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“Was it a Mistake to Tell Others That You are Infected with HIV?”: Factors Associated with Regret Following HIV Disclosure Among People Living with HIV in Five Countries (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). Results from a Community-Based Research

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Abstract

This study examined regret following HIV serostatus disclosure and associated factors in under-investigated contexts (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). A community-based cross-sectional study was implemented by a mixed consortium [researchers/community-based organizations (CBO)]. Trained CBO members interviewed 1,500 PLHIV in contact with CBOs using a 125-item questionnaire. A weighted multivariate logistic regression was performed. Among the 1,212 participants included in the analysis, 290 (23.9 %) declared that disclosure was a mistake. Female gender, percentage of PLHIV’s network knowing about one’s seropositivity from a third party, having suffered rejection after disclosure, having suffered HIV-based discrimination at work, perceived seriousness of infection score, daily loneliness, property index and self-esteem score were independently associated with regret. Discrimination, as well as individual characteristics and skills may affect the disclosure experience. Interventions aiming at improving PLHIV skills and reducing their social isolation may facilitate the disclosure process and avoid negative consequences.

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References

  1. Deribe K, Woldemichael K, Wondafrash M, Haile A, Amberbir A. Disclosure experience and associated factors among HIV positive men and women clinical service users in southwest Ethiopia. BMC Public Health. 2008;8:81.

    Article  PubMed Central  PubMed  Google Scholar 

  2. Elford J, Ibrahim F, Bukutu C, Anderson J. Disclosure of HIV status: the role of ethnicity among people living with HIV in London. J Acquir Immune Defic Syndr. 2008;47(4):514–21.

    Article  PubMed  Google Scholar 

  3. Babcock JH. Involving family and significant others in acute care. In: Aronstein DM, Thompson BJ, editors. HIV and social work. Binghamton: Harrington; 1998. p. 101–8.

    Google Scholar 

  4. Hays RB, McKusick L, Pollack L, Hilliard R, Hoff C, Coates TJ. Disclosing HIV seropositivity to significant others. AIDS. 1993;7(3):425–31.

    Article  CAS  PubMed  Google Scholar 

  5. Kalichman SC. Understanding AIDS: a guide for mental health professionals. Washington, DC: Am Psychol Assoc; 1995.

    Book  Google Scholar 

  6. Black BP, Miles MS. Calculating the risks and benefits of disclosure in African American women who have HIV. J Obstet Gynecol Neonatal Nurs. 2002;31(6):688–97.

    Article  PubMed  Google Scholar 

  7. Serovich JM. A test of two HIV disclosure theories. AIDS Educ Prev. 2001;13(4):355–64.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  8. Serovich JM, Lim JY, Mason TL. A retest of two HIV disclosure theories: the women’s story. Health Soc Work. 2008;33(1):23–31.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Valle M, Levy J. Weighing the consequences: self-disclosure of HIV-positive status among African American injection drug users. Health Educ Behav. 2009;36(1):155–66.

    Article  PubMed  Google Scholar 

  10. Hutton VE, Misajon R, Collins FE. Subjective wellbeing and “felt” stigma when living with HIV. Qual Life Res. 2013;22(1):65–73.

    Article  PubMed  Google Scholar 

  11. Medley A, Garcia-Moreno C, McGill S, Maman S. Rates, barriers and outcomes of HIV serostatus disclosure among women in developing countries: implications for prevention of mother-to-child transmission programmes. Bull World Health Organ. 2004;82(4):299–307.

    PubMed Central  PubMed  Google Scholar 

  12. Spire B, Carrieri P, Sopha P, et al. Adherence to antiretroviral therapy in patients enrolled in a comprehensive care program in Cambodia: a 24-month follow-up assessment. Antivir Ther. 2008;13(5):697–703.

    PubMed  Google Scholar 

  13. Waddell EN, Messeri PA. Social support, disclosure, and use of antiretroviral therapy. AIDS Behav. 2006;10(3):263–72.

    Article  PubMed  Google Scholar 

  14. Holt R, Court P, Vedhara K, Nott KH, Holmes J, Snow MH. The role of disclosure in coping with HIV infection. AIDS Care. 1998;10(1):49–60.

    Article  CAS  PubMed  Google Scholar 

  15. Kalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003;26(4):315–32.

    Article  PubMed  Google Scholar 

  16. Bogart LM, Landrine H, Galvan FH, Wagner GJ, Klein DJ. Perceived discrimination and physical health among HIV-positive Black and Latino men who have sex with men. AIDS Behav. 2013;17(4):1431–41.

    Article  PubMed Central  PubMed  Google Scholar 

  17. Marks G, Burris S, Peterman TA. Reducing sexual transmission of HIV from those who know they are infected: the need for personal and collective responsibility. AIDS. 1999;13(3):297–306.

    Article  CAS  PubMed  Google Scholar 

  18. Olley BO, Seedat S, Stein DJ. Self-disclosure of HIV serostatus in recently diagnosed patients with HIV in South Africa. Afr J Reprod Health. 2004;8(2):71–6.

    Article  CAS  PubMed  Google Scholar 

  19. Loubiere S, Peretti-Watel P, Boyer S, Blanche J, Abega SC, Spire B. HIV disclosure and unsafe sex among HIV-infected women in Cameroon: Results from the ANRS-EVAL study. Soc Sci Med. 2009;69(6):885–91.

    Article  PubMed  Google Scholar 

  20. Marks G, Crepaz N. HIV-positive men’s sexual practices in the context of self-disclosure of HIV status. J Acquir Immune Defic Syndr. 2001;27(1):79–85.

    Article  CAS  PubMed  Google Scholar 

  21. Sullivan KM. Male self-disclosure of HIV-positive serostatus to sex partners: a review of the literature. J Assoc Nurses AIDS Care. 2005;16(6):33–47.

    Article  PubMed  Google Scholar 

  22. Chaudoir SR, Fisher JD, Simoni JM. Understanding HIV disclosure: a review and application of the disclosure processes model. Soc Sci Med. 2011;72(10):1618–29.

    Article  PubMed Central  PubMed  Google Scholar 

  23. Serovich JM, McDowell TL, Grafsky EL. Women’s report of regret of hiv disclosure to family, friends and sex partners. AIDS Behav. 2008;12(2):227–31.

    Article  PubMed Central  PubMed  Google Scholar 

  24. Serovich JM, Mason TL, Bautista D, Toviessi P. Gay men’s report of regret of HIV disclosure to family, friends, and sex partners. AIDS Educ Prev. 2006;18(2):132–8.

    Article  PubMed Central  PubMed  Google Scholar 

  25. Serovich JM, Grafsky EL, Reed S. Comparing regret of disclosing HIV versus sexual orientation information by MSM. AIDS Care. 2010;22(9):1052–9.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Murphy DA, Roberts KJ, Hoffman D. Regrets and advice from mothers who have disclosed their HIV+ serostatus to their young children. J Child Fam Stud. 2003;12(3):307–18.

    Article  Google Scholar 

  27. Henry E., Verde L., Cissé M et al: Linking research and intervention: a community research program on serostatus disclosure in five countries: Mali, Morocco, DRC, Ecuador and Romania. XIX International AIDS Conference, Washington, 2012 [abstract MOPE398].

  28. Lazăr F, Verde L, Henry E, et al. Satisfaction with sexual life in people living with HIV in Romania, together with associated individual and social factors. AIDS Care. 2014;26(Suppl 1):S65–9.

    Article  PubMed  Google Scholar 

  29. Mosavel M, Simon C, van Stade D, Buchbinder M. Community-based participatory research (CBPR) in South Africa: engaging multiple constituents to shape the research question. Soc Sci Med. 2005;61(12):2577–87.

    Article  PubMed Central  PubMed  Google Scholar 

  30. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health. 1998;19:173–202.

    Article  CAS  PubMed  Google Scholar 

  31. Loukid M, Abadie A, Henry E, et al. Factors associated with HIV status disclosure to one’s steady sexual partner in PLHIV in Morocco. J Community Health. 2014;39(1):50–9.

    Article  PubMed  Google Scholar 

  32. Gadermann AM, Guhn M, Zumbo BD. Estimating ordinal reliability for Likert-type and ordinal item response data: a conceptual, empirical, and practical guide. Pract Assess Res Eval. 2012;17(3). http://pareonline.net/pdf/v17n3.pdf. Accessed 5 April 2014.

  33. Moss-Morris R, Weinman J, Petrie KJ, Horne R, Cameron LD, Buick D. The revised illness perception questionnaire (IPQ-R). Psychol Health. 2002;17:1–16.

    Article  Google Scholar 

  34. Rosenberg M. Society and the adolescent self-image. Princeton: Princeton University Press; 1965.

    Google Scholar 

  35. Martinot D. Connaissance de soi et estime de soi : ingrédients pour la réussite scolaire. Rev Sci Educ. 2001;27(3):483–502.

    Google Scholar 

  36. Schwarzer R, Jerusalem M. Generalized self-efficacy scale. In: Weinman J, Wright S, Johnston M, editors. Measures in health psychology: a user’s portfolio. Causal and control beliefs. Windsor: NFER-NELSON; 1995. p. 35–7.

    Google Scholar 

  37. Hosmer DW, Lemeshow S. Applied logistic regression. New-York: Wiley; 2000.

    Book  Google Scholar 

  38. Dima AL, Stutterheim SE, Lyimo R, de Bruin M. Advancing methodology in the study of HIV status disclosure: the importance of considering disclosure target and intent. Soc Sci Med. 2014;108:166–74.

    Article  PubMed  Google Scholar 

  39. Connell RW. Gender and power: society, the person and sexual politics. Palo Alto: Stanford University Press; 1987.

    Google Scholar 

  40. Gupta GR. Gender, sexuality, and HIV/AIDS: the what, the why, and the how. 2001. pp. 6–12. http://www.popline.org/node/179021#sthash.V80qnnNF.dpuf. Accessed 25 March 2014.

  41. Weiss E, Whelan D, Gupta GR. Gender, sexuality and HIV: making a difference in the lives of young women in developing countries. Sex Relatsh Ther. 2000;15(3):233–45.

    Article  Google Scholar 

  42. Gupta GR. How men’s power over women fuels the HIV epidemic. BMJ. 2002;324(7331):183–4.

    Article  PubMed Central  PubMed  Google Scholar 

  43. Blanc AK. The effect of power in sexual relationships on sexual and reproductive health: an examination of the evidence. Stud Fam Plann. 2001;32(3):189–213.

    Article  CAS  PubMed  Google Scholar 

  44. Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. Am J Public Health. 2011;101(6):1011–23.

    Article  PubMed Central  PubMed  Google Scholar 

  45. Grodensky CA, Golin CE, Jones C, et al. “I Should Know Better”: the roles of relationships, spirituality, disclosure, stigma, and shame for older women living with HIV seeking support in the South. J Assoc Nurses AIDS Care. 2014;. doi:10.1016/j.jana.2014.01.005.

    PubMed  Google Scholar 

  46. Lowther K, Selman L, Harding R, Higginson IJ. Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. Int J Nurs Stud. 2014;51(8):1171–89.

    Article  PubMed  Google Scholar 

  47. Florom-Smith AL, De Santis JP. Exploring the concept of HIV-related stigma. Nurs Forum. 2012;47(3):153–65.

    Article  PubMed Central  PubMed  Google Scholar 

  48. Colbert AM, Kim KH, Sereika SM, Erlen JA. An examination of the relationships among gender, health status, social support, and HIV-related stigma. J Assoc Nurses AIDS Care. 2010;21(4):302–13.

    Article  PubMed Central  PubMed  Google Scholar 

  49. Asiedu GB, Myers-Bowman KS. Gender differences in the experiences of HIV/AIDS-related stigma: a qualitative study in Ghana. Health Care Women Int. 2014;35(7–9):703–27.

    Article  PubMed  Google Scholar 

  50. Beaulieu M, Otis J, Blais M, et al. A model of quality of life of women living with HIV. J HIV AIDS Soc Serv. 2012;11(3):210–32.

    Article  Google Scholar 

  51. Zamudio-Haas S, Mudekunye-Mahaka I, Lambdin BH, Dunbar MS. If, when and how to tell: a qualitative study of HIV disclosure among young women in Zimbabwe. Reprod Health Matters. 2012;20(39 Suppl):18–26.

    Article  PubMed  Google Scholar 

  52. King EB, Botsford WE. Managing pregnancy disclosures: understanding and overcoming the challenges of expectant motherhood at work. Hum Resour Manag Rev. 2009;19(4):314–23.

    Article  Google Scholar 

  53. Ezegwui HU, Nwogu-Ikojo EE, Enwereji JO, Dim CC. HIV serostatus disclosure pattern among pregnant women in Enugu, Nigeria. J Biosoc Sci. 2009;41(6):789–98.

    Article  CAS  PubMed  Google Scholar 

  54. Orne-Gliemann J, Tchendjou P, Miric M et al. Conseil prénatal pour le VIH orienté vers le couple dans quatre pays à faible et moyenne prévalences: acceptabilité et faisabilité. In: Desclaux A, Msellati P, Sow K. Les femmes à l’épreuve du VIH dans les pays du Sud, Genre et accès universel à la prise en charge. Paris: ANRS, Collection Sciences Sociales et Sida; 2011.

  55. Steward WT, Herek GM, Ramakrishna J, et al. HIV-related stigma: adapting a theoretical framework for use in India. Soc Sci Med. 2008;67(8):1225–35.

    Article  PubMed Central  PubMed  Google Scholar 

  56. Gaskins SW, Payne Foster P, Sowell RL, Lewis TL, Gardner A, Parton JM. Making decisions: the process of HIV disclosure for rural African American men. Am J Mens Health. 2012;6(6):442–52.

    Article  PubMed  Google Scholar 

  57. 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 

  58. Bashir S. HIV/AIDS stigma at the workplace: exploratory findings from Pakistan. SAHARA J. 2011;8(3):156–61.

    Article  PubMed  Google Scholar 

  59. Dray-Spira R, Lert F. VESPA Study Group. Living and working with HIV in France in 2003: results from the ANRS-EN12-VESPA Study. AIDS. 2007;21(Suppl 1):S29–36.

    Article  PubMed  Google Scholar 

  60. Rodkjaer L, Sodemann M, Ostergaard L, Lomborg K. Disclosure decisions: HIV-positive persons coping with disease-related stressors. Qual Health Res. 2011;21(9):1249–59.

    Article  PubMed  Google Scholar 

  61. Bury M. Chronic illness as biographical disruption. Sociol Health Illn. 1982;4(2):167–82.

    Article  CAS  PubMed  Google Scholar 

  62. Bury M. The sociology of chronic illness: a review of research and prospects. Sociol Health Illn. 1991;13(4):451–68.

    Article  Google Scholar 

  63. Charmaz K. Struggling for a self: identity levels of the chronically ill. In: Roth JA, Conrad P, editors. Research in the sociology of health care: Vol. 6. The experience and management of chronic illness. Greenwich, CT: JAI Press; 1987. pp. 283–321.

  64. Galletly CL, Pinkerton SD, DiFranceisco W. A quantitative study of Michigan’s criminal HIV exposure law. AIDS Care. 2012;24(2):174–9.

    PubMed Central  PubMed  Google Scholar 

  65. Fuhrer R, Rouillon F. La version française de l’échelle CES-D (Center for Epidemiologic Studies-Depression Scale) Description et traduction de l’échelle d’auto-évaluation. Psychiatr Psychobiol. 1989;4:163–6.

    Google Scholar 

  66. Bates I, Fenton C, Gruber J, et al. Vulnerability to malaria, tuberculosis, and HIV/AIDS infection and disease. Part 1: determinants operating at individual and household level. Lancet Infect Dis. 2004;4(5):267–77.

    Article  PubMed  Google Scholar 

  67. Booysen Fle R, Summerton J. Poverty, risky sexual behaviour, and vulnerability to HIV infection: evidence from South Africa. J Health Popul Nutr. 2002;20(4):285–8.

    PubMed  Google Scholar 

  68. Ncama BP. Acceptance and disclosure of HIV status through an integrated community/home-based care program in South Africa. Int Nurs Rev. 2007;54(4):391–7.

    Article  CAS  PubMed  Google Scholar 

  69. Otis J, Yattassaye A, Henry E, et al. Effects of an empowerment program on the ability of women living with HIV in Mali to manage decisions regarding whether or not to disclose HIV status. XIX International AIDS Conference. Washington, 2012 [abstract MOPE502].

  70. ARCAD-SIDA, Coalition PLUS. Gundo-So : la chambre des confidences/Une expérience communautaire sur la question du partage du statut sérologique chez les femmes vivant avec le VIH au Mali. http://www.coalitionplus.org/wordpress/wp-content/uploads/2014/12/Brochure_Gundo-So_finale.pdf. Accessed 3 Dec 2014.

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Acknowledgments

This study was made possible thanks to the organization “Coalition Internationale Sida” and to funding from the French Agency of AIDS Research (ANRS) and Sidaction. We thank all the PLHIV who agreed to participate to this study, and the partners of the other countries involved in the Partages study for their contribution to the success of the study at the local and international levels. Finally, we would like to thank Jude Sweeney for the English reviewing of this manuscript. ANRS (French Agency of AIDS research) and Sidaction provided funding for the study, they were not involved in the study design or implementation.

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There is no conflict of interest to declare.

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Authors and Affiliations

  1. Coalition Internationale Sida, Pantin, France

    Emilie Henry & Adeline Bernier

  2. Faculty of Sociology and Social Work, Bucharest University, Bucharest, Romania

    Florin Lazar

  3. ACS/AMO CONGO, Kinshasa, Democratic Republic of the Congo

    Gaspard Matamba

  4. Semlalia Faculty of Sciences, University Cadi Ayyad, Marrakech, Morocco

    Mohamed Loukid

  5. Kimirina, Quito, Ecuador

    Cesar Bonifaz

  6. SEREFO/CEREFO, University of Sciences, Techniques and Technologies of Bamako, Bamako, Mali

    Samba Diop

  7. CReCES, UQAM, Montreal, Canada

    Joanne Otis

  8. GRePS, University Lumière Lyon 2, Bron, France

    Marie Préau

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  1. Emilie Henry
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Correspondence to Adeline Bernier.

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Henry, E., Bernier, A., Lazar, F. et al. “Was it a Mistake to Tell Others That You are Infected with HIV?”: Factors Associated with Regret Following HIV Disclosure Among People Living with HIV in Five Countries (Mali, Morocco, Democratic Republic of the Congo, Ecuador and Romania). Results from a Community-Based Research. AIDS Behav 19, 311–321 (2015). https://doi.org/10.1007/s10461-014-0976-8

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