African Health Sciences, Vol. 7, No. 1, March, 2007, pp. 55-60
Examining the actions of faith-based organizations and their influence on HIV/AIDS-related stigma: A case study of Uganda
Erasmus Otolok-Tanga1, Lynn Atuyambe1, Colleen K. Murphy2, Karin E. Ringheim3, Sara Woldehanna4
1 Makerere University, Institute of Public Health, Department of Community Health and Behavioural Sciences
Correspondence Erasmus Otolok-Tanga Makerere University Institute of Public Health P. O. Box 7072 Kampala, Uganda Tel: 256 772 490961 Fax: 256 41 531807 E-mail: firstname.lastname@example.org, email@example.com, firstname.lastname@example.org
Code Number: hs07012
Background: Stigma and discrimination are widely recognized as factors that fuel the HIV/AIDS epidemic. Uganda’s success in combating HIV/AIDS has been attributed to a number of factors, including political, religious and societal engagement and openness – actors that combat stigma and assist prevention efforts.
Key words: HIV/AIDS, Faith-Based Organizations, Religion, Stigma, Discrimination,Vulnerability, Uganda
Stigma is a persistent influence on HIV/AIDS, inflicting substantial personal, social and economic costs on individuals, friends and families, communities and nations.1,2 Fueled by deeply-felt responses including fear of infection, moral outrage, and shame, those living with HIV/AIDS may be shunned, denied care and support, or avoid life-saving medical care out of fear of rejection.3 Moreover, HIV/AIDS-related stigma and resulting discriminatory acts create circumstances that fuel the spread of HIV.4 It has been observed that religious doctrines and moral positions by religious leadership have helped create and support perceptions that those infected have sinned and deserve their punishment, thus increasing the stigma associated with HIV/AIDS.5 Yet, religious leaders have also been lauded for using their influential voices to mitigate stigma and discrimination against those infected and affected by the virus that causes AIDS.6, 7
Uganda, an early epicenter of the disease, is now frequently cited as sub-Saharan Africa’s HIV/AIDS“success story” in response to its dramatic reduction in HIV/AIDS prevalence.8 HIV prevalence among pregnant women in Kampala fell from 31% to 6.2% between 1990 and 2003,9 while among army recruits aged 18 to 21 years, prevalence rates decreased by 12% over 5 years.10 Among a number of theories about Uganda’s success are high level of political commitment to openness about the epidemic, involvement of all segments of society, and the “ABC” strategy — Abstain, Be faithful or use Condoms.11,12
Regardless of strategy or vehicle responsible for Uganda’s achievement, religious organizations are recognized for playing an important role in preventing new infections in Uganda. 6, 7 Uganda adopted a multisectoral approach in the fight against HIV/AIDS with an active participation among faith-based organizations as early as 1992.13 Nearly all of its major religious institutions, both Islamic and Christian, have been actively engaged in the country’s struggle with HIV/AIDS.4,6 While there is general agreement supporting the critical role of the faith community in the dramatic reductions in Uganda’s HIV prevalence, a better understanding of what faith communities are doing with regard to addressing the epidemic is critical.
Our study aimed to explore perceptions of Uganda-based key decision-makers about the past, present and optimal future roles of FBOs in HIV/AIDS work, including actions to promote or dissuade stigma and discrimination.We analyzed FBO performance and contributions in relation to priorities established in the Global Strategy Framework on HIV/AIDS, an internationally-recognized, consensus-based strategy developed by United Nations Member States.14 This strategy encourages simultaneous efforts to reduce risk of HIV transmission, lessen vulnerability to HIV/AIDS, especially among women and other high risk groups, and mitigate the impact of the disease by providing care, treatment and support to those affected.
A key component of the overall strategy is to combat AIDS-related stigma that undermines the success of all three approaches. It is hoped that findings from this study will help FBOs to better understand how they are perceived, and how people in a variety of sectors think that FBOs can most usefully collaborate. Armed with this information, both faith and secular groups can capitalize on perceived strengths and address perceived weaknesses of FBOs to improve the collective response to reducing stigma and improving the lives of those living with the virus.
Interviewees were purposively sampled using the “snowball technique,”1 beginning with a list of potential informants identified from a background information search and references provided by other key actors in the field of HIV/AIDS. From a database of nearly 150 potential key informants representing 11 different sectors, 30 senior-level individuals actively engaged in HIV/AIDS programming, who play a leadership role in their institutions were carefully selected as key informants. Those surveyed included government officials, researchers, health service providers, national AIDS control program officers, representatives from non-governmental organizations (NGOs), pharmaceutical representatives, and leaders from major FBOs in the country.
Interview Framework and Procedures
By basing the interview questions on The Global Strategy Framework on HIV/AIDS, we sought to highlight and explore the “guiding principles and leadership commitments that together form the basis for a successful response to the epidemic,”14 as they relate to faith-based organizations.
1 A technique for finding research subjects in which an informant gives the researcher the name of another, who in turn provides the name of a third, and so on.
We defined “faith-based organization” broadly to include the range from places of worship to development organizations with a mission of faith. This decision was taken for practical reasons in that the activities of the diverse faith-based actors in the country would be difficult to separate.
Semi-structured, face-to-face interviews were conducted from September to December 2003. Lasting on average 60 minutes, interviews examined key informants’ perceptions of the extent of FBO leadership, collaboration and contribution to strategies to reduce risk, decrease vulnerability, and mitigate the impact of HIV/AIDS. Interviews were conducted in the preferred language of the interviewee and were audio taped after permission was obtained.Tapes were transcribed verbatim and translated, if necessary, into English. Permission to carry out the study was obtained from the Uganda National Council of Science and Technology (NCST). Informed consent was obtained from all respondents.
We aimed to reduce bias when analyzing transcripts by “blinding” ourselves to the identity of the informant through the assignment of a number to each informant. Using qualitative analysis software, Atlas.ti, we coded all electronic transcripts with predetermined categories that referred to the general topic(s) that informants discussed. We then divided transcripts into sub-groups according to the sector (‘FBO’ and ‘Non-FBO’). Data-derived codes based on themes emerging from data were identified from the typed text data.
For the purpose of this paper, we used a combination of codes to compile quotations that addressed the question, “What actions have FBO taken that promote or dissuade stigma and discrimination?”We studied our informants’ responses in terms of FBO contributions, the conditions that define their participation, and the consequences of their involvement.Themes that resonated among a critical mass were further systematically analyzed for commonalities, variations and disagreements. Lastly, we contrasted and compared these themes across sectors to synthesize our findings. The analysis is limited to what our key informants perceive and does not aim to validate the objectivity of these perceptions.
The findings are presented in two sections; the first relating to FBO actions perceived as promoting stigma, the second focusing on actions taken by FBOs to challenge stigmatizing behavior. Emerging themes for the former include the use of stigmatizing language and messages; deeply-entrenched societal attitudes and norms; and limited involvement of persons living with HIV/ AIDS (PLWHAs). The latter section highlights themes focusing on the mitigation of stigma including increased knowledge; improved collaboration, inclusion and mobilization; and institutional capacity.All themes reflect an overarching consensus among both non-FBO and FBO respondents.
FBO actions facilitating stigma
Stigmatizing Language and Messages
There was agreement among key informants that the language historically used by FBO leadership had often supported and propagated discriminatory views towards PLWHAs within their religious community.
FBOs were also identified as sending out mixed messages in line with the Christian concept of ‘hate the sin, love the sinner.’ Respondents noted that while FBOs were largely unaware of the ill-effects of such language, these messages were as stigmatizing as more deliberate condemnation.
Deeply-Entrenched Attitudes and Norms
Informants cited the use of religious teachings to ascribe blame without regard to deeply entrenched societal vulnerabilities. According to respondents, many of the traditional religious solutions offered by FBOs did not address the significant HIV acquisition risks faced by vulnerable groups, including women.
Moralistic attitudes among various FBOs were also seen to foster both self-stigma among PLWHAs, as well as anger and withdrawal from religious activities.
FBOs were cited for equating positive behavior change to being a ‘good Christian’, sending erroneous signals to its members. Religious organizations were also noted for embracing select elements of behavior change, eschewing other more sensitive elements.
Limited Involvement of PLWHAs
According to most key informants, there has been limited involvement of PLWHAs in FBO activities. This lack of participation, often attributed to the fear of “breaking the silence,” was cited by respondents as further fostering stigma and discrimination within both the organization and greater community.
FBO Actions Mitigating Stigma
As the epidemic has evolved in Uganda, respondents noted the changing attitudes of FBOs towards those with HIV/ AIDS. Informants applauded FBOs for accepting HIV/AIDS as a problem without “borders” and for sharing this message throughout their respective organizations.
Through participation in HIV/AIDS trainings, informants stated that FBOs have been armed with better information to fight discrimination and stigma within their institutions and congregations.
Improved Collaboration, Inclusion and Mobilization
FBOs were reported as increasingly involving PLWHAs in their activities as well as being supportive to those that declare their HIV status. FBOs were applauded for their more recent support of PLWHA networks. All key informants interviewed cited improved FBO networking and collaboration with community-based organizations founded or led by people living with HIV/AIDS.
Most key informants were optimistic about these developments, particularly the involvement of religious persons who are positive.
Key informants also acknowledged that community mobilization efforts of FBOs have led to increased uptake of prevention services such as voluntary counseling and testing. Through these efforts, as well as educational and outreach programs, FBOs were observed to contribute to reducing stigma and discrimination in the community.
FBOs were noted as possessing a comparative advantage in their ability to address stigma through their existing social mobilization channels. As trusted entities within the communities, FBOs were cited for their significant ability to influence the cultural norms of their congregations.
FBOs were also cited as addressing HIV/AIDSrelated stigma and discrimination through their institutions that provide care and support to PLWHAs. FBOs’ post-test clubs, homecare and income generating activities and support to orphans and widows were referenced as important programs in the fight against stigma and discrimination.
HIV/AIDS-related stigma and discrimination are multilayered, building upon and reinforcing negative connotations through the association of HIV/AIDS with already marginalized behaviours.15 Our findings characterize FBOs as contributors to HIV/AIDS-related stigma and discrimination at the early stages of the HIV/AIDS epidemic in Uganda. Respondents attributed this to inadequate knowledge and misconceptions about HIV/AIDS transmission and fear relating to socially-sensitive issues including sexuality, disease and death. However, Uganda’s FBOs have moved from being promoters of stigma to institutions at the forefront of dissuading HIV/AIDS-related stigma and discrimination. Increased knowledge and understanding of HIV/AIDS among FBOs has aided this transition. Further,greater openness about one’s HIV status among both clergy and congregation members, and the involvement of PLWHAs in prevention, care and advocacy efforts, characterize the changing attitudes and efforts among FBOs to stem HIV/AIDS-related stigma and discrimination.
The findings reinforce the linkages between stigma and the reproduction of social differences. Parker and Aggleton15 note that stigma is deeply rooted, operating within values of everyday life. Stigma plays into and reinforces social inequalities, which have been both directly and indirectly promoted by the actions of some FBOs.Therefore, addressing the actions and attitudes of FBOs are considered important and viable options for many,16 including the respondents in this sample. The factors identified by participants in this study (e.g., language, lack of correct information, fear and harmful attitudes) that led FBOs to contribute to and be associated with HIV/AIDS-related stigma and discrimination are consistent with findings reported elsewhere.17, 18,19 Yet, our study also suggests that the more recent actions of FBOs have promoted tolerance.
However, Uganda’s fight against HIV/AIDS-related stigma has yet to be won. Roughly half of men and women surveyed by the Uganda Ministry of Health in 2005 said they would prefer to keep secret the fact that a family member had contracted HIV.9 Our findings support the notion that bringing FBO leadership to the fore in combating stigma, utilizing their extensive networks and opportunities to reach communities, would enable FBOs to play a greater role in ending the marginalization and secrecy that have contributed to the spread of HIV/AIDS around the world, and help further the successes that have been achieved in Uganda.
We would like to express our gratitude to all those working in the field of HIV/AIDS especially the busy professionals who provided the interview and insights that made this study possible.Additionally we would like to thank Susan newcomer and Sara Friedman for their comments on the drafts.We are grateful to the research assistants for their support in during data collection.This study was supported by a Grant to the Global Health Council from the Catholic Medical Mission Board
Copyright © 2007 - Makerere Medical School, Uganda
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