thesis on hiv

• Bibliography
• More Referencing guides Blog Automated transliteration Relevant bibliographies by topics
• Automated transliteration
• Relevant bibliographies by topics
• Referencing guides

Dissertations / Theses on the topic 'Prevention of HIV and AIDS'

Create a spot-on reference in apa, mla, chicago, harvard, and other styles.

Consult the top 50 dissertations / theses for your research on the topic 'Prevention of HIV and AIDS.'

Next to every source in the list of references, there is an 'Add to bibliography' button. Press on it, and we will generate automatically the bibliographic reference to the chosen work in the citation style you need: APA, MLA, Harvard, Chicago, Vancouver, etc.

You can also download the full text of the academic publication as pdf and read online its abstract whenever available in the metadata.

Browse dissertations / theses on a wide variety of disciplines and organise your bibliography correctly.

Acheampong, Hattie. "Church-Based HIV/AIDS Prevention for Adults." ScholarWorks, 2014. https://scholarworks.waldenu.edu/dissertations/84.

Higgins, Donna L. "Social capital and HIV prevention." Thesis, University of Nottingham, 1997. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.360543.

Du, Plooy Frederik Simon. "Perceptions of HIV/AIDS prevention workers in Soshanguve of the role of traditional African beliefs in HIV/AIDS prevention." Diss., Pretoria : [s.n.], 2004. http://upetd.up.ac.za/thesis/available/etd-02172005-103325.

Hallin, Emma, Johanna Olsson, and Sofia Lundemo. "HIV/AIDS Prevention in Uganda : a Success Story." Thesis, University of Kalmar, Baltic Business School, 2008. http://urn.kb.se/resolve?urn=urn:nbn:se:hik:diva-723.

The purpose of this essay was to examine which marketing tools have contributed to Uganda’s accomplishments in the prevention of HIV and AIDS. We wanted to investigate whether or not marketing as a phenomenon actually can contribute to a better good, and how it is possible with non-profit marketing, where there are no goals of making financial profits, to reach out with proper knowledge to an entire population.

We chose to work within qualitative methods, and we have carried out our research by performing several open interviews with people who work with the difficulties of HIV/AIDS in Uganda. We also conducted a number of interviews with the citizens of Kampala, capital of Uganda, to get a different perspective of the marketing of HIV/AIDS.

Our theoretical framework consists of two main headlines, which are Marketing to Change Behaviours and Communication Tools. Under the first heading we discuss how it is possible to make people change certain behaviours, and what ways in carrying out the information will make people take action. Under the second headline, we explore the different tools that can be used to market a non-profit message for implementing behavioural change.

In the empirical data, we are presenting the voices of our interviewees, using the same two main headlines as in the theoretical framework. The discussion question if there has been any change in the behaviour regarding HIV and AIDS amongst the Ugandan population, and how to proceed to encourage behavioural change. The other central discussion concerns the tools used in the prevention of HIV/AIDS in Uganda, to be able to decrease the number of new infections.

In our analysis, we are discussing around the different marketing tools that have been used in the successful prevention against HIV and AIDS in Uganda and which have been more or less efficient. This discussion is completed in a conclusion, where we confine the main marketing tools that have been the key factors in the prevention information of HIV/AIDS. We are finally giving our recommendations about what tools we consider Uganda can implement to perform better in order for the disease to decrease even more.

Shelver, Amy. "The AIDS of aid?: long-term organisation challenges of a CBO dealing with HIV/AIDS, poverty and donor aid." Thesis, Nelson Mandela Metropolitan University, 2012. http://hdl.handle.net/10948/d1012321.

Proude, Elizabeth Marjorie. "HIV/STD Prevention in General Practice." University of Sydney. Public Health, 2002. http://hdl.handle.net/2123/838.

Sjögren, Anders. "Governmentality and the Swedish Approach on HIV/AIDS-prevention." Thesis, Umeå universitet, Juridiska institutionen, 2018. http://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-153906.

Persson, Stina, and Olof Lundqvist. "HIV/AIDS in northern Tanzania : An investigation of activity participant’s opinions on Kilimanjaro Aids Control Association (KACA) and their work on combating HIV/AIDS." Thesis, Uppsala University, Department of Public Health and Caring Sciences, 2010. http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-112866.

Aim The aim of this study is to investigate the activity participants’ opinions on Kilimanjaro Aids Control Associations’ (KACA) work in combating HIV/AIDS in Moshi, Tanzania, and to examine what they have learnt from participating KACA’s activities. The authors also examined whether the participants thought the activity has influenced on their behaviour.

Method The study is an explorative qualitative study with semi-structured interviews. The respondents (20) were purposively selected in order to get balanced representation.

Results The majority of respondents were very grateful after being in contact with KACA. According to some of the respondents, KACA supplies needy people with financial as well as mental support. Many of the respondents have been passing on their new knowledge about HIV/AIDS to others, and claimed that they have changed their behaviour.

Conclusion Our findings were that the majority of our respondents had positive experiences about KACA’s role in combating HIV/AIDS in the Kilimanjaro area. Almost every respondent claimed they had got new knowledge about HIV/AIDS. The new knowledge led to reduced risk taking behaviour, which we believe can reduce the spread of HIV. Since this study contains 20 respondents, the results can not be generalized.

Lufuluabo, Ngeleka Albert. "Role of contraception in HIV prevention." Thesis, Stellenbosch : Stellenbosch University, 2013. http://hdl.handle.net/10019.1/79936.

Keen, Barbara. "The role of parents in HIV/AIDS primary prevention education /." Title page, contents and abstract only, 1992. http://web4.library.adelaide.edu.au/theses/09PM/09pmk26.pdf.

Ahmed, Naheed. "Contextualizing HIV/AIDS Prevention and Treatment Programs in Zanzibar, Tanzania." Scholar Commons, 2011. http://scholarcommons.usf.edu/etd/2978.

Haochu, Li Pimpawun Boonmongkon. "Homosexuality in contemporary chinese society : implications for HIV/AIDS prevention /." Abstract, 2006. http://mulinet3.li.mahidol.ac.th/thesis/2549/cd388/4737913.pdf.

Reed, Jenny. "The utility of process evaluation : understanding HIV/AIDS prevention programmes." Master's thesis, University of Cape Town, 2009. http://hdl.handle.net/11427/8990.

Sangaramoorthy, Thurka. "We all have AIDS: Circulations of risk, race, and statistics in HIV/AIDS prevention." Diss., Search in ProQuest Dissertations & Theses. UC Only, 2008. http://gateway.proquest.com/openurl?url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:dissertation&res_dat=xri:pqdiss&rft_dat=xri:pqdiss:3311350.

Parkhurst, Justin Oliver. "HIV prevention policy in sub-Saharan Africa : the Ugandan experience." Thesis, University of Oxford, 2002. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.270134.

Wang, Ya-Chien. "A systematic evaluation of culturally sensitive HIV/AIDS prevention interventions in the US, 1996--2007." Diss., Connect to online resource - MSU authorized users, 2008.

Strebel, Ann-Marie. "Women and Aids : a study of issues in the prevention of HIV infection." Doctoral thesis, University of Cape Town, 1994. http://hdl.handle.net/11427/13857.

Mays, Chelsea G. "African American family communication and its effects on HIV/AIDS prevention." Thesis, Bowie State University, 2015. http://pqdtopen.proquest.com/#viewpdf?dispub=1585660.

Open and sincere communication produces an atmosphere that allows family members to articulate love and respect for one another. Results make it obvious that family communication is an important untapped resource when discussing increasing rates of HIV/AIDS infections. This study examines family communication, African Americans and HIV/AIDS prevention.

With 32% of the reported cases of AIDS are African Americans and only 12 % of American population is African American. It is essential to find new preventative measure to suppress HIV rates in African American communities. By assessing the communication orientation(s) that work best when providing sex education to teenagers it can establish a foundation for further research on communication about sex education, HIV and STD prevention. With the findings of what communication style(s) work best it can alter the stigmas of homosexuality tied to HIV in the African American community, delineating the discouragement of homosexual sex education lowering the rate of HIV and STD transmission.

Using semi-structured interviewing with open-ended questions made interviews more informal and easy for participants to divulge specific information. Participants were African American men and women, between the age of 18-25, residing in Southern Maryland and had a younger sibling. With the use of spiral of silence theory the study found that mass opinion given by the black church of abstinence and the lack of education on HIV/AIDS prevention due to biblical text has created a moral divide for those within the congregation that would like to speak out for preventative provisions.

Uzukwu, Elochukwu Eugene. "Review: James F. Keenan (Editor), "Catholic Ethicists on HIV/AIDS Prevention"." Bulletin of Ecumenical Theology, 2001. http://digital.library.duq.edu/u?/bet,2217.

Freudenthal, Solveig. "Visualising the invisible : exploring interactive video in HIV prevention in rural Zambia /." Stockholm, 2000. http://diss.kib.ki.se/2000/91-628-4183-1/.

Mphana, Mateboho Patricia. "HIV/AIDS prevention and care for learners in a higher education institution in Lesotho." Thesis, Stellenbosch : University of Stellenbosch, 2010. http://hdl.handle.net/10019.1/5307.

O'Neal, Johnnie. "Older MSM and HIV/AIDS: A Grounded Theory Study to Inform Prevention." VCU Scholars Compass, 2013. http://scholarscompass.vcu.edu/etd/3262.

Decoste, Anthony. "HIV/AIDS beliefs among MSM in the Philippines." Thesis, Stellenbosch : Stellenbosch University, 2015. http://hdl.handle.net/10019.1/97043.

Lourens, Guinevere Margaretha Attilla. "TB and HIV community-outreach training project in a higher education institution." Thesis, [S.l. : s.n.], 2009. http://dk.cput.ac.za/cgi/viewcontent.cgi?article=1021&context=td_cput.

Bok, Sarah H. "A multimodal analysis of selected National Lovelife HIV/AIDS prevention campaign texts." Thesis, University of the Western Cape, 2008. http://etd.uwc.ac.za/index.php?module=etd&action=viewtitle&id=gen8Srv25Nme4_4155_1259739735.

" This study investigates the ever-changing trends in visual texts and images used during HIV-prevention campaigns in South Africa. The aim is to evaluate and analyse the effect of multimodal texts used in HIV/AIDS campaigns on the understanding and interpretation by the target group, and thus gauge their effectiveness. Using a text-based multimodal approach (Kress and van Leeuwen, 1996/2006 Martin and Rose, 2004), the study takes into account variables such as socio-economic status, literacy levels, language and cultural differences of readers to evaluate the efficacy of loveLife campaigns to disseminate the HIV/AIDS prevention message. This study focuses on the choice of images and words, and whether they cohere to make a meaningful message. The study analyses how the design features, including images, colour and words, impact on the interpretation of the message and also how the design acts as an aid or barrier to the process of decoding the message. The choice of a two-pronged approach combining multimodality and a text-based (discourse) analyses often favoured by those working in systemic functional linguistics is that it enables the researcher to account for social context, economic, linguistic, cultural and behavioural factors that play a role during the decoding phase..."

Iyiani, Christian, and n/a. "A case study of HIV/AIDS prevention in Nigeria : assessment and recommendations." University of Otago. Department of Social Work and Community Development, 2008. http://adt.otago.ac.nz./public/adt-NZDU20080213.112805.

Johnson, Sharon Mary. "Transpersonal practices as prevention intervention for burnout amongst HIV/AIDS coordinator teachers." Thesis, Stellenbosch : University of Stellenbosch, 2010. http://hdl.handle.net/10019.1/2632.

Bosch, Steven. "The communication approach of the loveLife HIV/AIDS prevention programme / S. Bosch." Thesis, North-West University, 2009. http://hdl.handle.net/10394/4150.

Zolaiha, Jumroon Mikhanorn. "HIV/AIDS prevention behavior among adolescents in high school of Jakarta, Indonesia /." Abstract, 2005. http://mulinet3.li.mahidol.ac.th/thesis/2548/cd375/4737943.pdf.

Rosana, Masese Eric. "The social construction of HIV/AIDS prevention strategies among Abagusii youth-Kenya." Thesis, Pau, 2011. http://www.theses.fr/2011PAUU1020/document.

Paulo, Margarida do Rosario Domingos. "Fertility, sexuality and HIV/Aids prevention campaigns in Mafalala barrio, Maputo, Mozambique." Master's thesis, University of Cape Town, 2004. http://hdl.handle.net/11427/6060.

Carm, Ellen. "Caught in Culture? : Cultural Transformation through HIV/AIDS Prevention Education in Zambia." Doctoral thesis, Stockholms universitet, Institutionen för pedagogik och didaktik, 2017. http://urn.kb.se/resolve?urn=urn:nbn:se:su:diva-138117.

Bakhoum, Atef. "HIV/AIDS, hepatitis and sexually-transmitted infection prevention among Egyptian substance users." Thesis, University of East Anglia, 2015. https://ueaeprints.uea.ac.uk/59677/.

Madubuike, Chinweokwu Uzoamaka. "Politics of women's empowerment in Nigerian HIV/AIDS prevention programmes, 2003-2007." Thesis, London School of Economics and Political Science (University of London), 2008. http://etheses.lse.ac.uk/2164/.

Ngo, Thi Thanh Huong Yothin Sawangdee. "Effects of HIV/aids prevention outreach activities on HIV/AIDS knowledge and risk behaviors of young male IDUs in Kyson, Nghean, Vietnam /." Abstract, 2008. http://mulinet3.li.mahidol.ac.th/thesis/2551/cd419/5038605.pdf.

Kesamang, Lefhoko. "Social workers' experiences of HIV and AIDS intervention in Botswana." Thesis, Nelson Mandela Metropolitan University, 2007. http://hdl.handle.net/10948/532.

Moore, DaKysha. "HIV/AIDS Knowledge, Attitudes, Involvement, and Predictors of Condom Use Among African American College Students: Implications for Communication Strategies for HIV/AIDS Prevention." Bowling Green, Ohio : Bowling Green State University, 2008. http://rave.ohiolink.edu/etdc/view?acc%5Fnum=bgsu1206305876.

Carson, Evelyn D. "The Importance of Relational Communication for Effecting Social Change in HIV/AIDS Prevention Messages: A Content Analysis of HIV/AIDS Public Service Announcements." Ohio University / OhioLINK, 2010. http://rave.ohiolink.edu/etdc/view?acc_num=ohiou1269290096.

Mitchell, Gillian Valerie. "An evaluation of the impact of a ten hour HIV/AIDS prevention programme on male adolescents' HIV/AIDS-related knowledge, attitudes and beliefs." Thesis, University of Cape Town, 1994. http://hdl.handle.net/11427/23667.

Nightingale, Sarah. "Culturally sensitive and community-based HIV/AIDS prevention messages for African American women." Thesis, Manhattan, Kan. : Kansas State University, 2008. http://hdl.handle.net/2097/813.

Wilder, Sarah Marie. "Assessing Cultural Boundaries and Barriers to HIV/AIDS Prevention in Sub-Saharan Africa." Thesis, The University of Arizona, 2013. http://hdl.handle.net/10150/297804.

Wallace, Charles Edward. "AIDS/HIV infection prevention interventions : the experiences and perceptions of gay Black men /." Digital version accessible at:, 1998. http://wwwlib.umi.com/cr/utexas/main.

Morgan, Rosemary. "HIV/AIDS prevention policy processes in faith-based non-governmental organizations in Tanzania." Thesis, University of Leeds, 2011. http://etheses.whiterose.ac.uk/2608/.

Dalton, Michael. "Challenges, risks, and benefits of doing HIV/AIDS prevention/support work in rural communities." Thesis, McGill University, 2008. http://digitool.Library.McGill.CA:80/R/?func=dbin-jump-full&object_id=107569.

Fourie, Stephanus. "KAPB surveys for HIV/AIDS : a critical review." Thesis, Stellenbosch : Stellenbosch University, 2006. http://hdl.handle.net/10019.1/50617.

Henriksson, Benny. "Risk factor love : homosexuality, sexual interaction and HIV-prevention /." Göteborg : Göteborgs universitet, Institutionen för socialt arbete, 1995. http://bvbr.bib-bvb.de:8991/F?func=service&doc_library=BVB01&doc_number=006833499&line_number=0001&func_code=DB_RECORDS&service_type=MEDIA.

Makhubele, Jabulani Calvin. "The impact of culture on the prevention and treatment of HIV/AIDS amongst people in low-resourced areas :a social work perspective." Thesis, University of Limpopo, 2004. http://hdl.handle.net/10386/2027.

Mabeqa, Thokozile Valencia. "The reader-centredness of translated HIV/AIDS texts into isiXhosa." Thesis, Stellenbosch : Stellenbosch University, 2005. http://hdl.handle.net/10019.1/50514.

Maureau, Eva Anne. "The negotiation of HIV prevention among community HIV educators in KwaZulu-Natal, South Africa." Thesis, University of Canterbury. School of Language, Social and Political Sciences, 2014. http://hdl.handle.net/10092/10039.

Poehlman, Jon Aaron. "Community Participation and Consensus in HIV/AIDS Prevention: An Exploration of the Suzgo, the Issues of AIDS in Malawi." [Tampa, Fla.] : University of South Florida, 2004. http://purl.fcla.edu/fcla/etd/SFE0000477.

• Case Report
• Open access
• Published: 05 April 2024

Missed opportunities for HIV testing and sexual health-related challenges in an individual with intellectual disability: a case report

• Lina Martina Würfel 1 , 2 ,
• Anja Potthoff 1 , 2 ,
• Sandeep Nambiar 1 &
• Adriane Skaletz-Rorowski 1 , 2  

AIDS Research and Therapy volume  21 , Article number:  20 ( 2024 ) Cite this article

174 Accesses

1 Altmetric

Metrics details

HIV testing remains an important tool in identifying people living with HIV/AIDS (PLWHA). An early diagnosis of HIV can lead to a prolonged life expectancy if treatment is initiated promptly. Indicator conditions can be the first sign of an HIV infection and should therefore be recognised and consequently a HIV test should be carried out. Testing should occur in all individuals as sexuality can be experienced by everyone, and stigma can lead to the exclusion of vulnerable groups, leading to a gap in diagnosis and treatment [ 1 , 2 ].

Case presentation

A 63-year-old man, who identifies as bisexual and has had an intellectual disability since birth, presented at our health care centre for HIV testing. A decade ago, the patient was diagnosed with Stage III Diffuse Large B-cell Non-Hodgkin Lymphoma, an AIDS defining cancer. The patient presented at a Haematology and Oncology department 3 months prior, due to a weight loss of 10 kg over the past 5 months. Oral thrush, an HIV-indicator condition, had been diagnosed by the otolaryngologists shortly before. During this medical evaluation, pancytopenia was identified. Despite the presence of indicator conditions, the patient was never tested for HIV in the past. Staff members from the care facility for intellectually disabled suggested conducting a HIV test in our clinic through the public health department, where HIV positivity was revealed. The AIDS-defining diagnosis, along with a CD4 + cell count of 41/µl, suggests a prolonged period of HIV positivity.

Due to the presence of existing indicator conditions, an earlier HIV diagnosis was possible. We contend that most of the recent illnesses could have been prevented if earlier testing had been carried out. Therefore, patients presenting with AIDS indicator conditions, including those with mental disabilities, should be given the opportunity to be tested for HIV. HIV/AIDS trainings should be made available to health care professionals as well as to personnel interacting with vulnerable groups.

HIV testing continues to be a crucial method for identifying people living with HIV/AIDS (PLWHA) [ 3 ]. An early detection of HIV, followed by prompt initiation of treatment, can contribute to an extended life expectancy. Recognizing indicator conditions as potential early signs of HIV infection is essential, underscoring the importance of promptly conducting an HIV test. HIV-indicator conditions are those associated with or as a result of immunodeficiency and include AIDS-defining conditions [ 2 , 4 ]. Testing should be inclusive, as everyone, regardless of their sexual orientation and their mental capacity, can be vulnerable to HIV.

A 63-year-old bisexual man, with an intellectual disability since birth, presented at our center for HIV testing. Ten years prior, he had been diagnosed with Diffuse Large B-cell Non-Hodgkin Lymphoma in Stage III, an AIDS-defining cancer that requires an HIV Test [ 5 ]. Subsequently, he underwent therapy with Rituximab (8x) and CHOP (cyclophosphamide, doxorubicin hydrochloride (hydroxydaunomycin), vincristine sulfate (Oncovin) and prednisone) (6x). Three months before attending our center, he presented at a department of Hematology, Oncology, and Palliative Medicine for further investigation due to pancytopenia and a weight loss of 10 kg over the last 5 months (BMI: 17.6 kg/m2). At that time, the patient also reported experiencing heartburn. The patient denied having fever, chills, and night sweats. Additionally, there were recurrent middle ear infections, with the most recent one resulting in a perforated eardrum. Furthermore, there was an increase in episodes of panic attacks and the possibility of epilepsy was evaluated. The otolaryngologists had diagnosed oral thrush, a HIV-indicator condition, and the patient had already been receiving treatment with Amphotericin B suspension.

Amongst the diagnostics that were carried out to further investigate the symptoms the patient was presenting were, a CT scan, an esophagogastroduodenoscopy, and a bone marrow biopsy. The CT scan of the neck and thorax revealed a persistently stable lymphadenopathy, with some additional regression; a recurrence of Diffuse Large B-cell Non-Hodgkin Lymphoma could therefore be excluded. The CT scan showed an incidental finding of a hepatosplenomegaly and 4 small nodules up to 8 mm in the right lung. The esophagogastroduodenoscopy only revealed scars and transverse furrows of unclear etiology, with no evidence of a sustained fungal infection. Amphotericin B suspension was subsequently discontinued. A bone marrow biopsy was also performed but yielded no significant findings. The patient was subsequently released from the hospital. An HIV test was not carried out.

Following a training session on HIV, employees from the care facility for disabled individuals suggested carrying out an HIV test in our patient. Testing was carried out in our clinic in collaboration with the public health department, which led to the identification of HIV positivity.

The highest viral load was 73,763 copies/ml with a CD4 + helper cell count of 41/µl. The reduced CD4 + helper cell count, and the history of AIDS-defining and HIV-associated diseases imply that the diagnosis of HIV had been delayed for an extended period.

At the time of presentation at our medical center, there were no indications for other sexually transmitted infections.

Upon conversation with the patient, it emerged that he has resided in a residential facility for individuals with intellectual disabilities since 1996, with his legal caregiver being his brother. In terms of his sexual history, he was in a heterosexual relationship for eight years in the past. In 2011, the patient established a stable relationship with a homosexual man. Following this, he engaged in regular sexual encounters with different partners both inside and outside the facility. There is no record of drug use, and condom usage was infrequent.

Given the patient’s HIV-indicator conditions among the medical history such as oral thrush, pancytopenia, and wasting syndrome, as well as Diffuse Large B-cell Non-Hodgkin Lymphoma, an AIDS-defining cancer diagnosed in 2013, the question now arises as to when the HIV infection may have occurred and whether an earlier diagnosis would have been possible if HIV testing had been carried out, since indicator conditions were present.

Possible barriers hindering a timely diagnosis may have been: Stigma among physicians, which could entail erroneous assumptions regarding the sexuality of individuals with mental disabilities, failure to identify indicator conditions and test for HIV, lack of awareness among affected individuals with mental disabilities, resulting in a limited understanding of HIV and potential omission of crucial information during medical consultations, the failure to acknowledge sexuality and inadequate collection of sexual history, and insufficient inclusivity in HIV testing for all individuals.

The estimated median time for seroconversion to a CD4 + cell count below 200 cells/mm3 lies at 7,93 years [ 6 ], although not definitive, there is a strong likelihood that HIV would have been detected if HIV testing had been conducted at the onset of an indicator condition, a decade earlier. Furthermore, early HIV treatment initiation would likely have mitigated a significant part, if not all, of the more recent illness and probable HIV-related complications. This highlights the significance of HIV testing.

Assumptions and stereotyping may lead a physician to wrongly believe that a mentally disabled person is incapable of engaging in sexual relations [ 7 ].

Consequently, this stereotyping could undermine the patient’s diagnosis, impede treatment, and hinder the attainment of positive health outcomes [ 8 ]. It is crucial to diagnose HIV early in order to initiate treatment promptly, as PLWHA who start highly active antiretroviral therapy (HAART) at a later stage, with a lower CD4 + cell count, seem to exhibit a higher propensity for AIDS-related complications at advanced ages, in contrast to those who initiated treatment earlier [ 9 ].

Provider-initiated testing for indicator conditions may hold particular significance for individuals with intellectual disabilities, as it could hinder their comprehension of HIV, their ability to disclose risky behavior, and/or their capacity to seek testing independently.

On the other hand, individuals at risk of acquiring HIV and PLWHA frequently experience elevated rates of mental health issues in comparison to the general population. Therefore, it is of great importance to integrate diagnostic methods such as HIV tests among the routine checkups to reduce the impact of stigma. HIV Testing should be inclusive for everyone, regardless of the social status, disabilities, and living conditions, sexuality should be addressed openly and assumptions should be avoided [ 10 , 11 ].

Providing HIV/AIDS training through workshops and trainings for healthcare workers and related personnel who interact with vulnerable groups has proven to be highly significant, as demonstrated in this instance. If the center for disabled individuals had not proposed an HIV test for our patient, the diagnosis might not have been uncovered [ 12 ].

Additionally, sexuality needs to be acknowledged and addressed in individuals with disabilities, including those with learning disabilities, to provide education on safer sex practices and to facilitate HIV testing.

Overall, medical teams failed to recommend HIV testing in this patient multiple times, initially during the 2013 lymphoma diagnosis and at subsequent presentations with symptoms suggestive of AIDS. However, care facility staff deserve credit for recognizing the necessity of HIV testing after training and ensuring its arrangement.

Conclusions

Patients presenting with indicator conditions, including those with mental disabilities, should be tested for HIV to ensure an early diagnosis, and all patients should be asked about their sexuality as everyone can be vulnerable to HIV. Furthermore, more trainings should be made available to health care professionals and related personnel regarding sexual health.

Data availability

No datasets were generated or analysed during the current study.

Jordans CCE, Vasylyev M, Rae C, Jakobsen ML, Vassilenko A, Dauby N et al. National medical specialty guidelines of HIV indicator conditions in Europe lack adequate HIV testing recommendations: a systematic guideline review. Euro Surveill. 2022;27(48).

UN Targets [Available from. https://www.unaids.org/en/topics/2025_target_setting .

Vaz-Pinto I, Gorgulho A, Esteves C, Guimarães M, Castro V, Carrodeguas A, Medina D. Increasing HIV early diagnosis by implementing an automated screening strategy in emergency departments. HIV Med. 2022;23(11):1153–62.

Article   PubMed   PubMed Central   Google Scholar  

Bull L, Rayment M. HIV-indicator-condition-driven HIV testing: clinically effective but still rarely implemented. Clin Med (Lond). 2016;16(2):175–9.

Article   PubMed   Google Scholar  

Lodi S, Phillips A, Touloumi G, Geskus R, Meyer L, Thiébaut R, et al. Time from human immunodeficiency virus seroconversion to reaching CD4 + cell count thresholds < 200, <350, and < 500 Cells/mm³: assessment of need following changes in treatment guidelines. Clin Infect Dis. 2011;53(8):817–25.

Article   CAS   PubMed   Google Scholar  

Deffew A, Coughlan B, Burke T, Rogers E. Staff member’s views and attitudes to supporting people with an intellectual disability: a multi-method investigation of intimate relationships and sexuality. J Appl Res Intellect Disabil. 2022;35(4):1049–58.

Nyblade L, Stockton MA, Giger K, Bond V, Ekstrand ML, Lean RM, et al. Stigma in health facilities: why it matters and how we can change it. BMC Med. 2019;17(1):25.

Wada N, Jacobson LP, Cohen M, French A, Phair J, Muñoz A. Cause-specific mortality among HIV-infected individuals, by CD4(+) cell count at HAART initiation, compared with HIV-uninfected individuals. Aids. 2014;28(2):257–65.

Remien RH, Stirratt MJ, Nguyen N, Robbins RN, Pala AN, Mellins CA. Mental health and HIV/AIDS: the need for an integrated response. Aids. 2019;33(9):1411–20.

Deblonde J, De Koker P, Hamers FF, Fontaine J, Luchters S, Temmerman M. Barriers to HIV testing in Europe: a systematic review. Eur J Public Health. 2010;20(4):422–32.

Mangurian C, Cournos F, Schillinger D, Vittinghoff E, Creasman JM, Lee B, et al. Low rates of HIV Testing among adults with severe Mental illness receiving care in Community Mental Health settings. Psychiatr Serv. 2017;68(5):443–8.

Download references

No external funding was obtained for the research and preparation of this manuscript. All aspects of this work were conducted using resources available within the authors’ affiliated institutions.

Open Access funding enabled and organized by Projekt DEAL.

Author information

Authors and affiliations.

WIR-Walk In Ruhr – Center for Sexual Health and Medicine, Große Beckstraße 12, 44787, Bochum, Germany

Lina Martina Würfel, Anja Potthoff, Sandeep Nambiar & Adriane Skaletz-Rorowski

Interdisciplinary Immunological Outpatient Clinic, Center for Sexual Health and Medicine, Department of Dermatology, Venereology and Allergology, Ruhr-Universität Bochum, Bochum, Germany

Lina Martina Würfel, Anja Potthoff & Adriane Skaletz-Rorowski

You can also search for this author in PubMed   Google Scholar

Contributions

Conceptualization, A.P. and A.S.R.; writing—original draft preparation, L.M.W.; writing—review and editing, L.M.W., A.P., A.S.R., S.N.; supervision, A.P.; project administration, A.P.; All authors have read and agreed to the published version of the manuscript.

Corresponding author

Correspondence to Adriane Skaletz-Rorowski .

Ethics declarations

Competing interests.

The authors declare no competing interests.

Informed consent Statement

Written informed consent has been obtained from the legal caregiver of the patient.

Conflict of interest

The authors declare no conflict of interest.

Additional information

Publisher’s note.

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

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Würfel, L.M., Potthoff, A., Nambiar, S. et al. Missed opportunities for HIV testing and sexual health-related challenges in an individual with intellectual disability: a case report. AIDS Res Ther 21 , 20 (2024). https://doi.org/10.1186/s12981-024-00606-7

Download citation

Received : 26 February 2024

Accepted : 19 March 2024

Published : 05 April 2024

DOI : https://doi.org/10.1186/s12981-024-00606-7

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Intellectual disability
• HIV testing
• Public health

AIDS Research and Therapy

ISSN: 1742-6405

• Submission enquiries: [email protected]

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• J Int AIDS Soc
• v.16(3Suppl 2); 2013

Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis

Ingrid t katz.

1 Connors Center for Women's Health and Gender Biology, Brigham and Women's Hospital, Boston, MA, United States

2 Center for Global Health, Massachusetts General Hospital, Boston, MA, United States

3 Harvard Medical School, Boston, MA, United States

Annemarie E Ryu

4 Harvard College, Cambridge, MA, United States

Afiachukwu G Onuegbu

5 Harvard School of Public Health, Boston, MA, United States

Christina Psaros

6 Department of Psychiatry, Massachusetts General Hospital, Boston, MA, United States

Sheri D Weiser

7 Division of HIV/AIDS, San Francisco General Hospital, University of California at San Francisco, California, United States

David R Bangsberg

8 Mbarara University of Science and Technology, Mbarara, Uganda

Alexander C Tsai

Introduction.

Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes. It is generally accepted that HIV-related stigma is correlated with factors that may undermine ART adherence, but its relationship with ART adherence itself is not well established. We therefore undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence.

We searched nine electronic databases for published and unpublished literature, with no language restrictions. First we screened the titles and abstracts for studies that potentially contained data on ART adherence. Then we reviewed the full text of these studies to identify articles that reported data on the relationship between ART adherence and either HIV-related stigma or serostatus disclosure. We used the method of meta-synthesis to summarize the findings from the qualitative studies.

Our search protocol yielded 14,854 initial records. After eliminating duplicates and screening the titles and abstracts, we retrieved the full text of 960 journal articles, dissertations and unpublished conference abstracts for review. We included 75 studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, with less representation of work from Eastern Europe and Central Asia. Among the 34 qualitative studies, our meta-synthesis identified five distinct third-order labels through an inductive process that we categorized as themes and organized in a conceptual model spanning intrapersonal, interpersonal and structural levels. HIV-related stigma undermined ART adherence by compromising general psychological processes, such as adaptive coping and social support. We also identified psychological processes specific to HIV-positive persons driven by predominant stigmatizing attitudes and which undermined adherence, such as internalized stigma and concealment. Adaptive coping and social support were critical determinants of participants’ ability to overcome the structural and economic barriers associated with poverty in order to successfully adhere to ART. Among the 41 quantitative studies, 24 of 33 cross-sectional studies (71%) reported a positive finding between HIV stigma and ART non-adherence, while 6 of 7 longitudinal studies (86%) reported a null finding (Pearson's χ 2 =7.7; p =0.005).

Conclusions

We found that HIV-related stigma compromised participants’ abilities to successfully adhere to ART. Interventions to reduce stigma should target multiple levels of influence (intrapersonal, interpersonal and structural) in order to have maximum effectiveness on improving ART adherence.

Adherence to HIV antiretroviral therapy (ART) is a critical determinant of HIV-1 RNA viral suppression and health outcomes [ 1 – 3 ]. Early studies of ART adherence focused primarily on cognitive processes that may affect adherence, such as forgetfulness and health literacy [ 4 – 6 ]. More recently, investigators have shown that ART adherence in resource-limited settings, where treatment is generally provided free of charge, may be contingent upon structural barriers, such as food insecurity [ 7 – 12 ] or geographic isolation and lack of resources to pay for transportation to clinic [ 13 – 17 ].

The stigma of HIV and AIDS is one social process that has been broadly assumed to adversely affect multiple facets of engagement in HIV-related care as well as other factors that may undermine ART adherence, including HIV serostatus disclosure [ 18 – 20 ], social support [ 18 , 21 ] and mental wellbeing [ 21 , 22 ]. Goffman [ 23 ] conceptualized stigma as an “attribute that is deeply discrediting” imposed by society that reduces someone “from a whole and usual person to a tainted, discounted one” (p. 3). When the attribute becomes linked to “discrediting dispositions” (e.g., negative evaluations or stereotypes), these may come to be widely believed in the community [ 24 ]. During the labelling process [ 25 – 27 ], persons with and without the stigmatized attribute are separated into “them” and “us” [ 28 ] and may be subjected to overt acts of hostility and discrimination (enacted stigma) [ 29 ]. To avoid the potentially unpleasant consequences of revealing their discredited status, stigmatized persons may elect to conceal their seropositivity from others [ 20 , 30 ]. Stigmatized persons may also internalize the beliefs held in the community and develop self-defacing internal representations of themselves (internalized stigma) – possibly leading to demoralization, diminished self-efficacy and emotional distress [ 31 , 32 ].

Despite substantive advances in our understanding of the stigma process, the mechanisms through which stigma compromises ART adherence are not well understood. From a public health perspective, this is an important gap in the literature because sustained adherence [ 33 ] is a critical step in the spectrum of engagement in HIV-related care [ 34 , 35 ]. Although the “test-and-treat” approach [ 36 ] has achieved a great deal of popularity in a brief amount of time, observers have expressed concerns that persisting stigma may pose a major obstacle to its success [ 37 ]. Therefore, we undertook this review to systematically assess the relationship between HIV-related stigma and ART adherence.

Search strategy and study selection

Three study authors (AER, AGO, ACT) searched nine electronic databases for published and unpublished literature: BIOSIS Previews, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, the Educational Resources Information Center (ERIC), the Medical Literature Analysis and Retrieval System Online (MEDLINE), ProQuest Dissertations & Theses, PsycINFO, Web of Science (Science Citation Index Expanded, Social Sciences Citation Index, and Arts & Humanities Citation Index) and the World Health Organization African Index Medicus. In general, each set of search terms applied to these databases was oriented towards identifying studies of ART adherence among HIV-positive adults (Box S1). We conducted all searches in May 2011, with the exception of the ProQuest search, which was performed in June 2011. In February 2013, one study author (ACT) updated the MEDLINE search to identify more recent articles published since the study was initiated. We also consulted with experts in the field to identify additional studies that our systematic evidence search may have missed.

First we imported all records into EndNote reference management software (version X4.0.2, Thomson Reuters, Philadelphia, Penn.) and used the automated “Find Duplicates” function to exclude any duplicates. Then we screened the titles and abstracts of all records to identify studies that appeared to be potentially related to ART adherence among HIV-positive persons. We then obtained the full text of these articles for review, specifically to identify articles that reported either a quantitative estimate of association between a measure of stigma or disclosure and a measure of adherence, or qualitative findings about how stigma or lack of disclosure affected adherence. Although our review was focused on the relationship between stigma and adherence, we also chose to include studies examining the impacts of serostatus non-disclosure because it is a proximate consequence of stigma [ 19 , 20 ]. Our goal in including qualitative studies as part of this systematic review was to inductively develop an in-depth understanding of persistent themes and assess the transferability of these themes across contexts [ 38 ]. Due to our interest in describing relationships between stigma and adherence across a wide range of countries, we chose not to exclude any study based on quality, country of origin or language.

Quality assessment

To assess the quality of the included qualitative studies, we adapted questions representing the three key conceptual domains described in the Critical Appraisal Skills Programme quality assessment tool [ 39 , 40 ]. These domains also mapped onto prominent criteria employed by previous researchers as identified in the review of qualitative quality assessment tools by Tong et al . [ 41 ]. The criteria we used were as follows: (1) the role of the researcher was clearly described; (2) the sampling method was clearly described; (3) the method of data collection was clearly described; and (4) the method of analysis was clearly described. We found that the included qualitative studies consistently described the role of the research and the method of data collection, but many studies reported neither the sampling method nor the method of analysis. Overall, 15 studies were assessed to be at low risk of bias (Table S1).

To assess the quality of the included quantitative studies, we developed an assessment tool based on the six major conceptual domains identified by Sanderson et al . [ 42 ]. The criteria we used were as follows: (1) the study was based on a probability sample of participants; (2) the study used a validated self-report scale to measure stigma or disclosure; (3) the study used a validated self-report scale or objective count (e.g., pill count, pharmacy refill) to measure ART adherence; (4) the statistical analysis accounts for missingness at random (MAR) or missingness not at random (MNAR) (longitudinal studies only); (5) the study design or statistical analysis controls or adjusts for potential confounding; and (6) competing interests were declared. Overall, all studies except for one were assessed to be at risk of bias (Table S2).

Data synthesis

We organized studies by year of publication, country of origin, study design and types of measures employed. For the quantitative studies, due to substantial heterogeneity in the measures of stigma, serostatus disclosure and ART adherence that were employed, we did not attempt to summarize the data using meta-analysis. However, we examined patterns across studies with respect to the estimated associations and the precision of these estimates.

For the subset of qualitative studies, our goal was to generate new theoretical insights. Therefore, we used the iterative process of meta-synthesis proposed by Noblit and Hare [ 43 ] to identify themes that recurred frequently or were prominently featured throughout the data. Meta-synthesis (also described as meta-ethnography) is an interpretive approach to summarizing qualitative research that has been employed to understand vaginal practices in sub-Saharan Africa [ 44 ], delays in presentation for cancer care [ 45 ] and adherence to tuberculosis treatment [ 46 ]. Key themes and concepts were collected and peer-reviewed for inclusiveness. First-order findings (quotations) were used to support second-order interpretations (authors’ analyses) to gain new insight into the relationships between stigma and ART adherence. A summary definition of second-order constructs was generated for further clarification and then consolidated into a line of argument that led to a third-order analysis, which we describe below. Based upon the data set, we achieved theoretical saturation within the first 10 manuscripts, although basic elements for meta-themes were evident as early as six manuscripts. Variability within the data followed similar patterns, consistent with prior qualitative meta-synthesis research [ 47 ].

Our initial search yielded 14,854 records, of which 9009 were identified as duplicates through the use of automated software ( Figure 1 ). After screening the titles and abstracts of the remaining 5845 records, we eliminated 4000 records that did not appear to contain relevant data on adherence or provided potentially relevant adherence data specific to a specialized population (e.g., children or pregnant women), eight unpublished conference abstracts or dissertations matched to subsequently published peer-reviewed journal articles in our database of records, 199 reviews that did not report original data, and 678 additional duplicates that had been misclassified as non-duplicates by the automated software. We retrieved 960 journal articles, unpublished dissertations and conference abstracts for full text review. Of these, 889 did not contain quantitative or qualitative data relating stigma or disclosure to ART adherence and were therefore excluded. Expert review suggested four additional articles for inclusion. The final sample included 75 studies: 34 qualitative studies and 41 quantitative studies.

Flow diagram. We identified 14,854 records by searching nine electronic databases, yielding 34 qualitative studies and 41 quantitative studies.

Synthesis of qualitative studies

Thirty-four qualitative studies conducted during 1999–2013 were included in the review, including one written in French. Represented in these manuscripts were views from 1328 study participants in 26 countries. Of note, only one country from the UNAIDS Eastern Europe and Central Asia region was represented: Serbia and Montenegro. The median number of participants was 38 (interquartile range (IQR), 27 to 48; range, 6 to 118). Participants included adult men and women ranging in age from 18 years to over 60 years old, HIV-positive persons as well as providers of HIV care, single persons and those in intimate partnerships, and persons with and without children. Specific high-risk groups were well represented and included men who have sex with men, injection drug users and commercial sex workers.

After reviewing each of the qualitative studies in detail, we identified 24 second-order constructs, supported by original quotes, in multiple manuscripts. Second-order constructs relevant to ART adherence were identified, and key themes were generated into a line of argument that led to 15 third-order constructs. These were grouped into five distinct third-order labels that we categorized as themes, all of which are described in detail in Table 1 .

Qualitative studies on stigma, disclosure and ART adherence ( N =34)

Theme 1: social support

The most commonly cited theme related to ART adherence was the role of social support. Specifically, participants described spousal or familial support as being critical for enabling them to overcome enactments of HIV-related stigma and other obstacles to care and successfully adhere to treatment [ 48 – 70 ]. As noted by one 45 year-old HIV-positive rice dealer in Chennai, India,

A person without a family is like a single tree struggling for life. My children and my wife are my backbone. Now I have brought changes in myself and want to achieve many things. [ 54 , p. 496]

Compromised relationships could result from either HIV illness or HIV treatment. Many participants described being socially isolated due to the physical manifestations of HIV-related illness [ 55 – 57 , 64 – 67 , 69 , 71 , 72 ] . As described by one HIV-positive mother in Kampala, Uganda,

These days when people come to know that you have AIDS they don't want to come near you, as if you are an abominable thing (‘bakwenyinyala’). You cannot feel free. Wherever you go they start talking, ‘See that one, she is sick’. [ 57 , p. S88]

On the other hand, HIV treatment could also undermine social relationships. Unintended disclosure was viewed as a consequence of being on complex regimens that often needed to be taken multiple times per day [ 12 , 52 , 53 , 55 , 59 – 61 , 63 – 65 , 69 , 72 – 74 ]. This was commonly discussed in some of the older studies, which were conducted during a time when pill burden was high and participants reported difficulty in understanding when and how to take their medications [ 12 , 50 , 52 , 58 , 60 , 61 , 64 , 67 , 68 , 70 , 74 , 75 ]. Attempts at concealment, such as by hiding medications or furtively taking medications, were described as contributing to treatment interruptions [ 12 , 48 , 49 , 54 – 56 , 64 – 72 , 76 , 77 ].

In addition, some participants felt that the medications themselves were associated with side effects that had unwelcome physical manifestations:

[ART] has given more side-effects for me such as vomiting, herpes/zoster, and skin rashes. I have lost my sight in my right eye and my left eye also has poor vision. – HIV-positive woman from far western Nepal [ 68 , p. 7]

Desire to avoid these physical stigmas, or fear of “the thing [sic] that people would say” [ 55 , p. 102], motivated some participants to avoid taking medications and evade detection.

A more circumscribed discussion in the literature related to norms about gender roles, particularly in patriarchal cultures. Byakika-Tusiime et al . [ 57 ] explained how HIV-positive women were better able to adhere to ART when others did not identify them as being infected with HIV. An HIV-positive mother could evade detection by giving birth to an uninfected child and establishing her role as a caretaker. This was discussed by an HIV-positive mother in Kampala, Uganda, who described how giving birth to a healthy baby changed her family's assumptions about the inevitability of her death:

When [my sister] saw that since giving birth, my baby was not falling sick (the other children used to be sickly), that my baby was looking nice, did not have a rash, and was growing fast she said ‘I used to think you were infected. I had taken you out of all my plans.’ I responded that ‘I am not infected, don't you see my baby?’ So that's where I ended her suspicions about my being sick. Now she knows that I am not infected, which is not true. [ 57 , p. S88]

Other authors mentioned the importance of women being able to hide their seropositivity in settings where men dominated household decision-making, so as to avoid social isolation and/or abandonment [ 49 , 52 , 54 , 64 , 68 , 72 ]. In these settings, some women reported relying on healthcare providers to inform their sexual partners of their HIV status rather than informing their partners directly themselves.

Women who gave birth to an HIV-positive child experienced feelings of shame and social rejection, both within and outside of the family. Participants in these studies discussed the difficulty associated with disclosing the status of an HIV-positive child, particularly in communities where HIV was highly stigmatized and where appearing ill often led to abandonment by one's family and community [ 48 , 53 , 55 – 57 , 64 – 67 , 69 , 71 , 72 ] .

The thing that disturbs me is that I always think what will I tell my child when he grows to a level of understanding and he asks me why he is taking drugs. Because even now he asks me, ‘Mummy, I no longer cough but why am I still taking drugs every day?’ What will I tell the child?’ – HIV-positive mother from Kampala, Uganda [ 57 , p. S88]

Theme 2: self-identity

Self-identity was another prominent theme identified in these studies. Multiple studies elaborated on how social norms intensified the stigma of HIV and undercut participants’ willingness to disclose to others [ 50 , 51 , 54 , 61 – 63 , 71 – 74 , 76 , 77 ] . In many settings, study participants described HIV-related stigma as being layered on top of pre-existing inequalities, such as those related to gender, race or sexual minority status:

I often hear my friends speak negatively about people being HIV-positive. They always have degrading or negative remarks to make. What I dislike most is when they call people names (e.g., fagot, whore, and junkie). Whenever I go out with them or they come over to visit, I don't take my medications. I could never let them know I'm positive. – HIV-positive African-American woman living in Baltimore, U.S. [ 49 , p. 684]

Konkle-Parker et al . [ 55 ] and Edwards [ 49 ] both discussed the difficulty that persons in a minority group experienced when self-identifying as HIV-positive, since it often led to further enactments of stigma, including overt discrimination and/or acts of hostility. In such a setting (and consistent with Theme 1), many participants opted not to take their medications for fear of disclosure. Ware et al . [ 51 ] and Sabin et al . [ 77 ] described the added burden and social isolation that accompanied an HIV diagnosis among participants who actively used illicit substances. In these cases, self-efficacy was often low, and the lifestyle modifications required to achieve consistent adherence proved to be challenging for participants.

Drug users, it's a group that right now everyone in society hates. Including myself, I hate myself. But the problem is [that] there is nothing I can do. – 40-year-old, injection drug using, HIV-positive married man living in Old Dali, Yunnan Province, China [ 77 , p. 1244]

The experiences of persons who had internalized the stigma of HIV was contrasted with reports of persons who had accepted their HIV status and who had successfully cultivated a self-perception of being pro-active and “choosing to live” [ 74 , p. 466]. These participants were able to successfully adhere to their ART regimens [ 52 – 56 , 58 , 59 , 61 , 66 , 72 – 74 ] . In these studies, participants described how the deaths of HIV-positive friends motivated them to take responsibility for their own treatment. Some participants also described feeling strong enough to continue to work and provide for their families.

Then I had some friends die of full-blown AIDS, and I looked around and seen what a horrible death that was … And so I know I wanted to live, and I wouldn't want to send my family through that. So I knew I had to take my medicine and … I know I wants to live – HIV-positive African-American study participant from Mississippi [ 55 , p. 4]

Theme 3: poverty

In several studies, participants also described how poverty and stigma were intertwined in a reciprocal and mutually reinforcing relationship ( Figure 2 ). Participants spoke of being viewed as weak, unproductive members of society and of being excluded from informal networks of mutual aid:

They see it as useless to assist someone who has a shorter time to live. It's like wasting money. Why assist someone who is going to die? – HIV-positive person living in Dar es Salaam, Tanzania [ 67 , p. 1311]

Thus, conditions of poverty worsened stigma by emphasizing one's economic worth (or lack thereof) to the community. In resource-limited settings where social networks serve as a form of informal risk-sharing (consistent with Theme 1), and where neighbours often live in close proximity to each other, participants reported feeling ashamed and ultimately more stigmatized by the public nature of unwanted disclosures:

I used to have a neighbour … who knew my status. At times, I used to get porridge from KENWA and bring it home. She had a child who was my kid's friend and age mate. One day, I gave the porridge to her child and [she] was furious and shouted at the little girl; ‘where did you get that porridge? Take it back! You are taking porridge from people with AIDS,’ she was shouting outside and I was in the house. – HIV-positive woman living in a slum community in Nairobi, Kenya [ 72 , p. 874]

Conversely, stigma was also found to exacerbate the economic impacts of HIV. Economic insecurity resulting from stigma and social isolation was particularly challenging for widowed women who had lost their husbands to AIDS. Tarakeshwar et al . [ 54 ] described 9 out of 10 widowed women living in Chennai, India, who were discriminated against, experienced housing insecurity and were isolated by their in-laws after their husbands’ deaths. Stigma was also cited as leading to embarrassment at work, and ultimately causing participants to stop working in order to avoid disclosure, leading to further economic insecurity:

I was on 5 days leave [when I came to test for HIV] and I stayed another week. They were looking for me at work … I was staying [away] because I was sort of embarrassed by my own things. I was embarrassed by my own fate. – 39-year-old HIV-positive unmarried man living in Gaborone, Botswana [ 56 , p. 304]

Lastly, for participants in resource-limited settings, financial burdens posed a significant barrier to adherence due to costs of the medications themselves, the costs of transportation to pick up free medications from clinic, or wages foregone when attending clinic [ 12 , 48 , 54 , 60 , 61 , 64 , 67 , 68 , 70 , 72 , 76 , 77 ]. These treatment interruptions further compromised participants’ health, reinforcing their status as unproductive members of the community.

Reciprocal relationships between poverty and stigma. HIV-associated illness reinforces the perceived economic inadequacy of HIV-positive persons, who are excluded from networks of mutual aid. Stigmatized persons are excluded from the community, undermining their social support and worsening economic insecurity.

Theme 4: coping

Coping emerged as a means by which participants attempted to manage stigma and adhere to ART. At times, these coping strategies were maladaptive and detrimental to health. Many participants reported low self-esteem, depressed mood or anger related to their diagnosis, citing their inability to cope with their HIV status as the reason they failed to take their medications [ 49 , 55 , 57 , 65 , 67 , 69 , 72 , 73 , 77 ]:

I was mad, and I was upset, and I was in denial. And it took me five years to tell anybody that was close to me. So I kept that to myself for a long time, and I was very angry. Right now, I still don't take [the medicines] like I should. – HIV-positive study participant recruited from a large public infectious disease clinic in Mississippi [ 55 , p. 4]

In addition, ART misconceptions (e.g., “Why should I die by taking these malicious pills?”[ 68 , p. 3]) and HIV conspiracy beliefs that were often fuelled by stigma led to ART non-adherence [ 12 , 68 , 71 , 72 ]. Participants who lacked the internal resources to cope adaptively described how they self-medicated with alcohol or illicit substances, but these behaviours further compromised their abilities to consistently adhere to treatment [ 52 , 53 , 73 ].

Adaptive coping strategies included those that supported adequate treatment for depression and anxiety, along with acceptance of one's diagnosis. These strategies appeared to provide a protective buffer against stigma and promote acceptance of lifelong treatment [ 12 , 54 – 56 , 58 , 61 , 67 , 69 , 72 – 74 ] , particularly for those who were able to incorporate these into their new self-identities (consistent with Theme 2). Likewise, spirituality and faith in God enabled some participants to overcome adversity associated with disclosure and HIV-related stigma and to consistently take their medications [ 12 , 52 , 54 – 56 , 61 , 67 , 69 , 72 ] :

I am a Christian and a believer, I know that God exists but those medicines also were inspired by God. God is the one who gave inspiration to doctors to make those medicines for us. – 59-year-old man on ART, from the Democratic Republic of Congo [ 12 , p. 4]

Theme 5: health systems

A theme common to several studies was that different aspects of the health system could help to moderate the impacts of HIV-related stigma on ART adherence. Specifically, compassionate human capital elements could establish a supportive clinical environment for patients, while certain clinical programs could be designed to address care for the entire family. As noted by one HIV-positive participant in Connecticut,

[The nurses] take care of me, I love the people, they go to your home, like they're my friends. Every time they say, how are you doing? Do you need anything? [ 75 , p. 117].

Doctors and nurses engaged in patient-centred care could help to establish bonds of trust and empower patients to overcome the stigma associated with taking medications [ 50 , 55 , 60 , 62 , 63 , 67 – 70 , 72 – 75 , 80 ]. Some participants described how medication regimens optimized for tolerability, with the fewest side effects and lowest pill burden, allowed them to minimize the possibility that others in the community might recognize their HIV status; this, in turn, decreased stigma and increased participants’ chances of successfully adhering to treatment [ 55 , 58 , 60 , 73 , 74 , 80 ]. Lastly, family-driven treatment programs designed to bring all HIV-positive members of the family into care were thought of as cultivating greater social support, reducing stigma and improving ART adherence [ 54 , 57 ].

Synthesis of quantitative studies

Data from the quantitative studies were consistent with these lines of inquiry. Our systematic search protocol identified 34 cross-sectional and seven longitudinal studies conducted between 1997 and 2009 that examined the association between either stigma or disclosure and ART adherence ( Table 2 ). These studies included data from 25,387 participants living in 18 different countries, with the largest proportion of studies (15/41 (37%)) based on data collected in the United States. The median number of participants was 300 (IQR, 201–439; range, 65–5760). Twenty-three studies (56%) measured HIV-related stigma, while 21 studies (51%) measured disclosure of seropositivity and three studies (7%) included a measure of both. Most of the studies examining the effect of HIV-related stigma (18/23 (78%)) on ART adherence employed a scale for which some evidence of reliability and/or validity had previously been obtained. In five studies, a multifactor scale was used (28%), while in others specific aspects of HIV-related stigma were measured, including enacted stigma (2/18 (11%)), disclosure concerns (3/18 (16%)), perceived stigma (3/18 (16%)) and internalized stigma (11/18 (61%)) (total percentage exceeds 100% as some studies administered more than one scale). Of the 18 studies that used a formal scale for measuring stigma, only three studies (17%) were conducted in a sub-Saharan African setting, and each of these used a newly developed stigma scale. The most widely used scale, administered in six studies, was the four-factor HIV Stigma Scale developed by Berger et al . [ 81 ]. To measure ART adherence, most studies used self-report (30/41 (73%)). Of these, slightly more than half (16/30 (53%)) employed a scale with previously demonstrated evidence of reliability or validity; the AIDS Clinical Trials Group measure developed by Chesney et al . [ 94 ] was the most frequently used among these (10/16 (63%)).

Studies reporting a quantitative measure of association between stigma or disclosure and ART adherence ( N =41)

Among the 41 studies, 25 (61%) reported a positive finding (i.e., showing that stigma was associated with reduced ART adherence or that disclosure was associated with improved adherence) while 16 (39%) reported a null finding. No studies reported that better ART adherence was paradoxically associated with greater intensity of stigma or less disclosure. A roughly equal proportion of studies conducted outside of the United States reported a positive finding compared to US-based studies (16/26 (62%) vs. 9/15 (60%); Pearson's χ 2 =0.01, p =0.92).

When the studies were disaggregated by study design, most of the cross-sectional studies (24/34 (71%)) reported a positive finding, while most of the longitudinal studies (6/7 (86%)) reported a null finding (Pearson's χ 2 =7.7; p =0.005). When disaggregated by exposure, these differences were slightly attenuated. Among studies examining the impact of a stigma variable on adherence, 15/20 (75%) cross-sectional studies vs. 1/3 (33%) longitudinal studies reported a positive finding (Pearson's χ 2 =2.14; p =0.14). Among studies examining the impact of disclosure on adherence, 11/17 (65%) cross-sectional studies vs. 0/4 (0%) longitudinal studies reported a positive finding (Pearson's χ 2 =5.4; p =0.02).

In three cross-sectional studies, the authors fit structural equation models to investigate the relationships between study variables. Diiorio et al . [ 92 ] concluded that the association between stigma and ART adherence was mediated by self-efficacy: perceived stigma eroded one's confidence about adhering to a treatment regimen, which in turn undermined treatment adherence. Rao et al . [ 124 ] did not measure self-efficacy but concluded that internalized stigma worsened symptoms of depression, like fatigue and concentration difficulties, which in turn compromised one's ability to adhere to a complex treatment regimen. In the study by Rotheram-Borus et al . [ 130 ], disclosure had a statistically significant association with ART adherence; the authors concluded that the effect was mediated principally by improvements in family function.

Conceptual model

To integrate our core findings from the qualitative and quantitative studies, we propose a conceptual model described in Figure 3 , citing areas of congruence between our empirically derived themes and theoretical frameworks previously published by others. In our model, structural and economic barriers associated with poverty undermine ART adherence. Enacted stigma undermines ART adherence through psychological processes specific to HIV-positive persons as well as through general psychological processes that are common to HIV-positive and HIV-negative persons alike. Stigma and poverty have mutually reinforcing relationships with each other, particularly in resource-limited settings [ 146 ]: stigma and social isolation have adverse economic impacts and, conversely, poverty worsens stigma by highlighting the economic aspects of HIV's perceived association with premature morbidity and mortality.

Conceptual model. This figure summarizes the findings of our meta-synthesis of 34 qualitative studies and analysis of 41 quantitative studies. The stigma of HIV was found to compromise ART adherence through general as well as group-specific psychological processes. Adaptive coping and social support were critical determinants of participants’ ability to overcome structural and economic barriers associated with poverty to successfully adhere to ART.

Internalized stigma may result when HIV-positive persons accept as valid the stigmatizing beliefs of the majority group. Because HIV infection is a potentially concealable stigma, HIV-positive persons may attempt to delay disclosure until disease progression renders further concealment impossible [ 147 ]. As elaborated in the stress process model [ 148 , 149 ] and as described by the participants in the studies summarized in this review, HIV-positive persons draw on adaptive coping and social support to minimize the harmful effects of life stressors.

Adaptive coping and social support partially moderate the harmful effects of poverty on adherence and are represented in the diagram as effect modifiers: in the presence of adaptive coping or strong social support networks, the negative impacts of poverty on adherence are reduced. In this regard our synthesis is consistent with the social support model described by Ware et al . [ 150 ], who found that HIV-positive persons in Nigeria, Tanzania and Uganda relied heavily on social support to overcome structural and economic barriers to care. The authors concluded that the stigma of HIV was feared specifically because it weakened relationships that proved to be critical for everyday survival. In addition, as supported by both the qualitative and the quantitative studies summarized in this review, these general and group-specific psychological processes can directly benefit or undermine ART adherence. For example, in the setting of enacted stigma, many HIV-positive participants adopted strategies of concealment, which led directly to treatment interruptions.

The qualitative studies we identified also suggested a number of extensions to the model, namely that certain factors can moderate the severity of enacted stigma and their ultimate impacts on ART adherence. One such factor is the health system, which can be configured to support patients and minimize the harmful influences of stigma on ART adherence. Although resistance to stigma has been described [ 151 ], in countries with fragile healthcare systems resistance to stigma can be weakened as HIV-positive persons struggle with the anxieties of uncertain and unstable access to treatment [ 80 ]. Another factor involves social norms, which were described by participants in the qualitative studies as potentially intensifying the harmful influences of stigma. HIV-positive persons who belonged to sexual minority groups or who had acquired HIV through socially unacceptable means, in particular, experienced greater stigma because their self-identities and behaviours were defined by the majority as being inconsistent with social norms.

In this systematic review of both qualitative and quantitative studies conducted among 26,715 HIV-positive persons living in 32 countries worldwide, we found that HIV-related stigma compromised ART adherence, primarily by undermining social support and adaptive coping. Our analysis is consistent with prior work demonstrating the importance of social ties in promoting adherence, particularly in resource-limited settings [ 33 , 152 ], and reflects the centrality of social integration to the experience of HIV-positive persons engaged in treatment. These themes are all the more prominent in settings of extreme poverty where treatment barriers are highly prevalent [ 8 , 14 , 153 ] and where social ties may be essential for survival [ 72 , 154 , 155 ]. Our findings have implications for public health strategies now being explored in high-HIV prevalence regions, such as universal voluntary testing with immediate treatment [ 36 ]. The evidence search protocol was not designed to identify studies examining the influences of stigma on HIV testing [ 156 , 157 ], pre-ART linkage to care [ 158 , 159 ], ART refusal [ 160 ], or other treatment- and care-related behaviours along the entire continuum of engagement in care [ 35 ]. However, HIV-related stigma has been shown to adversely affect these treatment- and care-related behaviours in a wide range of settings [ 35 , 161 – 166 ]. Optimization of the entire continuum of care is needed to maximize the public health impact of test-and-treat [ 34 ], thereby underscoring the importance of our findings.

Several limitations are important to consider when assessing this systematic review. First, it is well known that qualitative studies can be difficult to locate using conventional search strategies [ 167 ]. Although we adopted a purposefully broad search protocol that involved the full text review of 960 journal articles, unpublished dissertations and conference abstracts, we cannot exclude the possibility that we may have missed some relevant studies. Second, and related to the previous, we only identified one (qualitative) study from the UNAIDS Eastern Europe and Central Asia region. The HIV epidemic follows a different pattern in these countries, with concentrated epidemics most notably driven by injection drug use but also by prison overcrowding and unprotected sexual intercourse among men who have sex with men and sex workers [ 168 – 170 ]. For people belonging to these already marginalized subgroups, the stigma of their HIV serostatus is layered upon these pre-existing inequalities, thereby displacing them further downward in the status hierarchy. If we had been able to identify more studies from this region, it is possible that different themes could have been identified in the qualitative synthesis or that an even stronger association between stigma and ART adherence would have been described. Third, heterogeneity in the types of exposures and outcomes used in the quantitative studies precluded a formal meta-analysis. The vote counting-styled procedures we employed to synthesize their findings could not generate effect size estimates, are characterized by low statistical power [ 171 ] and cannot assess the magnitude of the purported relationship. As the field converges on the use of standardized and validated measures of stigma, disclosure and adherence, we expect that the methods of meta-analysis can be increasingly applied. Fourth, a greater proportion of longitudinal studies reported a null association between ART adherence and either stigma or disclosure. The difference appeared to be driven by studies examining the impact of disclosure on adherence. The single longitudinal study that documented a positive finding employed validated instruments to measure both stigma and self-reported ART adherence, but in general the relatively small number of longitudinal studies limited our ability to draw strong conclusions. Fifth, the majority of studies included in this review were assessed to be at risk of bias. A key reporting deficiency in the qualitative studies was lack of detail on the method of analysis. The majority of quantitative studies did not use validated exposure and outcome measures. Although these factors could exert unpredictable biases, we acknowledge they could have biased the qualitative and quantitative findings towards the null, with attendant effects on our conceptual model.

These caveats aside, the conceptual model that emerged from our synthesis of the literature has several important implications for programming and policy. At the individual level, interventions focused on enhancing social support by activating [ 172 ] or strengthening existing ties [ 173 , 174 ], or facilitating either of these through the encouragement of serostatus disclosure [ 175 – 177 ], may be expected to improve ART adherence. These behaviours may in turn yield health and mental health dividends. Although our meta-synthesis highlighted positive self-identity as an important factor related to greater adherence, more research is needed to understand the conditions under which HIV-related outcomes are better than expected despite the experiences of HIV- and stigma-related adversity (which can be thought of as being related to the concept of resilience [ 178 – 180 ]). It should be acknowledged here that social ties are not uniformly beneficial. This was observed in our data showing that all relationships were not necessarily described as supportive and that some study participants’ experiences suggested positive benefits from concealment. There have been few intervention studies where disclosure was emphasized as a primary outcome [ 181 ], but the outcomes of HIV serostatus disclosure are not unambiguously positive. Due to HIV-related stigma, significant others may react in negative ways after learning about a loved one's seropositivity [ 182 – 184 ]. In order to avoid these undesirable outcomes, interventions targeting disclosure behaviours should be sensitive to these potential negative consequences.

At the structural level, our model suggests that structural interventions (which target the context in which people live, including social ties, resources and institutions [ 185 ]) to enhance the capacity of health systems for providing quality care may help to minimize the adverse effects of HIV-related stigma on ART adherence. Structural interventions that strengthen the livelihoods of HIV-positive persons may also be a promising avenue for subverting HIV-related stigma, particularly in resource-limited settings where contributing to local solidarity networks is a core social function [ 186 ] and where the economic impacts of HIV and AIDS have exacerbated both the instrumental and symbolic aspects of stigma attached to HIV [ 187 ]. Castro and Farmer [ 188 ] advanced the argument that “structural violence determines, in large part, who suffers from AIDS-related stigma and discrimination” (p. 55). Although some observers have speculated that economic strengthening or livelihood interventions may play a role in reducing HIV-related stigma [ 146 ], to our knowledge these hypotheses have not been formally tested [ 189 , 190 ]. Related work suggests that these may spark a “virtuous” cycle: as stigma-related barriers are levelled and as HIV testing, treatment and other care-related behaviours become more widespread, the stigma of HIV and AIDS can be reduced [ 188 , 191 – 195 ].

Notably, our conceptual model also suggests several promising points of intervention to improve ART adherence that have not consistently yielded benefits when tested for their impacts on ART adherence. For example, several studies described how effective treatment of depression could potentially improve treatment adherence, consistent with the positive prevention model elaborated by Sikkema et al . [ 196 ]. However, depression intervention studies have yielded mixed findings to date with regards to HIV treatment adherence outcomes [ 197 – 199 ]. Likewise social support interventions should also be expected to improve adherence, but these have also proved inconclusive [ 200 – 203 ]. The lack of consistent findings may potentially be explained by the fact that interventions targeting intrapersonal or interpersonal processes fail to address the larger social forces undermining adherence to HIV treatment. We emphasize here that the concepts embedded in our conceptual model span multiple levels of analysis [ 204 , 205 ], ranging from intrapersonal processes (self-identity, coping), to interpersonal processes (social support, concealment), to structural factors (health systems, poverty, stigma). We therefore expect that interventions spanning multiple levels would yield the greatest impacts on reducing stigma [ 206 ], but these approaches have been rarely employed.

In this review of both qualitative and quantitative studies, we found that HIV-related stigma compromises ART adherence through general as well as group-specific psychological processes. Adaptive coping and social support were critical determinants of participants’ ability to overcome structural and economic barriers associated with poverty to successfully adhere to ART. Our conceptual model, which integrates the results of both quantitative and qualitative studies, suggests that the effects of stigma operate at multiple levels (intrapersonal, interpersonal and structural). Interventions to reduce stigma should target these multiple levels of influence in order to have maximum effectiveness on improving ART adherence.

Acknowledgements and funding

This study was funded in part by a Seed Grant from the Robert Wood Johnson Foundation Health and Society Scholars Program to ACT. The authors also acknowledge salary support from U.S. National Institutes of Health K23MH097667 (ITK), K23MH096651 (CP), K23MH079713 (SDW), K24MH087227 (DRB), and K23MH096620 (ACT). The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

To access the supplementary material to this article please see Supplementary Files under Article Tools online.

Competing interests

The authors declare that they have no competing interests.

Authors' contributions

ACT conceived the study. AER, AGO, and ACT acquired the data. ITK and ACT analyzed the data and prepared the initial draft of the manuscript. All authors assisted in interpretation of the data, revised the manuscript for important intellectual content, and approved the final version of the manuscript.

Three essays on HIV/AIDS related issues in Southern Africa

Add to collection, downloadable content.

• March 21, 2019
• Affiliation: Gillings School of Global Public Health, Department of Health Policy and Management
• For many years, the number of HIV/AIDS-related deaths in developing countries has been increasing at such an alarming rate that it is no longer whether it will be an epidemic, but rather how severe the epidemic will be. This study addresses three important aspects of the epidemic, including effects as well as causes. The first paper identifies the potential effects of HIV on labor market participation, which affects economic outcomes. Using Heckman selection models and Demographic and Health Survey data from Lesotho, Malawi, Swaziland, and Zimbabwe, results show a significant negative association between being HIV positive and currently working, as well as having worked in the past 12 months, for men and women. The second paper measures the spillover effects of fostering to help inform welfare policies. Linear probability models with fixed effects are estimated using data from the Cape Area Panel Study to quantify the effects of orphan fostering on the school enrollment, employment, and health status of young adults living in households which foster orphans. Results indicate that young adults from higher wealth quintile households which foster orphans have a higher probability of being enrolled in school. The third paper highlights the role played by parental investment in influencing concurrent sexual partners, a risk factor affecting the rate of HIV transmission, which can help make HIV prevention campaigns more effective. Results from multinomial logistic regressions on data from the Cape Area Panel Study show that financial support from fathers significantly decreased the probability of sexual concurrency among Black and Colored males, 11% of whom reported having been in sexually concurrent relationships. The findings have important implications for the macroeconomic stability and future growth of the countries under investigation. The first paper suggests a need for employment protection for HIV positive individuals and their households. The second paper indicates that further research into subsidies for families taking on orphans is warranted. The third paper recommends health education programs on the risks of sexual concurrency for young adults. By providing empirical evidence, HIV policies can be made more effective, thereby mitigating any negative impacts on vulnerable individuals and families.
• December 2010
• https://doi.org/10.17615/2fah-3f09
• Dissertation
• In Copyright
• "... in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the Department of Health Policy and Management of the Gillings School of Global Public Health."
• Stearns, Sally
• University of North Carolina at Chapel Hill
• Chapel Hill, NC
• Open access
• March 18, 2013

This work has no parents.

Select type of work

Master's papers.

Deposit your masters paper, project or other capstone work. Theses will be sent to the CDR automatically via ProQuest and do not need to be deposited.

Scholarly Articles and Book Chapters

Deposit a peer-reviewed article or book chapter. If you would like to deposit a poster, presentation, conference paper or white paper, use the “Scholarly Works” deposit form.

Undergraduate Honors Theses

Deposit your senior honors thesis.

Scholarly Journal, Newsletter or Book

Deposit a complete issue of a scholarly journal, newsletter or book. If you would like to deposit an article or book chapter, use the “Scholarly Articles and Book Chapters” deposit option.

Deposit your dataset. Datasets may be associated with an article or deposited separately.

Deposit your 3D objects, audio, images or video.

Poster, Presentation, Protocol or Paper

Deposit scholarly works such as posters, presentations, research protocols, conference papers or white papers. If you would like to deposit a peer-reviewed article or book chapter, use the “Scholarly Articles and Book Chapters” deposit option.

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

• View all journals
• My Account Login
• Explore content
• About the journal
• Publish with us
• Sign up for alerts
• Open access
• Published: 09 April 2024

Late presentations and missed opportunities among newly diagnosed HIV patients presenting to a specialty clinic in Lebanon

• Maya Mahmoud 1 ,
• Tala Ballouz 2 ,
• Chloe Lahoud 3 ,
• Jana Adnan 3 ,
• Paola Abi Habib 3 ,
• Reem Saab 3 ,
• Haya Farhat 3   na1 ,
• Mohammad El Hussein 3   na1 &
• Nesrine Rizk 4  

Scientific Reports volume  14 , Article number:  8296 ( 2024 ) Cite this article

174 Accesses

5 Altmetric

Metrics details

• HIV infections

Late presentation to medical care of individuals infected with the human immunodeficiency virus (HIV) is linked to poor outcomes and increased morbidity and mortality. Missed opportunities for a prompt diagnosis are frequently reported among late presenters. We aimed to estimate the proportion of late presenters and missed opportunities in diagnosis among newly diagnosed HIV-positive subjects presenting to a specialty clinic in Lebanon. This is a retrospective chart review of all newly diagnosed adult HIV-positive subjects presenting to clinic from 2012 to 2022. Demographic, laboratory, and clinical data were collected at initial HIV diagnosis or presentation to medical care. We defined late presentation as having a CD4 count < 350 or AIDS-defining event regardless of CD4 count. Advanced disease is defined as having a CD4 count below 200 cells/μL or the presence of an AIDS-defining illness, regardless of the CD4 count. A missed opportunity was defined as the presence of an indicator condition (IC) that suggests infection with HIV/AIDS during 3 years preceding the actual HIV diagnosis and not followed by a recommendation for HIV testing. The proportions for demographic, epidemiological, and clinical characteristics are calculated by excluding cases with missing information from the denominator. Our cohort included 150 subjects (92.7% males; 63.6% men who have sex with men (MSM); 33.3% heterosexuals; median age 30.5 years at diagnosis). 77 (51.3%) were late presenters and 53 (35.3% of all subjects, 68.8% of late presenters) had advanced HIV on presentation. Up to 76.5% of late presenters had a presentation with an HIV-related condition at a healthcare provider without getting HIV test within the previous 3 years. The most frequent ICs were weight loss, generalized lymphadenopathy, constitutional symptoms, and chronic idiopathic diarrhea. Overall mortality rate was 4% (6/150 individuals). All-cause mortality among those who presented with AIDS was 15.4% (6/39 subjects). In our setting, late presentations and missed opportunities for HIV diagnosis are common. In the Middle East, AIDS mortality remains high with a large gap in HIV testing. To effectively influence policies, comprehensive analyses should focus on estimating the preventable health and financial burdens of late HIV presentations. Another concern pertains to healthcare providers’ attitudes and competencies.

Similar content being viewed by others

Long COVID: major findings, mechanisms and recommendations

Hannah E. Davis, Lisa McCorkell, … Eric J. Topol

Long-term risk of psychiatric disorder and psychotropic prescription after SARS-CoV-2 infection among UK general population

Yunhe Wang, Binbin Su, … Daniel Prieto-Alhambra

Persistence in risk and effect of COVID-19 vaccination on long-term health consequences after SARS-CoV-2 infection

Ivan Chun Hang Lam, Ran Zhang, … Eric Yuk Fai Wan

Introduction

Antiretroviral therapy (ART) remains one of the most important medical advancements in the twentieth century. There is ample evidence that effective ART improves cellular immunity and subsequently reduces AIDS-related morbidity and mortality. However, achieving the full benefits of ART is dependent on early HIV detection and initiation of treatment 1 . Late diagnosis of HIV has been associated with poorer health outcomes 2 , increased healthcare costs, and risk of onward transmission 3 , 4 , 5 , 6 , 7 . Yet, even in countries with adequate HIV testing recommendations and healthcare resources, late presenters (defined as those with a CD4 count less than 350 cells/mm 3 or the presence of an AIDS-related illness at presentation) still constitute at least half of people living with HIV (PLWH) 8 , 9 , 10 , 11 and continue to be a hurdle to HIV eradication efforts globally 12 .

Several sociodemographic, psychosocial, and structural risk factors—at the patient, provider, and policy level—have been identified to be associated with late presentation. Fear of HIV-related stigma and discrimination, poor social support, and low risk perception are among some of the common patient-related factors preventing people from seeking timely testing. Providers have described insufficient time and resources, the laborious process of counseling and consent, as well as low provider-perceived risk of transmission as barriers to offering an HIV test 13 , 14 . Studies of missed opportunities for earlier diagnoses have shown that individuals with late presentations had often presented to healthcare settings several times, sometimes with indicator conditions (ICs) before an HIV test was eventually made 15 . Meanwhile, the presence of punitive laws and policies, such as the criminalization of sex work and same-sex sexual acts, in some countries deter individuals from seeking HIV testing 16 .

While several studies have been conducted worldwide to investigate late presentations and missed opportunities, only a few have been conducted in the Middle East and North Africa (MENA) region 15 , 17 , 18 , 19 . Although the region has seen significant improvements in HIV services, early HIV diagnosis remains a challenge 7 . Recent numbers from the region show that only 67% of PLWH are aware of their status, and a considerable proportion of individuals newly diagnosed with HIV present with an advanced stage 20 . In Lebanon, the first HIV case was reported in 1984 21 , which has evolved to reach approximately 3000 cases in 2021 22 . The prevalence rate of HIV in Lebanon is less than 0.1%, with indications of a concentrated epidemic among marginalized populations, especially MSM. The prevalence of missed diagnoses and late presentations in Lebanon is unknown.

In this study, we aimed to (1) assess the epidemiologic characteristics of subjects presenting to an HIV clinic in an academic medical center in Lebanon, (2) examine the rate and risk factors of late presentations, and (3) quantify missed opportunities among late presenters.

Materials and methods

Our study is a retrospective chart review of all newly diagnosed, treatment-naïve HIV-positive individuals, aged more than 18 years old, who presented to the American University of Beirut Medical Center (AUBMC) between January 1, 2012 and December 31, 2022. The AUBMC is an academic medical center in Lebanon with over 365 beds and a large outpatient department. The HIV-centered services started in 1984 and includes outpatient and inpatient services. The study was approved by the ethics committee, the Institutional Review Board (IRB) of the American University of Beirut Medical Center (AUBMC). The requirement for informed consent was waived by the Institutional Review Board at AUBMC due to the retrospective nature of the study. All research activities and methods were performed in accordance with the guidelines stated in the declaration of Helsinki and Belmont Report for research involving human subjects.

The subjects’ medical records were reviewed to collect demographic and clinical data including age at diagnosis, gender, nationality, sexual orientation, HIV transmission route, CD4 cell count, AIDS-defining conditions, and clinical indicator diseases at the time of diagnosis of HIV infection. MSM were defined as male participants reporting a homosexual or bisexual HIV-transmission mode and/or a sexual preference at the time of visit.

Outcome definitions

The primary outcome of interest was the proportion of individuals with a late presentation, defined as presenting for care with a CD4 cell count below 350 cells/μL at HIV diagnosis, or presenting with an AIDS-defining event regardless of the CD4 cell count 23 . Secondary outcomes included (1) factors associated with late presentation, (2) the proportion of individuals presenting with advanced HIV disease (AHD), defined as a CD4 count below 200 cells/μL or the presence of an AIDS-defining illness regardless of CD4 count 24 , and (3) missed opportunities for diagnoses, defined as failure to diagnose HIV in the presence of an IC that should have triggered testing for HIV as per guidelines 25 . Indicator conditions (IC) are classified as “AIDS defining illnesses” events and “other events” that are known to be associated with advanced HIV but not categorized as AIDS-defining 26 . Any IC that was present in the 3 years preceding HIV diagnosis, and not followed by a recommendation for HIV testing was considered a missed opportunity for earlier HIV diagnosis. ICs documented within 1 month of HIV diagnosis were considered related to the newly diagnosed disease and therefore not considered as a missed opportunity.

Statistical methods

We used descriptive statistics to analyze participant characteristics and outcomes of interest. Continuous variables are reported as median with interquartile range (IQR); categorical or ordinal variables as frequencies (N) and percentages (%). We explored the associations of several predictor variables with the outcome of late presentation using univariate and multivariable logistic regression model. Model selection was based on findings from other studies and age at diagnosis, gender, mode of transmission, and nationality were included. The calculated proportions for demographic, epidemiological, and clinical characteristics are derived after excluding cases with missing information from the denominator. We reported odds ratio (OR) with 95% confidence intervals (CI). All analyses were conducted in R (version 4.1, May 2021).

Participant characteristics at diagnosis

A total of 150 individuals newly diagnosed with HIV presented to our clinic between 2012 and 2022. The median age was 30.5 years (IQR 26–42 years), and the majority identified as men (N = 139, 92.7%) and Lebanese (N = 119, 79.3%) (Table 1 ). Most of the non-Lebanese individuals were Arab nationals (primarily originating from Iraq, Syria and Saudi Arabia) presenting to Lebanon for medical care. Overall, 82 (63.6%) individuals acquired HIV through MSM contact and 43 (33.3%) through heterosexual contact. Only 3.1% (N = 4) of patients reported IV drug use as the mode of HIV transmission.

Twenty-four (16%) of our newly diagnosed patients were aged more than 50 years old. Among them, 23 were males, and 1 was female. Within this sub-group, the median age at diagnosis was 58 years old. The median CD4 count was 197 cells/mm 3 , compared to 353 in our patients aged less than 50 years, with 13 (54.2%) patients presenting with a CD4 count less than 200. Fifteen were heterosexuals, and nine were men who have sex with men (Supplementary Table 1 ).

Late presentation

Overall, 77 individuals (51.3%) were late presenters and had a CD4 cell count of < 350 cells/mm 3 at the time of HIV diagnosis. Among those, 43 (55.8%) had a CD4 cell count of < 200 cells/mm 3 and 39 (50.6%) presented with AIDS-related conditions. A total of six individuals out of 150 died (15.4% of those presenting with an AIDS defining illness, 4.0% of all participants). The median CD4 cell count at HIV diagnosis was 506.5 (436.2–638.8) and 191.0 (67.0–258.0) cells/mm3 in non-late presenters and late presenters, respectively.

Late presentation was significantly associated with older age (OR 1.05, 95% CI 1.02–1.09, p = 0.003). Although an association with MSM transmission was observed, it did not reach statistical significance (OR 2.47, 95% CI 0.98–6.66, p = 0.062) (Supplementary Table 2 ).

Missed opportunities for earlier HIV testing

To identify indicator conditions, we reviewed medical records before the presentation and HIV diagnosis. Comprehensive data on indicator conditions were present in 51 of 77 charts of late presenters (66.2%). In total, there were 68 ICs among 39 participants (76.5%) in the preceding 3 years prior to HIV testing. Of the 39 participants with a missed opportunity for HIV diagnosis, 27 (69.2%) subjects had one or more AIDS-defining conditions and 9 (23.1%) subjects had ICs consistent with AIDS defining conditions. The most frequent ICs were unexplained weight loss (18/68, 26.5%), unexplained lymphadenopathy (9/68, 13.2%) unexplained fatigue and malaise (7/68, 10.3%), unexplained chronic diarrhea (6/68, 8.8%) and unexplained fever with no apparent etiology (6/68, 8.8%). Seven AIDS-defining ICs were identified. Those included recurrent pneumonia in five cases, four of which were confirmed to be pneumocystis jirovecii pneumonia (PCP) (Table 2 ).

Late presenters with advanced HIV

Among the 77 late presenters, 53 (68.8% of late presenters and 35.3% of all newly diagnosed) presented with an advanced HIV stage. Of these 53 participants, 39 (73.6%) had at least one AIDS defining illness at the time of diagnosis (44 conditions in total). The most frequent presentations were HIV wasting (16/44, 36.4%), PCP (9/44, 20.5%), candida esophagitis (4/44, 9.1%), cerebral toxoplasmosis (3/44, 6.8%), mycobacterium tuberculosis infection (2/44, 4.5%), Kaposi sarcoma (2/44, 4.5%), and Burkitt lymphoma (2/44, 4.5%) (Table 3 ).

Key findings

To the best of our knowledge, this is one of few studies in the MENA region assessing late presentations of HIV and missed opportunities for earlier diagnosis 17 , 18 , 19 , 27 , 28 . We found that more than half of the newly diagnosed subjects in our cohort (51.3%) were late presenters and 35.3% had advanced HIV disease on presentation. Mortality from HIV-related death was around 5% among our cohort while mortality from HIV in the world is approximately 2% 29 . Mortality among those presenting with AIDS in our cohort was approximately 16%. Almost three in four of late presenters had attended a medical facility for an IC in the 3 years preceding diagnosis; of these, almost one in four presented with an AIDS defining conditions without getting tested for HIV.

Evidence in context

As of December 2022, Lebanon had an estimated 2600 PLWH, with an incidence rate below 0.03% 30 . It is important to note that reported numbers likely underestimate the true count of PLWH in Lebanon, primarily due to reliance on passive reporting. Our findings correspond with those presented in the national report. In fact, the 2018 UNAIDS report revealed that 26% of individuals newly diagnosed with HIV in Lebanon presented at an advanced stage, characterized by an initial CD4 count below 200 cells/mm 3 31 . Few studies have described late presentations in the MENA region 32 , 33 . Our results are in line with data from Turkey and Iran. Studies conducted in Turkey found that 50–69% of the PLWH presented late to medical care, and 25–40% of subjects had advanced HIV at the time of diagnosis 26 , 34 , 35 , 36 , 37 . Similarly, a large retrospective cohort study conducted in Iran revealed a prevalence of late diagnosis in around 58.2% of subjects 17 . Surveillance studies from Yemen and Saudi Arabia showed higher prevalence of late HIV. The cohort study from Yemen showed that 83% of PLWH presented with a CD4 less than 350 and 52% with CD4 count less than 200 18 . The study from Saudi Arabia included 977 subjects and revealed that 20% of HIV positive subjects had a CD4 < 350 at diagnosis, and 50% presented with AIDS at diagnosis 19 . Late diagnosis indicates a gap in HIV testing 38 , 39 , which is a notable observation from the countries of the MENA region. In fact, according to the UNAIDS, by the end of 2018, more than half of PLWH in the MENA region were not aware of their seropositivity status 40 .

In our study, subjects who presented late were older and were men who had sex with men. Interestingly, women only represented 7.3% of our population (11 out of 150), indicating potential additional social obstacles that women encounter when seeking HIV care. This aligns with national data from Lebanon, indicating that the country faces a concentrated HIV epidemic among MSM, comprising 12% of cases 41 . While our study did not specifically address barriers to testing, the increased prevalence of late presenters among individuals aged more than 50 years and MSM in our cohort may be attributed to persistent barriers to adequate HIV testing 39 . This phenomenon could be linked to lower testing rates in these demographics, potentially influenced by social, cultural and legal barriers such as criminalization of homosexuality, stigma preventing adequate sexual education, lack of access to HIV testing and poor comprehensive sexual and reproductive health provision 42 . Around six out of ten people with HIV are from marginalized groups, including MSM, transgender individuals, IV drug users, sex workers, and their clients 43 . However, it is precisely these marginalized communities who encounter significant challenges in accessing HIV prevention, testing, treatment, and care services due to stigma and discrimination. We performed subgroup analyses for the subgroups late presenters with and without advanced disease (presented in Supplemental Table 3 ). As expected, the only difference was the CD4 count, 281 and 89 cells/mml for the without and with advanced disease, respectively.

PLWH in Lebanon continue to face social stigmatization and discrimination impacting different aspects of their lives. Particularly, the MSM population experiences homophobia and legal consequences, given that the Lebanese penal code prohibits sexual relations deemed "contradicting the laws of nature", punishable by up to a year in prison. Nevertheless, Lebanon is relatively more accepting of sexual rights compared to other countries in the MENA region, making it a favorable location for getting tested and treated for HIV 44 . HIV testing is available at medical laboratories, hospitals, or free of charge at Voluntary Counseling and Testing (VCT) centers in Lebanon. These centers are spread throughout the country, ensuring accessibility for the entire population, including refugees. Lebanon follows a comprehensive "treatment for all" strategy in addressing HIV/AIDS 45 . The Ministry of Public Health (MOPH) provides free treatment to over 60% of individuals aware of their HIV status including Syrian and Palestinian refugees.

There is a paucity of published data on missed opportunities in the MENA region. Similar to our findings, a study from Morocco reported that 69% of their 650-subject cohort had missed opportunities for HIV testing 15 . In contrast, studies from countries outside the MENA region such as Italy, Sweden, Germany and UK showed that 21–27% of newly diagnosed HIV subjects who sought medical care for ICs were not offered HIV testing 46 , 47 , 48 , 49 , 50 . The missed opportunity proportion is higher in our cohort. Limited awareness or knowledge among healthcare workers, along with negative perceptions and stigma associated with HIV within this group, may account for missed opportunities. Risk factors for HIV infection might not be adequately addressed by the treating physician. Firstly, subjects may not have disclosed their sexual activity, sexual orientation, and gender identity because of fear of discrimination and stigma. Secondly, healthcare workers with negative perceptions towards specific populations—sex workers, IV drug users, LGBTQ + community- and lack of adequate training regarding sexual health matters often fail to properly address the behaviors and sexual orientations of their subjects 51 .

Missed opportunities can lead to late detection and diagnosis of HIV with consequent associated complications including higher morbidity and mortality, altered response to antiretroviral therapy (ART) , increased cost of medical care, and HIV transmission within the community 46 , 52 , 53 . More efforts are needed to provide HIV-specific training and to eliminate stigma and discrimination related to HIV among healthcare providers.

Limitations

Our study has several limitations that may have influenced our findings. Firstly, being a single-center study could restrict the generalizability of our results to the broader Lebanese population or other populations. The retrospective nature of our study also posed limitations on data collection, particularly regarding socioeconomic aspects such as housing situation, poverty, and risky sexual practices, which could have offered additional insights into factors associated with late presentation and missed opportunities.

Moreover, there is a potential underestimation of the proportion of missed opportunities in our population. Our results rely on data collected from medical records, and other opportunities may have been present but not documented. Conversely, we cannot guarantee that verbal recommendations for HIV testing by healthcare providers were documented or, if refused by the subject, leading to a possible overestimation of missed opportunities.

The collected data also lacked crucial clinical details on management and follow-up. Notably, some subjects were discharged to home with hospice care, despite their initial diagnosis being conducted at our center. The initiation of Antiretroviral Therapy (ART) presents an intriguing aspect; however, our data collection did not encompass this specific information for all subjects. Similarly, details regarding the time to death and potential Immune Reconstitution Inflammatory Syndrome (IRIS) were not included in our data collection.

Unforeseen circumstances significantly impacted our study, especially after 2019, affecting clinic follow-up, detailed history, and thorough evaluation and diagnostic investigation. Lebanon faced political turmoil and economic failure starting in 2019, resulting in disruptions to clinical operations and ongoing follow-up. The subsequent COVID-19 pandemic further compounded the situation by imposing additional movement restrictions through lockdowns, leading to several subjects either being lost to follow-up or conducting virtual visits.

In our cohort, and likely in the MENA region, late presentation with HIV and missed opportunities for HIV diagnosis are common, even in instances where HIV testing is clearly indicated. To effectively influence policies, it is imperative to expand research efforts and conduct comprehensive analyses to quantify the proportion of late presenters and missed opportunities in the region, and to explore the factors contributing to these findings. Future studies should prioritize the estimation of the preventable financial burden associated with late HIV presentation resulting from diminished productivity and increased healthcare expenditure. Another concern pertaining to healthcare providers’ attitudes and competencies should trigger a serious reform in the healthcare provider curricula regarding sexual health and reproductive health issues.

Data availability

De-identified participant data that underlie the results reported in this article can be shared upon reasonable requests to the corresponding author. Data requestors will need to sign a data access agreement form.

Xie, Y., Zhu, J., Lan, G. & Ruan, Y. Benefits of early ART initiation on mortality among people with HIV. Lancet HIV 9 (6), e377 (2022).

Article   CAS   PubMed   Google Scholar  

Croxford, S. et al. Mortality and causes of death in people diagnosed with HIV in the era of highly active antiretroviral therapy compared with the general population: An analysis of a national observational cohort. Lancet Public Health 2 (1), e35–e46 (2017).

Article   PubMed   Google Scholar  

Ellis, S., Curtis, H. & Ong, E. L. HIV diagnoses and missed opportunities. Results of the British HIV Association (BHIVA) National Audit 2010. Clin. Med. 12 (5), 430 (2012).

Article   Google Scholar  

Belay, H., Alemseged, F., Angesom, T., Hintsa, S. & Abay, M. Effect of late HIV diagnosis on HIV-related mortality among adults in general hospitals of Central Zone Tigray, northern Ethiopia: A retrospective cohort study. HIV AIDS-Res. Palliat. Care 20 , 187–192 (2017).

Fleishman, J. A., Yehia, B. R., Moore, R. D., Gebo, K. A. & Network, H. R. The economic burden of late entry into medical care for patients with HIV infection. Med. Care 48 (12), 1071 (2010).

Article   PubMed   PubMed Central   Google Scholar  

UNAIDS. Global HIV & AIDS statistics—Fact sheet. 2022.

Shakiba, E. et al. Epidemiological features of HIV/AIDS in the Middle East and North Africa from 1990 to 2017. Int. J. STD AIDS 32 (3), 257–265 (2021).

Op de Coul, E. L. et al. Factors associated with presenting late or with advanced HIV disease in the Netherlands, 1996–2014: Results from a national observational cohort. BMJ Open 6 (1), 009688 (2016).

Petrakis, V. et al. Late presenters of HIV infection in an HIV unit of a tertiary university hospital in a rural region of Greece. AIDS Res. Hum. Retroviruses 36 (7), 601–605 (2020).

Belaunzaran-Zamudio, P. F. et al. The population impact of late presentation with advanced HIV disease and delayed antiretroviral therapy in adults receiving HIV care in Latin America. Am. J. Epidemiol. 189 (6), 564–572 (2020).

Shen, Y., Wang, J., Qi, T., Wang, Z. & Lu, H. Trends in clinical characteristics of HIV-infected patients initiating antiretroviral therapy in Shanghai from 2006 to 2011. Int. J. STD AIDS. 25 (7), 504–510 (2014).

Organization, W. H. Consolidated Guidelines on HIV Prevention, Testing, Treatment, Service Delivery and Monitoring: Recommendations for a Public Health Approach (World Health Organization, 2021).

Google Scholar  

Tan, K. R. Perceived barriers and facilitators to routine HIV screening/testing in primary care settings among healthcare providers in the Southeastern United States: A systematic review of the literature; 2016.

Leblanc, N. M. Providers' Perceptions of Couples HIV Testing and Counseling in South Florida: A Qualitative Study (University of Miami, 2016).

Marih, L. et al. Missed opportunities for HIV testing in patients newly diagnosed with HIV in Morocco. BMC Infect. Dis. 21 (1), 48 (2021).

Kavanagh, M. M. et al. Law, criminalisation and HIV in the world: Have countries that criminalise achieved more or less successful pandemic response?. BMJ Glob. Health 6 (8), e006315 (2021).

Mohammadi, Y., Mirzaei, M., Shirmohammadi-Khorram, N. & Farhadian, M. Identifying risk factors for late HIV diagnosis and survival analysis of people living with HIV/AIDS in Iran (1987–2016). BMC Infect. Dis. 21 (1), 390 (2021).

Nabih, M. F., Puteh, S. E. W. & Nur, A. M. Evaluation of selected outcomes of combination antiretroviral therapy: Yemen cohort retrospective descriptive studies. Sci. Rep. 9 (1), 19923 (2019).

Article   ADS   CAS   PubMed   PubMed Central   Google Scholar  

Memish, Z. A. et al. Antiretroviral therapy, CD4, viral load, and disease stage in HIV patients in Saudi Arabia: A 2001–2013 cross-sectional study. J. Infect. Dev. Ctries 9 (7), 765–769 (2015).

UNAIDS. The Path that Ends AIDS; 2023.

Mokhbat, J. E. I. N., Abdulkarim, F., Kulaylat-Shatila, M. & Salem, Z. The acquired immunodeficiency syndrome: Report of the first cases in Lebanon and review of the literature. J. Med. Liban. 35 , 295–311 (1985).

UNAIDS. Lebanon Fact Sheet; 2022.

Antinori, A. et al. Late presentation of HIV infection: A consensus definition. HIV Med. 12 (1), 61–64 (2011).

Boyd, A. T. et al. Addressing advanced HIV disease and mortality in global HIV programming. AIDS Res. Ther. 17 (1), 40 (2020).

HIV in Europe. HIV indicator conditions: Guidance for implementing HIV testing in adults in health care settings. Copenhagen: Copenhagen University; 2012. http://www.eurotest.org/Portals/0/Documents/Guidance.pdf.pdf?ver=2014-01-29-113626-000 . Accessed Jan 2024.

Karaosmanoğlu, H. K. M. B. et al. Late presentation among patients with human immunodeficiency virus infection in Turkey. Cent. Eur. J. Public Health 27 (3), 229–234. https://doi.org/10.21101/cejph.a5416 (2019).

Shokoohi, M. et al. Remaining gap in HIV testing uptake among female sex workers in Iran. AIDS Behav. 21 (8), 2401–2411 (2017).

Elgalib, A. et al. Predictors of late presentation and advanced HIV disease among people living with HIV in Oman (2000–2019). BMC Public Health 21 (1), 2029 (2021).

Article   CAS   PubMed   PubMed Central   Google Scholar  

Global HIV & AIDS statistics—Fact sheet. https://www.unaids.org/en/resources/fact-sheet .

. UNAIDS Country factsheets LEBANON 2022.

UNAIDS Country Progress Report—Lebanon; 2019.

Shokoohi, M. et al. Remaining gap in HIV testing uptake among female sex workers in Iran. AIDS Behav. 21 , 2401–2411 (2017).

Elgalib, A. et al. Predictors of late presentation and advanced HIV disease among people living with HIV in Oman (2000–2019). BMC Public Health 21 (1), 1–8 (2021).

Aydin, O. A., Karaosmanoglu, H. K., Korkusuz, R. & Nazlican, O. Toxoplasma gondii IgG seroprevalence in HIV/AIDS patients. Turk. Parazitol. Derg. 35 (2), 65–67 (2011).

Karaosmanoglu, H. K., Aydin, O. A. & Nazlican, O. Profile of HIV/AIDS patients in a tertiary hospital in Istanbul, Turkey. HIV Clin. Trials 12 (2), 104–108 (2011).

Aydin, ÖA. K. H., Korkusuz, R., Özeren, M. & Özcan, N. Mucocutaneous manifestations and the relationship to CD4 lymphocyte counts among Turkish HIV/AIDS patients in Istanbul, Turkey. Turk. J. Med. Sci. 45 (1), 89–92 (2015).

Yemisen, M. A. O. et al. Epidemiological profile of naive HIV-1/AIDS patients in Istanbul: The largest case series from Turkey. Curr. HIV Res. 12 (1), 60–64 (2014).

Jeong, S. J. et al. Late presentation into care of HIV disease and its associated factors in Asia: Results of TAHOD. AIDS Res. Hum. Retroviruses 32 (3), 255–261 (2016).

Late Presentation Working Groups in Euro S, Cohere. Estimating the burden of HIV late presentation and its attributable morbidity and mortality across Europe 2010–2016. BMC Infect. Dis. 20 (1), 728 (2020).

https://www.middleeastmedicalportal.com/hiv-and-aids-in-the-middle-east-north-africa-mena-by-avert-org/ .

UNAIDS Country Progress Report-Lebanon; 2020.

Assi, A. et al. Prevalence of HIV and other sexually transmitted infections and their association with sexual practices and substance use among 2238 MSM in Lebanon. Sci. Rep. 9 (1), 15142 (2019).

Article   ADS   PubMed   PubMed Central   Google Scholar  

https://www.unaids.org/sites/default/files/media_asset/JC3032_AIDS_Data_book_2021_En.pdf . UNAIDS data 2021.

Wilson Dib, R. et al. HIV in Lebanon: Reasons for testing, engagement in care, and outcomes in Patients with Newly diagnosed HIV infections. AIDS Behav. 24 (8), 2290–2298 (2020).

UNAIDS Country Progress Report; 2014. https://www.unaidsorg/sites/default/files/country/documents/LBN_narrative_report_2014pdf .

Ellis, S., Curtis, H., Ong, E. L., British, H. I. V. A., Audit BC, Standards s-c. HIV diagnoses and missed opportunities. Results of the British HIV Association (BHIVA) National Audit 2010. Clin. Med. (Lond.) 12 (5), 430–434 (2012).

Scognamiglio, P. et al. The potential impact of routine testing of individuals with HIV indicator diseases in order to prevent late HIV diagnosis. BMC Infect. Dis. 13 , 473 (2013).

Brannstrom, J. et al. Deficiencies in the health care system contribute to a high rate of late HIV diagnosis in Sweden. HIV Med. 17 (6), 425–435 (2016).

Tominski, D. et al. The late-presenting HIV-infected patient 30 years after the introduction of HIV testing: Spectrum of opportunistic diseases and missed opportunities for early diagnosis. HIV Med. 18 (2), 125–132 (2017).

van den Bogaart, L. et al. Overlooked cases of HIV infection: An Italian tale of missed diagnostic opportunities. Eur. J. Intern. Med. 73 , 30–35 (2020).

Ballouz, T. G. N. & Rizk, N. HIV-related stigma among health-care workers in the MENA region. Lancet HIV 7 (5), e311–e313. https://doi.org/10.1016/S2352-3018(19)30401-1 (2020) ( Epub 2020 Jan 9 ).

Belay, H., Alemseged, F., Angesom, T., Hintsa, S. & Abay, M. Effect of late HIV diagnosis on HIV-related mortality among adults in general hospitals of Central Zone Tigray, northern Ethiopia: A retrospective cohort study. HIV AIDS (Auckl). 9 , 187–192 (2017).

PubMed   PubMed Central   Google Scholar  

Fleishman, J. A. Y. B., Moore, R. D. & Gebo, K. A. HIV research network. The economic burden of late entry into medical care for patients with HIV infection. Med. Care 48 (12), 1071–1079. https://doi.org/10.1097/MLR0b013e3181f81c4a (2010).

Download references

Author information

These authors contributed equally: Haya Farhat and Mohammad El Hussein.

Authors and Affiliations

Department of Internal Medicine, American University of Beirut Medical Center, Beirut, Lebanon

Maya Mahmoud

Epidemiology, Biostatistics and Prevention Institute (EBPI), University of Zurich (UZH), Zurich, Switzerland

Tala Ballouz

Faculty of Medicine, American University of Beirut Medical Center, Beirut, Lebanon

Chloe Lahoud, Jana Adnan, Paola Abi Habib, Reem Saab, Haya Farhat & Mohammad El Hussein

Division of Infectious Diseases, Department of Internal Medicine, American University of Beirut Medical Center, Riad El Solh, Beirut, 1107 2020, Lebanon

Nesrine Rizk

You can also search for this author in PubMed   Google Scholar

Contributions

M.M: data collection, data interpretation, manuscript writing, manuscript review and editing. T.B: manuscript writing and conceptualization, data analysis and interpretation. C.L: data collection, manuscript review and editing. J.A: data collection, manuscript review and editing. P.A.H: data collection, manuscript review and editing. R.S: data collection, manuscript review and editing. H.F: data collection, manuscript review and editing. M.E.H: data collection. N.R: manuscript writing, manuscript review and editing, and conceptualization.

Corresponding author

Correspondence to Nesrine Rizk .

Ethics declarations

Competing interests.

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.

Supplementary Information

Supplementary tables., rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ .

Reprints and permissions

About this article

Cite this article.

Mahmoud, M., Ballouz, T., Lahoud, C. et al. Late presentations and missed opportunities among newly diagnosed HIV patients presenting to a specialty clinic in Lebanon. Sci Rep 14 , 8296 (2024). https://doi.org/10.1038/s41598-024-55277-1

Download citation

Received : 04 September 2023

Accepted : 22 February 2024

Published : 09 April 2024

DOI : https://doi.org/10.1038/s41598-024-55277-1

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Late presenters
• Missed opportunities
• AIDS-defining conditions

By submitting a comment you agree to abide by our Terms and Community Guidelines . If you find something abusive or that does not comply with our terms or guidelines please flag it as inappropriate.

Quick links

• Explore articles by subject
• Guide to authors
• Editorial policies

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.