Stigma is a well-documented barrier to health seeking behavior, engagement in care and adherence to treatment across a range of health conditions globally. In order to halt the stigmatization process and mitigate the harmful consequences of health-related stigma (i.e. stigma associated with health conditions), it is critical to have an explicit theoretical framework to guide intervention development, measurement, research, and policy. Existing stigma frameworks typically focus on one health condition in isolation and often concentrate on the psychological pathways occurring among individuals. This tendency has encouraged a siloed approach to research on health-related stigmas, focusing on individuals, impeding both comparisons across stigmatized conditions and research on innovations to reduce health-related stigma and improve health outcomes. We propose the Health Stigma and Discrimination Framework, which is a global, crosscutting framework based on theory, research, and practice, and demonstrate its application to a range of health conditions, including leprosy, epilepsy, mental health, cancer, HIV, and obesity/overweight. We also discuss how stigma related to race, gender, sexual orientation, class, and occupation intersects with health-related stigmas, and examine how the framework can be used to enhance research, programming, and policy efforts. Research and interventions inspired by a common framework will enable the field to identify similarities and differences in stigma processes across diseases and will amplify our collective ability to respond effectively and at-scale to a major driver of poor health outcomes globally.
IntroductionHIV-related stigma and discrimination continue to hamper efforts to prevent new infections and engage people in HIV treatment, care and support programmes. The identification of effective interventions to reduce stigma and discrimination that can be integrated into national responses is crucial to the success of the global AIDS response.MethodsWe conducted a systematic review of studies and reports that assessed the effectiveness of interventions to reduce HIV stigma and discrimination between 1 January 2002 and 1 March 2013. Databases searched for peer-reviewed articles included PubMed, Scopus, EBSCO Host –CINAHL Plus, Psycinfo, Ovid, Sociofile and Popline. Reports were obtained from the www.HIVAIDSClearinghouse.eu, USAID Development Experience Clearinghouse, UNESCO HIV and AIDS Education Clearinghouse, Google, WHO and UNAIDS. Ancestry searches for articles included in the systematic review were also conducted. Studies of any design that sought to reduce stigma as a primary or secondary objective and included pre- and post-intervention measures of stigma were included.ResultsOf 2368 peer-reviewed articles and reports identified, 48 were included in our review representing 14 different target populations in 28 countries. The majority of interventions utilized two or more strategies to reduce stigma and discrimination, and ten included structural or biomedical components. However, most interventions targeted a single socio-ecological level and a single domain of stigma. Outcome measures lacked uniformity and validity, making both interpretation and comparison of study results difficult. While the majority of studies were effective at reducing the aspects of stigma they measured, none assessed the influence of stigma or discrimination reduction on HIV-related health outcomes.ConclusionsOur review revealed considerable progress in the stigma-reduction field. However, critical challenges and gaps remain which are impeding the identification of effective stigma-reduction strategies that can be implemented by national governments on a larger scale. The development, validation, and consistent use of globally relevant scales of stigma and discrimination are a critical next step for advancing the field of research in this area. Studies comparing the effectiveness of different stigma-reduction strategies and studies assessing the influence of stigma reduction on key behavioural and biomedical outcomes are also needed to maximize biomedical prevention efforts.
The purpose of this review paper is to provide information and guidance to those in the health care setting about why it is important to combat HIV-related stigma and how to successfully address its causes and consequences within health facilities. Research shows that stigma and discrimination in the health care setting and elsewhere contributes to keeping people, including health workers, from accessing HIV prevention, care and treatment services and adopting key preventive behaviours.Studies from different parts of the world reveal that there are three main immediately actionable causes of HIV-related stigma in health facilities: lack of awareness among health workers of what stigma looks like and why it is damaging; fear of casual contact stemming from incomplete knowledge about HIV transmission; and the association of HIV with improper or immoral behaviour.To combat stigma in health facilities, interventions must focus on the individual, environmental and policy levels. The paper argues that reducing stigma by working at all three levels is feasible and will likely result in long-lasting benefits for both health workers and HIV-positive patients. The existence of tested stigma-reduction tools and approaches has moved the field forward. What is needed now is the political will and resources to support and scale up stigma-reduction activities throughout health care settings globally.
We examined trends and predictors of quality of life (QOL) over 12 months among a prospective cohort of 947 HIV-1-infected adults initiating highly active antiretroviral therapy (HAART) between May 2003 and May 2004 in rural Uganda. Participants provided clinical, demographic and psychosocial data at baseline and every three months thereafter. Outcome measures included physical and mental health summary scores based on the Medical Outcomes Study-HIV Health Survey (MOS-HIV). Generalised estimating equations were used to assess magnitude of change in summary scores and factors associated with QOL. Of 710 women and 237 men enrolled, the mean age was 38.7 years and mean baseline CD4 cell count was 124.1 cells/microL. At enrollment, physical and mental health summary scores were 39.2 and 40, respectively. By 12 months of HAART, scores increased by 11.2 points (p <0.001) and 7.4 points (p <0.001), respectively. For both scores, most gains were achieved by the third month of therapy. While several clinical, psychosocial and sociodemographic factors predicted QOL at HAART initiation, financial dependence on others was the only remaining predictor after controlling for time on HAART. Interventions to enhance the economic and employment opportunities of patients taking HAART in rural Africa may help maximise gains in QOL.
There is no question that the stigma and discrimination associated with HIV and AIDS can be reduced through intervention. The inclusion of stigma and discrimination reduction as a critical component of achieving an AIDS-free generation in recent UNAIDS, UN and PEPFAR political initiatives is promising. Yet national governments need evidence on effective interventions at the individual, community and societal levels in order to strategically incorporate stigma and discrimination reduction into national AIDS plans. Currently, the heterogeneity of stigma and discrimination reduction approaches and measurement makes it challenging to compare and contrast evaluated interventions. Moving forward, it is critical for the research community to: (1) clearly link intervention activities to the domains of stigma to be shifted; (2) assess the stigma domains in a consistent manner; and (3) link stigma and discrimination reduction with HIV prevention, care and treatment outcomes (e.g., uptake, adherence and retention of ART). These steps would further advance the scientific evidence base of stigma and discrimination reduction and allow for the identification of effective interventions that could be scaled up by national governments.
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