIDS and Their Families: A Systematic Review

AIDS and Behavior volume 23, pages 707–741 (2019)Cite this article

Abstract

Stigma is a primary concern for people living with human immunodeficiency virus (HIV)/AIDS (PLWHA), and has great impact on their and their family members’ health. While previous reviews have largely focused on the public stigma, this systematic review aims to evaluate the impact of HIV/acquired immunodeficiency syndrome (AIDS)-related self-stigma reduction interventions among PLWHA and their families. A literature search using eight databases found 23 studies meeting the inclusion criteria. Five types of intervention approaches were identified: (1) psycho-educational intervention, (2) supportive intervention for treatment adherence (antiretroviral therapy), (3) psychotherapy intervention, (4) narrative intervention, and (5) community participation intervention. Overall, the reviewed articles suggested a general trend of promising effectiveness of these interventions for PLWHA and their family members. Psycho-educational interventions were the main approach. The results highlighted the need for more interventions targeting family members of PLWHA, and mixed-methods intervention studies.

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

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Fig. 1

References

  1. Erving G. In: Jenkins JH, Carpenter E, editors. Stigma: notes on a spoiled identity. Englewood Cliffs: Prentice-Hall; 1963.

    Google Scholar 

  2. Mathiti V. Street life and the construction of social problems. In: Ratele K, Duncan N, editors. Social psychology: identities and relationships. Cape Town: UTC Press; 2003. p. 336–52.

    Google Scholar 

  3. Corrigan P. How stigma interferes with mental health care. Am Psychol. 2004;59(7):614.

    Article  PubMed  Google Scholar 

  4. Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health. 2013;103(5):813–21.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Drew N, Funk M, Tang S, Lamichhane J, Chávez E, Katontoka S, et al. Human rights violations of people with mental and psychosocial disabilities: an unresolved global crisis. Lancet. 2011;378(9803):1664–75.

    Article  PubMed  Google Scholar 

  6. Feldman DB, Crandall CS. Dimensions of mental illness stigma: what about mental illness causes social rejection? J Soc Clin Psychol. 2007;26(2):137–54.

    Article  Google Scholar 

  7. Ehrenkranz N, Rubini J, Gunn R, Horsburgh C, Collins T, Hasiba U, et al. Pneumocystis carinii pneumonia among persons with hemophilia A. Morb Mortal Wkly Rep. 1982;31(2):365–7.

    Google Scholar 

  8. Masoudnia E. Public perceptions about HIV/AIDS and discriminatory attitudes toward people living with acquired immunodeficiency syndrome in Iran. SAHARA J Soc Asp HIV/AIDS Res Alliance. 2015;12(1):116–22.

    Article  Google Scholar 

  9. Jin H, Earnshaw VA, Wickersham JA, Kamarulzaman A, Desai MM, John J, et al. An assessment of health-care students’ attitudes toward patients with or at high risk for HIV: implications for education and cultural competency. AIDS Care. 2014;26(10):1223–8.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Chen J, Choe M, Chen S, Zhang S. The effects of individual- and community-level knowledge, beliefs, and fear on stigmatization of people living with HIV/AIDS in China. AIDS Care. 2007;19(5):666–73.

    Article  CAS  PubMed  Google Scholar 

  11. Sudha R, Vijay D, Lakshmi V. Awareness, attitudes, and beliefs of the general public towards HIV/AIDS in Hyderabad, a capital city from South India. Indian J Med Sci. 2005;59(7):307.

    Article  CAS  PubMed  Google Scholar 

  12. Houtsonen J, Kylmä J, Korhonen T, Välimäki M, Suominen T. University students’ perception of people living with HIV/AIDS: discomfort, fear, knowledge and a willingness to care. Coll Stud J. 2014;48(3):534–47.

    Google Scholar 

  13. Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Holzemer WL, Uys L, Makoae L, Stewart A, Phetlhu R, Dlamini PS, et al. A conceptual model of HIV/AIDS stigma from five African countries. J Adv Nurs. 2007;58(6):541–51.

    Article  PubMed  Google Scholar 

  15. Mhode M, Nyamhanga T. Experiences and impact of stigma and discrimination among people on antiretroviral therapy in Dar es Salaam: a qualitative perspective. AIDS Res Treat. 2016;2016:1–12.

    Article  CAS  Google Scholar 

  16. Liu Y, Canada K, Shi K, Corrigan P. HIV-related stigma acting as predictors of unemployment of people living with HIV/AIDS. AIDS Care. 2012;24(1):129–35.

    Article  PubMed  Google Scholar 

  17. Dlamini PS, Kohi TW, Uys LR, Phetlhu RD, Chirwa ML, Naidoo JR, et al. Verbal and physical abuse and neglect as manifestations of HIV/AIDS stigma in five African countries. Public Health Nurs. 2007;24(5):389–99.

    Article  PubMed  Google Scholar 

  18. Emlet CA. “You’re awfully old to have this disease”: experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS. Gerontologist. 2006;46(6):781–90.

    Article  PubMed  Google Scholar 

  19. Nyblade LC. Measuring HIV stigma: existing knowledge and gaps. Psychol Health Med. 2006;11(3):335–45.

    Article  PubMed  Google Scholar 

  20. Van Brakel WH. Measuring health-related stigma—a literature review. Psychol Health Med. 2006;11(3):307–34.

    Article  PubMed  Google Scholar 

  21. Turan JM, Nyblade L. HIV-related stigma as a barrier to achievement of global PMTCT and maternal health goals: a review of the evidence. AIDS Behav. 2013;17(7):2528–39.

    Article  PubMed  Google Scholar 

  22. Musheke M, Ntalasha H, Gari S, Mckenzie O, Bond V, Martin-Hilber A, et al. A systematic review of qualitative findings on factors enabling and deterring uptake of HIV testing in Sub-Saharan Africa. BMC Public Health. 2013;13(1):220.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Darlington CK, Hutson SP. Understanding HIV-related stigma among women in the Southern United States: a literature review. AIDS Behav. 2017;21(1):12–26.

    Article  PubMed  Google Scholar 

  24. Rueda S, Mitra S, Chen S, Gogolishvili D, Globerman J, Chambers L, et al. Examining the associations between HIV-related stigma and health outcomes in people living with HIV/AIDS: a series of meta-analyses. BMJ Open. 2016;6(7):e011453.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, et al. Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. J Int AIDS Soc. 2013;16:18640.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Lee RS, Kochman A, Sikkema KJ. Internalized stigma among people living with HIV-AIDS. AIDS Behav. 2002;6(4):309–19.

    Article  Google Scholar 

  27. Simbayi LC, Kalichman S, Strebel A, Cloete A, Henda N, Mqeketo A. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Soc Sci Med. 2007;64(9):1823–31.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Turan B, Budhwani H, Fazeli PL, Browning WR, Raper JL, Mugavero MJ, et al. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017;21(1):283–91.

    Article  PubMed  PubMed Central  Google Scholar 

  29. SeyedAlinaghi S, Paydary K, Kazerooni PA, Hosseini M, Sedaghat A, Emamzadeh-Fard S, et al. Evaluation of stigma index among people living with HIV/AIDS (PLWHA) in six cities in Iran. Thrita. 2013;2(4):69–75.

    Article  Google Scholar 

  30. Ogunmefun C, Gilbert L, Schatz E. Older female caregivers and HIV/AIDS-related secondary stigma in rural South Africa. J Cross Cult Gerontol. 2011;26(1):85–102.

    Article  PubMed  Google Scholar 

  31. Saengtienchai C, Knodel J. Parental caregiving to adult children with AIDS: a qualitative analysis of circumstances and consequences in Thailand. PSC research report; 2001.

  32. Wight RG, Aneshensel CS, Murphy DA, Miller-Martinez D, Beals KP. Perceived HIV stigma in AIDS caregiving dyads. Soc Sci Med. 2006;62(2):444–56.

    Article  PubMed  Google Scholar 

  33. Wight RG, Beals K, Miller-Martinez D, Murphy D, Aneshensel C. HIV-related traumatic stress symptoms in AIDS caregiving family dyads. AIDS Care. 2007;19(7):901–9.

    Article  CAS  PubMed  Google Scholar 

  34. Demmer C. Experiences of families caring for an HIV-infected child in KwaZulu-Natal, South Africa: an exploratory study. AIDS Care. 2011;23(7):873–9.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Grossman CI, Stangl AL. Global action to reduce HIV stigma and discrimination. J Int AIDS Soc. 2013;16:18881.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Haghdoost A, Karamouzian M. Zero new HIV infections, zero discrimination, and zero AIDS-related deaths: feasible goals or ambitious visions on the occasion of the world AIDS day? Int J Prev Med. 2012;3(12):819.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Joint United Nations Programme on HIV/AIDS. UNAIDS Strategy 2016–2021; 2016.

  38. Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Educ Prev. 2003;15(1):49–69.

    Article  PubMed  Google Scholar 

  39. Sengupta S, Banks B, Jonas D, Miles MS, Smith GC. HIV interventions to reduce HIV/AIDS stigma: a systematic review. AIDS Behav. 2011;15(6):1075–87.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? J Int AIDS Soc. 2013;16:18734.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Mak WW, Mo PK, Ma GY, Lam MY. Meta-analysis and systematic review of studies on the effectiveness of HIV stigma reduction programs. Soc Sci Med. 2017;188:30–40.

    Article  PubMed  Google Scholar 

  42. Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377–84.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  43. O’Connor SR, Tully MA, Ryan B, Bradley JM, Baxter GD, McDonough SM. Failure of a numerical quality assessment scale to identify potential risk of bias in a systematic review: a comparison study. BMC Res Notes. 2015;8(1):224.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Morris SB. Estimating effect sizes from pretest–posttest-control group designs. Organ Res Methods. 2008;11(2):364–86.

    Article  Google Scholar 

  45. Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: Erlbaum; 1988.

    Google Scholar 

  46. Skinta MD, Lezama M, Wells G, Dilley JW. Acceptance and compassion-based group therapy to reduce HIV stigma. Cogn Behav Pract. 2015;22(4):481–90.

    Article  Google Scholar 

  47. Uys L, Chirwa M, Kohi T, Greeff M, Naidoo J, Makoae L, et al. Evaluation of a health setting-based stigma intervention in five African countries. AIDS Patient Care STDs. 2009;23(12):1059–66.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Pomeroy EC, Rubin A, Laningham VL, Walker RJ. “Straight Talk”: the effectiveness of a psychoeducational group intervention for heterosexuals with HIV/AIDS. Res Soc Work Pract. 1997;7(2):149–64.

    Article  Google Scholar 

  49. Abel E. Women with HIV and stigma. Fam Community Health J Health Promot Maint. 2007;30(1, Suppl):S104–6.

    Google Scholar 

  50. Masquillier C, Wouters E, Mortelmans D, Roux Booysen F. The impact of community support initiatives on the stigma experienced by people living with HIV/AIDS in South Africa. AIDS Behav. 2015;19(2):214–26.

    Article  PubMed  Google Scholar 

  51. Bhatta DN, Liabsuetrakul T. Efficacy of a social self-value empowerment intervention to improve quality of life of HIV infected people receiving antiretroviral treatment in Nepal: a randomized controlled trial. AIDS Behav. 2017;21(6):1620–31.

    Article  PubMed  Google Scholar 

  52. Hosek SG, Lemos D, Harper GW, Telander K. Evaluating the acceptability and feasibility of Project ACCEPT: an intervention for youth newly diagnosed with HIV. AIDS Educ Prev. 2011;23(2):128–44.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Rao D, Desmond M, Andrasik M, Rasberry T, Lambert N, Cohn S, et al. Feasibility, acceptability and initial efficacy of the ‘Unity workshop’: an internalized stigma reduction intervention for African American women living with HIV. J Int AIDS Soc. 2012;15:172.

    Google Scholar 

  54. Smith Fawzi MC, Eustache E, Oswald C, Louis E, Surkan PJ, Scanlan F, et al. Psychosocial support intervention for HIV-affected families in Haiti: implications for programs and policies for orphans and vulnerable children. Soc Sci Med. 2012;74(10):1494–503.

    Article  PubMed  Google Scholar 

  55. Tshabalala J, Visser M. Developing a cognitive behavioural therapy model to assist women to deal with HIV and stigma. S Afr J Psychol. 2011;41(1):17–28.

    Article  Google Scholar 

  56. Miles MS, Holditch-Davis D, Eron J, Black BP, Pedersen C, Harris DA. An HIV self-care symptom management intervention for African American mothers. Nurs Res. 2003;52(6):350–60.

    Article  PubMed  Google Scholar 

  57. Nyamathi A, Ekstrand M, Salem BE, Sinha S, Ganguly KK, Leake B. Impact of Asha intervention on stigma among rural Indian women with AIDS. West J Nurs Res. 2013;35(7):867–83.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Nambiar D, Ramakrishnan V, Kumar P, Varma R, Balaji N, Rajendran J, et al. Knowledge, stigma, and behavioral outcomes among antiretroviral therapy patients exposed to Nalamdana’s radio and theater program in Tamil Nadu, India. AIDS Educ Prev. 2011;23(4):351–66.

    Article  PubMed  Google Scholar 

  59. Rounds KA, Galinsky MJ, Despard MR. Evaluation of telephone support groups for persons with HIV disease. Res Soc Work Pract. 1995;5(4):442–59.

    Article  Google Scholar 

  60. Barroso J, Relf MV, Williams MS, Arscott J, Moore ED, Caiola C, et al. A randomized controlled trial of the efficacy of a stigma reduction intervention for HIV-infected women in the Deep South. AIDS Patient Care STDs. 2014;28(9):489–98.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Gordon VL. Effectiveness of a time-limited psychoeducational group for cohabitating sero-negative partners and spouses of persons with HIV disease (immune deficiency). 1998.

  62. Pomeroy EC, Rubin A, Walker RJ. Effectiveness of a psychoeducational and task-centered group intervention for family members of people with AIDS. Soc Work Res. 1995;19(3):142–52.

    CAS  PubMed  Google Scholar 

  63. Apinundecha C, Laohasiriwong W, Cameron MP, Lim S. A community participation intervention to reduce HIV/AIDS stigma, Nakhon Ratchasima Province, northeast Thailand. AIDS Care. 2007;19(9):1157–65.

    Article  CAS  PubMed  Google Scholar 

  64. Bhana A, Mellins CA, Petersen I, Alicea S, Myeza N, Holst H, et al. The VUKA family program: piloting a family-based psychosocial intervention to promote health and mental health among HIV infected early adolescents in South Africa. AIDS Care. 2014;26(1):1–11.

    Article  PubMed  Google Scholar 

  65. Echenique M, Illa L, Saint-Jean G, Avellaneda VB, Sanchez-Martinez M, Eisdorfer C. Impact of a secondary prevention intervention among HIV-positive older women. AIDS Care. 2013;25(4):443–6.

    Article  PubMed  Google Scholar 

  66. Kaai S, Bullock S, Sarna A, Chersich M, Luchters S, Geibel S, et al. Perceived stigma among patients receiving antiretroviral treatment: a prospective randomised trial comparing an m-DOT strategy with standard-of-care in Kenya. SAHARA J J Soc Asp HIV/AIDS Res Alliance. 2010;7(2):62–70.

    Article  Google Scholar 

  67. Muñoz M, Finnegan K, Zeladita J, Caldas A, Sanchez E, Callacna M, et al. Community-based DOT-HAART accompaniment in an urban resource-poor setting. AIDS Behav. 2010;14(3):721–30.

    Article  PubMed  Google Scholar 

  68. Abel E, Rew L, Gortner EM, Delville CL. Cognitive reorganization and stigmatization among persons with HIV. J Adv Nurs. 2004;47(5):510–25.

    Article  PubMed  Google Scholar 

  69. Mittal D, Sullivan G, Chekuri L, Allee E, Corrigan PW. Empirical studies of self-stigma reduction strategies: a critical review of the literature. Psychiatr Serv. 2012;63(10):974–81.

    Article  PubMed  Google Scholar 

  70. Livingston JD, Milne T, Fang ML, Amari E. The effectiveness of interventions for reducing stigma related to substance use disorders: a systematic review. Addiction. 2012;107(1):39–50.

    Article  PubMed  PubMed Central  Google Scholar 

  71. UNAIDS. Development of a tool to measure stigma and discrimination experienced by people living with HIV 2008.

  72. Loutfy MR, Logan Kennedy V, Mohammed S, Wu W, Muchenje M, Masinde K, et al. Recruitment of HIV-positive women in research: discussing barriers, facilitators, and research personnel’s knowledge. Open AIDS J. 2014;8:58.

    Article  PubMed  PubMed Central  Google Scholar 

  73. Zweben A, Fucito LM, O’Malley SS. Effective strategies for maintaining research participation in clinical trials. Drug Inf J. 2009;43(4):459–67.

    Article  Google Scholar 

  74. Callaghan M, Ford N, Schneider H. A systematic review of task-shifting for HIV treatment and care in Africa. Hum Resour Health. 2010;8(1):8.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Stahl ST, Rodakowski J, Saghafi EM, Park M, Reynolds CF, Dew MA. Systematic review of dyadic and family-oriented interventions for late-life depression. Int J Geriatr Psychiatry. 2016;31(9):963–73.

    Article  PubMed  PubMed Central  Google Scholar 

  76. Fan X, Konold T. Statistical significance versus effect size. 2010. https://doi.org/10.1016/B978-0-08-044894-7.01368-3.

  77. Hattie J. Visible learning for teachers: maximizing impact on learning. London: Routledge; 2012.

    Book  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. School of Nursing, The Hong Kong Polytechnic University, Hung Hom, GH 525, Kowloon, Hong Kong, China

    Polly H. X. Ma, Zenobia C. Y. Chan & Alice Yuen Loke

Authors
  1. Polly H. X. Ma
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Zenobia C. Y. Chan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Alice Yuen Loke
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alice Yuen Loke.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

This article does not contain any studies with human participants performed by any of the authors.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary material 2 (DOCX 19 kb)

Supplementary material 1 (DOCX 14 kb)

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Ma, P.H.X., Chan, Z.C.Y. & Loke, A.Y. Self-Stigma Reduction Interventions for People Living with HIV/AIDS and Their Families: A Systematic Review. AIDS Behav 23, 707–741 (2019). https://doi.org/10.1007/s10461-018-2304-1

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-018-2304-1

Keywords

  • Stigma
  • Self-stigma
  • HIV
  • AIDS
  • PLWHA