Skip to main content
Top
Published in: BMC Public Health 1/2018

Open Access 01-12-2018 | Research article

Theorizing the complexity of HIV disclosure in vulnerable populations: a grounded theory study

Authors: Subash Thapa, Karin Hannes, Anne Buve, Shivani Bhattarai, Catharina Mathei

Published in: BMC Public Health | Issue 1/2018

Login to get access

Abstract

Background

HIV disclosure is an important step in delivering the right care to people. However, many people with an HIV positive status choose not to disclose. This considerably complicates the delivery of adequate health care.

Methods

We conducted a grounded theory study to develop a theoretical model explaining how local contexts impact on HIV disclosure and what the mechanisms are that determine whether people choose to disclose or not. We conducted in-depth interviews among 23 people living with HIV, 8 health workers and 5 family and community members, and 1 community development worker in Achham, Nepal. Data were analysed using constant-comparative method, performing three levels of open, axial, and selective coding.

Results

Our theoretical model illustrates how two dominant systems to control HIV, namely a community self-coping and a public health system, independently or jointly, shape contexts, mechanisms and outcomes for HIV disclosure.

Conclusion

This theoretical model can be used in understanding processes of HIV disclosure in a community where HIV is concentrated in vulnerable populations and is highly stigmatized, and in determining how public health approaches would lead to reduced stigma levels and increased HIV disclosure rates.
Literature
1.
go back to reference WHO. Questions and answers on reporting, partner notification and disclosure of HIV serostatus and/or AIDS: public health and human rights implications. Geneva: World Health Organization; 1999. WHO. Questions and answers on reporting, partner notification and disclosure of HIV serostatus and/or AIDS: public health and human rights implications. Geneva: World Health Organization; 1999.
3.
go back to reference Chaudoir SR, Jd F, Simoni JM. Understanding HIV disclosure: a review and application of the disclosure processes model. Soc Sci Med. 2011;72(1873–5347 (Electronic)):1618–29.CrossRefPubMedPubMedCentral Chaudoir SR, Jd F, Simoni JM. Understanding HIV disclosure: a review and application of the disclosure processes model. Soc Sci Med. 2011;72(1873–5347 (Electronic)):1618–29.CrossRefPubMedPubMedCentral
5.
go back to reference Unaids: UNAIDS fact sheet on stigma and discrimination. ; 2003. Unaids: UNAIDS fact sheet on stigma and discrimination. ; 2003.
6.
go back to reference Simoni JM, Pantalone DW. Secrets and safety in the age of AIDS: does HIV disclosure lead to safer sex? Top HIV Med. 2004;12(4):109–18.PubMed Simoni JM, Pantalone DW. Secrets and safety in the age of AIDS: does HIV disclosure lead to safer sex? Top HIV Med. 2004;12(4):109–18.PubMed
7.
go back to reference Qiao S, Li X, Stanton B. Theoretical models of parental HIV disclosure: a critical review. AIDS Care. 2013;25(3):326–36.PubMed Qiao S, Li X, Stanton B. Theoretical models of parental HIV disclosure: a critical review. AIDS Care. 2013;25(3):326–36.PubMed
8.
10.
go back to reference Haberlen SA, Nakigozi G, Gray RH, Brahmbhatt H, Ssekasanvu J, Serwadda D, Nalugoda F, Kagaayi J, Wawer MJ. Antiretroviral therapy availability and HIV disclosure to spouse in Rakai, Uganda: a longitudinal population-based study. J Acquir Immune Defic Syndr. 2015;69(2):241–7.CrossRefPubMedPubMedCentral Haberlen SA, Nakigozi G, Gray RH, Brahmbhatt H, Ssekasanvu J, Serwadda D, Nalugoda F, Kagaayi J, Wawer MJ. Antiretroviral therapy availability and HIV disclosure to spouse in Rakai, Uganda: a longitudinal population-based study. J Acquir Immune Defic Syndr. 2015;69(2):241–7.CrossRefPubMedPubMedCentral
11.
go back to reference Pawson R, Greenhalgh T, Harvey G, Walshe K: Realist review--a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy 2005, 10 Suppl 1(1355–8196 (Print)):21-34. Pawson R, Greenhalgh T, Harvey G, Walshe K: Realist review--a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy 2005, 10 Suppl 1(1355–8196 (Print)):21-34.
12.
go back to reference Hudon A, Gervais MJ, Hunt M.FThe contribution of conceptual frameworks to knowledge translation The contribution of conceptual frameworks to knowledge translation interventions in physical therapy. Phys Ther. 2015;95(4):630-9. doi:https://doi.org/10.2522/ptj.20130483. Hudon A, Gervais MJ, Hunt M.FThe contribution of conceptual frameworks to knowledge translation The contribution of conceptual frameworks to knowledge translation interventions in physical therapy. Phys Ther. 2015;95(4):630-9. doi:https://​doi.​org/​10.​2522/​ptj.​20130483.
13.
go back to reference Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. 4th ed. Oliver's yard, City Road, London: Sage Publications Ltd; 2015. Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. 4th ed. Oliver's yard, City Road, London: Sage Publications Ltd; 2015.
14.
go back to reference Glaser BG, Strauss AL. The discovery of grounded theory. Int J Qual Methods. 1967;5:1–10. Glaser BG, Strauss AL. The discovery of grounded theory. Int J Qual Methods. 1967;5:1–10.
15.
go back to reference Department of Health Service. Annual report 2015/2016. Department of Health Service 2013/2014. Kathmandu: Ministry of Health and Population; 2015. Department of Health Service. Annual report 2015/2016. Department of Health Service 2013/2014. Kathmandu: Ministry of Health and Population; 2015.
16.
go back to reference National Planning c, United nations development p: Nepal Human development report. In.; 2014. National Planning c, United nations development p: Nepal Human development report. In.; 2014.
17.
go back to reference Thapa S, Bista N, Hannes K, Buve A, Vermandere M, Mathei C. Vulnerability of wives of Nepalese labor migrants to HIV infection: integrating quantitative and qualitative evidence. Women Health. 2015;56(1541–0331 (Electronic)):745–66.PubMed Thapa S, Bista N, Hannes K, Buve A, Vermandere M, Mathei C. Vulnerability of wives of Nepalese labor migrants to HIV infection: integrating quantitative and qualitative evidence. Women Health. 2015;56(1541–0331 (Electronic)):745–66.PubMed
18.
go back to reference New Era. Integrated biological and behavioral surveillance survey among male labor migrants in 11 districts in western and mid to far-western regions of Nepal round II. NEW ERA: Kathmandu, Nepal; 2008. New Era. Integrated biological and behavioral surveillance survey among male labor migrants in 11 districts in western and mid to far-western regions of Nepal round II. NEW ERA: Kathmandu, Nepal; 2008.
19.
go back to reference New Era. Integrated biological & behavioral surveillance survey among the wives of migrants in four districts of far-western Nepal round II. Nepal NEW ERA: Kathmandu; 2010. New Era. Integrated biological & behavioral surveillance survey among the wives of migrants in four districts of far-western Nepal round II. Nepal NEW ERA: Kathmandu; 2010.
20.
go back to reference Genberg BL, Hlavka Z, Konda KA, Maman S, Chariyalertsak S, Chingono A, Mbwambo J, Modiba P, Van Rooyen H, Celentano DD. A comparison of HIV/AIDS-related stigma in four countries: negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med. 2009;68(12):2279–87.CrossRefPubMedPubMedCentral Genberg BL, Hlavka Z, Konda KA, Maman S, Chariyalertsak S, Chingono A, Mbwambo J, Modiba P, Van Rooyen H, Celentano DD. A comparison of HIV/AIDS-related stigma in four countries: negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med. 2009;68(12):2279–87.CrossRefPubMedPubMedCentral
21.
go back to reference Pharris A, Np H, Tishelman C, Marrone G, Kim Chuc NT, Brugha R, Thorson A. Community patterns of stigma towards persons living with HIV: a population-based latent class analysis from rural Vietnam. BMC Public Health. 2011;11(1471–2458 (Electronic)):705.CrossRefPubMedPubMedCentral Pharris A, Np H, Tishelman C, Marrone G, Kim Chuc NT, Brugha R, Thorson A. Community patterns of stigma towards persons living with HIV: a population-based latent class analysis from rural Vietnam. BMC Public Health. 2011;11(1471–2458 (Electronic)):705.CrossRefPubMedPubMedCentral
22.
go back to reference Nyblade LC. Measuring HIV stigma: existing knowledge and gaps. Psychol Health Med. 2006;11(3):335–45.CrossRefPubMed Nyblade LC. Measuring HIV stigma: existing knowledge and gaps. Psychol Health Med. 2006;11(3):335–45.CrossRefPubMed
23.
go back to reference Hannes K, Lockwood C, Pearson A. A comparative analysis of three online appraisal instruments' ability to assess validity in qualitative research. Qual Health Res. 2010;20(1049–7323 (Print)):1736–43.CrossRefPubMed Hannes K, Lockwood C, Pearson A. A comparative analysis of three online appraisal instruments' ability to assess validity in qualitative research. Qual Health Res. 2010;20(1049–7323 (Print)):1736–43.CrossRefPubMed
24.
go back to reference Brown SC, Stevens RA, Troiano PF, Schneider MK. Exploring complex phenomena: Grounded theory in student affairs research. Journal of College Student Development. 2002;43(2):1–11. Brown SC, Stevens RA, Troiano PF, Schneider MK. Exploring complex phenomena: Grounded theory in student affairs research. Journal of College Student Development. 2002;43(2):1–11.
25.
go back to reference Greeff M. Stigma, discrimination and living with HIV/AIDS: a cross-cultural perspective. School of Public Health, la Trobe University, Australia. Netherlands: Springer; 2013. Greeff M. Stigma, discrimination and living with HIV/AIDS: a cross-cultural perspective. School of Public Health, la Trobe University, Australia. Netherlands: Springer; 2013.
26.
go back to reference Moshabela M, Pronyk P, Williams N, Schneider H, Lurie M. Patterns and implications of medical pluralism among HIV/AIDS patients in rural South Africa. AIDS Behav. 2011;15(4):842–52.CrossRefPubMedPubMedCentral Moshabela M, Pronyk P, Williams N, Schneider H, Lurie M. Patterns and implications of medical pluralism among HIV/AIDS patients in rural South Africa. AIDS Behav. 2011;15(4):842–52.CrossRefPubMedPubMedCentral
27.
go back to reference Unge C, Ragnarsson A, Ekstrom AM, Indalo D, Belita A, Carter J, Ilako F, Sodergard B. The influence of traditional medicine and religion on discontinuation of ART in an urban informal settlement in Nairobi, Kenya. AIDS Care. 2011;23(7):851–8.CrossRefPubMed Unge C, Ragnarsson A, Ekstrom AM, Indalo D, Belita A, Carter J, Ilako F, Sodergard B. The influence of traditional medicine and religion on discontinuation of ART in an urban informal settlement in Nairobi, Kenya. AIDS Care. 2011;23(7):851–8.CrossRefPubMed
28.
go back to reference WHO. WHO Traditional Medicine Strategy: 2014–2013. In. Geneva, Switzerland; 2013. WHO. WHO Traditional Medicine Strategy: 2014–2013. In. Geneva, Switzerland; 2013.
29.
go back to reference Pantelic M, Cluver L, Boyes M, Toska E, Kuo C, Moshabela M. Medical pluralism predicts non-ART use among parents in need of ART: a community survey in KwaZulu-Natal, South Africa. AIDS Behav. 2015;19(1):137–44.CrossRefPubMedPubMedCentral Pantelic M, Cluver L, Boyes M, Toska E, Kuo C, Moshabela M. Medical pluralism predicts non-ART use among parents in need of ART: a community survey in KwaZulu-Natal, South Africa. AIDS Behav. 2015;19(1):137–44.CrossRefPubMedPubMedCentral
30.
go back to reference Flint A. Traditional healing, biomedicine and the treatment of HIV/AIDS: contrasting south african and native American experiences. Int J Environ Res Public Health. 2015;12(4):4321–39.CrossRefPubMedPubMedCentral Flint A. Traditional healing, biomedicine and the treatment of HIV/AIDS: contrasting south african and native American experiences. Int J Environ Res Public Health. 2015;12(4):4321–39.CrossRefPubMedPubMedCentral
31.
go back to reference Poudel KC, Jimba M, Joshi AB, Poudel-Tandukar K, Sharma M, Wakai S. Retention and effectiveness of HIV/AIDS training of traditional healers in far western Nepal. Tropical Med Int Health. 2005;10(7):640–6.CrossRef Poudel KC, Jimba M, Joshi AB, Poudel-Tandukar K, Sharma M, Wakai S. Retention and effectiveness of HIV/AIDS training of traditional healers in far western Nepal. Tropical Med Int Health. 2005;10(7):640–6.CrossRef
32.
go back to reference Kaboru BB, Falkenberg T, Ndubani P, Hojer B, Vongo R, Brugha R, Faxelid E. Can biomedical and traditional health care providers work together? Zambian practitioners' experiences and attitudes towards collaboration in relation to STIs and HIV/AIDS care: a cross-sectional study. Hum Resour Health. 2006;4:16.CrossRefPubMedPubMedCentral Kaboru BB, Falkenberg T, Ndubani P, Hojer B, Vongo R, Brugha R, Faxelid E. Can biomedical and traditional health care providers work together? Zambian practitioners' experiences and attitudes towards collaboration in relation to STIs and HIV/AIDS care: a cross-sectional study. Hum Resour Health. 2006;4:16.CrossRefPubMedPubMedCentral
33.
go back to reference Gqaleni N, Hlongwane T, Khondo C, Mbatha M, Mhlongo S, Ngcobo N, Mkhize VT, Mtshali N, Pakade R, Street RA. Biomedical and traditional healing collaboration on HIV and AIDS in KwaZulu-Natal, South Africa. Univ Forum. 2011;2(2 (2011)). Gqaleni N, Hlongwane T, Khondo C, Mbatha M, Mhlongo S, Ngcobo N, Mkhize VT, Mtshali N, Pakade R, Street RA. Biomedical and traditional healing collaboration on HIV and AIDS in KwaZulu-Natal, South Africa. Univ Forum. 2011;2(2 (2011)).
34.
go back to reference Moshabela M, Zuma T, Orne-Gliemann J, Iwuji C, Larmarange J, McGrath N. "It is better to die": experiences of traditional health practitioners within the HIV treatment as prevention trial communities in rural South Africa (ANRS 12249 TasP trial). Aids Care-Psychol Socio-Med Aspects Aids/Hiv. 2016;28(1360–0451 (Electronic)):24–32.CrossRef Moshabela M, Zuma T, Orne-Gliemann J, Iwuji C, Larmarange J, McGrath N. "It is better to die": experiences of traditional health practitioners within the HIV treatment as prevention trial communities in rural South Africa (ANRS 12249 TasP trial). Aids Care-Psychol Socio-Med Aspects Aids/Hiv. 2016;28(1360–0451 (Electronic)):24–32.CrossRef
35.
go back to reference UNAIDS, Foundation THJKF: Financing the response to HIV in low- and middle-income countries: international assistance from donor governments in 2015. ; 2016. UNAIDS, Foundation THJKF: Financing the response to HIV in low- and middle-income countries: international assistance from donor governments in 2015. ; 2016.
36.
37.
go back to reference Bassett IV, Wilson D, Taaffe J, Freedberg KA. Financial incentives to improve progression through the HIV treatment cascade. Curr Opin HIV AIDS. 2015;10(6):451–63.CrossRefPubMedPubMedCentral Bassett IV, Wilson D, Taaffe J, Freedberg KA. Financial incentives to improve progression through the HIV treatment cascade. Curr Opin HIV AIDS. 2015;10(6):451–63.CrossRefPubMedPubMedCentral
38.
go back to reference Thapa S, Hannes K, Cargo M, Buve A, Mathei C. Effect of stigma reduction intervention strategies on HIV test uptake in low- and middle-income countries: a realist review protocol. Syst Rev. 2015;4(2046–4053 (Electronic)):142.CrossRefPubMedPubMedCentral Thapa S, Hannes K, Cargo M, Buve A, Mathei C. Effect of stigma reduction intervention strategies on HIV test uptake in low- and middle-income countries: a realist review protocol. Syst Rev. 2015;4(2046–4053 (Electronic)):142.CrossRefPubMedPubMedCentral
Metadata
Title
Theorizing the complexity of HIV disclosure in vulnerable populations: a grounded theory study
Authors
Subash Thapa
Karin Hannes
Anne Buve
Shivani Bhattarai
Catharina Mathei
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Public Health / Issue 1/2018
Electronic ISSN: 1471-2458
DOI
https://doi.org/10.1186/s12889-018-5073-x

Other articles of this Issue 1/2018

BMC Public Health 1/2018 Go to the issue