“I Haven’t Told Other People. I Want to Keep My Dignity”: HIV Related Stigma Among the Elderly in Uganda

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Abstract

Purpose

Numerous studies focus on stigma, HIV disclosure’s impact on treatment compliance, especially in younger groups. Limited research exists about older individuals. We therefore explored issues related to disclosure of HIV status and HIV-related stigma in the elderly.

Patients and Methods

This was an exploratory qualitative study, employing Straussian Grounded Theory. We enrolled individuals aged 60 and above, living with HIV and receiving care from the Infectious Disease Institute, Uganda. We conducted 4 focus group discussions to explore HIV related stigma and self-disclosure in participants using questionnaires that we had developed and pilot-tested. The discussions were audio recorded, transcribed and translated. Using NVivo software package for qualitative analysis, we developed primary and secondary nodes and subsequent emergent themes.

Results

We recruited 38 participants for the focus group discussions. Emergent themes were: types of disclosure, reasons for disclosure or non-disclosure, who was disclosed to and the reasons for disclosure, experienced stigma and resolving dissonance in non-disclosure.

Conclusion

Our findings reveal HIV-related challenges for the elderly due to stigma and disclosure. There is need to combat this situation by normalizing societal expectations, roles and sexuality in the elderly as a way of fighting HIV/AIDS related stigma.

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Most cited references 16

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

Ingrid T. Katz, Annemarie Ryu, Afiachukwu Onuegbu … (2013)

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. Methods We searched nine electronic databases for published and unpublished literature, with no language restrictions.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. Results 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.

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Health-related stigma.

Graham Scambler (2009)

The concept of stigma, denoting relations of shame, has a long ancestry and has from the earliest times been associated with deviations from the 'normal', including, in various times and places, deviations from normative prescriptions of acceptable states of being for self and others. This paper dwells on modern social formations and offers conceptual and theoretical pointers towards a more convincing contemporary sociology of health-related stigma. It starts with an appreciation and critique of Goffman's benchmark sensitisation and traces his influence on the personal tragedy or deviance paradigm dominant in the medical sociology from the 1970s. To allow for the development of an argument, the focus here is on specific types of disorder--principally, epilepsy and HIV--rather than the research literature as a whole. Brief and critical consideration is given to attempts to operationalise or otherwise 'measure' health-related stigma. The advocacy of a rival oppression paradigm by disability theorists from the 1980s, notably through re-workings of the social model of disability, is addressed. It is suggested that we are now in a position to learn and move on from this paradigm 'clash'. A re-framing of notions of relations of stigma, signalling shame, and relations of deviance, signalling blame, is proposed. This framework, and the positing of a variable and changing dynamic between cultural norms of shame and blame--always embedded in social structures of class, command, gender, ethnicity and so on--is utilised to explore recent approaches to health stigma reduction programmes.

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Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies.

Jonathan Sterne (2008)

Combination antiretroviral therapy has led to significant increases in survival and quality of life, but at a population-level the effect on life expectancy is not well understood. Our objective was to compare changes in mortality and life expectancy among HIV-positive individuals on combination antiretroviral therapy. The Antiretroviral Therapy Cohort Collaboration is a multinational collaboration of HIV cohort studies in Europe and North America. Patients were included in this analysis if they were aged 16 years or over and antiretroviral-naive when initiating combination therapy. We constructed abridged life tables to estimate life expectancies for individuals on combination antiretroviral therapy in 1996-99, 2000-02, and 2003-05, and stratified by sex, baseline CD4 cell count, and history of injecting drug use. The average number of years remaining to be lived by those treated with combination antiretroviral therapy at 20 and 35 years of age was estimated. Potential years of life lost from 20 to 64 years of age and crude mortality rates were also calculated. 18 587, 13 914, and 10 854 eligible patients initiated combination antiretroviral therapy in 1996-99, 2000-02, and 2003-05, respectively. 2056 (4.7%) deaths were observed during the study period, with crude mortality rates decreasing from 16.3 deaths per 1000 person-years in 1996-99 to 10.0 deaths per 1000 person-years in 2003-05. Potential years of life lost per 1000 person-years also decreased over the same time, from 366 to 189 years. Life expectancy at age 20 years increased from 36.1 (SE 0.6) years to 49.4 (0.5) years. Women had higher life expectancies than did men. Patients with presumed transmission via injecting drug use had lower life expectancies than did those from other transmission groups (32.6 [1.1] years vs 44.7 [0.3] years in 2003-05). Life expectancy was lower in patients with lower baseline CD4 cell counts than in those with higher baseline counts (32.4 [1.1] years for CD4 cell counts below 100 cells per muL vs 50.4 [0.4] years for counts of 200 cells per muL or more). Life expectancy in HIV-infected patients treated with combination antiretroviral therapy increased between 1996 and 2005, although there is considerable variability between subgroups of patients. The average number of years remaining to be lived at age 20 years was about two-thirds of that in the general population in these countries.

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Author and article information

Journal

Journal ID (nlm-ta): HIV AIDS (Auckl)

Journal ID (iso-abbrev): HIV AIDS (Auckl)

Journal ID (publisher-id): hiv

Title: HIV/AIDS (Auckland, N.Z.)

Publisher: Dove

ISSN (Electronic): 1179-1373

Publication date (Electronic): 21 December 2024

Publication date Collection: 2024

Volume: 16

Pages: 477-484

Affiliations

[1 ]Department of Psychiatry, Makerere University College of Health Sciences , Kampala, Uganda

[2 ]Infectious Diseases Institute, Makerere University College of Health Sciences , Kampala, Uganda

[3 ]Centre for Mental Health, National University of Rwanda , Kigali, Rwanda

Author notes

Correspondence: Noeline Nakasujja, Department of Psychiatry, Makerere University College of Health Sciences , P.O. Box 7072, Kampala, Uganda, Email drnoeline@yahoo.com

[*]

These authors contributed equally to this work

Author information

Noeline Nakasujja http://orcid.org/0000-0002-8163-4376

Isaac Byangire Lwanga http://orcid.org/0000-0003-2961-9686

Article

Publisher ID: 480355

DOI: 10.2147/HIV.S480355

PMC ID: 11669272

PubMed ID: 39722882

SO-VID: 6345665e-1bf8-4c09-8379-5830883687ec

License:

This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

History

Date received : 29 May 2024

Date accepted : 14 November 2024

Page count

Figures: 0, Tables: 2, References: 17, Pages: 8

Funding

The work was supported by Training Health Researchers into Vocational Excellence (THRiVE) in East Africa Consortium, grant number 087540, funded by Wellcome Trust.

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“I Haven’t Told Other People. I Want to Keep My Dignity”: HIV Related Stigma Among the Elderly in Uganda [Letter]
Authors: Fandro Armando Tasijawa, Joan Herly Herwawan

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“I Haven’t Told Other People. I Want to Keep My Dignity”: HIV Related Stigma Among the Elderly in Uganda

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Abstract

Purpose

Patients and Methods

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Conclusion

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HIV Self-Testing

Most cited references 16

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

Health-related stigma.

Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies.

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