Evidence from Six Countries Creating Stigma-Free Health Facilities: Lack of HIV Care Policies, Protocols, Materials Exacerbate Health Worker Fear of HIV Transmission and Stigmatizing Avoidance Behaviors: Evidence from Six Countries July 21st, 2014 Laura Nyblade, Aparna Jain, Manal Benkirane, Li Li, Anna-Leena Lohiniva, Roger McLean, Janet M. Turan, Nelson Varas-Díaz

Collaborative implementation and funding effort Overall Coordination Health Policy Project USAID; AID-OAA-A-10-00067 (includes PEPFAR) China UCLA NIMH; R01MH081778-04S1 Dominica University of the West Indies & HPP Egypt U.S. Naval Medical Research Unit Ford Foundation Kenya University of Alabama at Birmingham, KEMRI & HPP Puerto Rico University of Puerto Rico NIMH; 1R01MH080694 St. Christopher & Nevis the paper presents the results of a 2.5 year collaborative/collective  effort that wouldn’t have been possible without a truly joint effort of many people, institutions, funders etc etc.—and flash it up

Why Stigma & Health Systems? Stigma is directly related to three of the WHO health system building blocks Service delivery: quality; demand for care; access; uptake and retention; equity Health workforce: norms; standards; retention Leadership and governance: policies; procedures; oversight and regulation Health system factors can cause stigma Perceived lack of confidentiality and poor attitude of health personnel was a barrier to HIV testing (Musheke et al, 2013) Health system factors can moderate stigma & its negative influence on key health outcomes Compassionate providers, supportive clinical environment for patients, clinical programs designed to address care for the entire family mitigated the effect of stigma on ART adherence (Katz et al., 2013) For example, key elements of the service delivery building block that are affected by or affect stigma include: quality, demand for care; access; uptake and retention; equity while Leadership and governance: especially at the facility level is key to creating an environment—through policies, procedures, supplies-that support staff to provide stigma-free services.

Stigma within health facilities Forms of stigma Avoidance behaviors (e.g. double gloves, selective use of gloves) Enacted stigma (denial of services, lower quality of care, breaches of confidentiality, verbal abuse & gossip) Secondary stigma experienced by health facility staff Key drivers of stigma within facilities Lack of awareness of what stigma is and what it does Attitudes Worry about HIV transmission Health facility environment Much of stigma is unintentional, something we do not realize we are doing.

Data, Key Questions & Methods The data I will present here focus on just one small aspect of stigma and health systems, in particular health systems and one of the key drivers of stigma in health facilities---worry about HIV transmission on the job.

Background HPP-led consortium of international stakeholders developed, field-tested, and refined a brief measurement tool Field-tested in six sites China, Dominica, Egypt, Kenya, Puerto Rico, St. Christopher & Nevis Self and interviewer administered Range of facilities, varied by site Both clinical and non-clinical staff N ranged from 300–350 per site Total sample size: 1,893 (72% female) Literature review using PubMed, other databases Review included published and grey literature, and pre-publication questionnaires Questions were drawn from ten peer-reviewed articles, three agency reports, and two unpublished questionnaires Content-development workshop 22 international stigma measurement and programmatic experts participated Experts reviewed, assessed, and prioritized a comprehensive list of stigma items Items were selected based on seven criteria Questionnaire: background section, stigma drivers, enacted stigma, a module on stigma toward pregnant women living with HIV

Key questions Q.1: What is the relationship between facility environment and worry about HIV infection on the job Dependent variable: Worry about acquiring HIV in job functions Predictor: Health facility environment Q.2: What is the relationship between worry about HIV infection on the job and self-reporting stigmatizing avoidance behaviors Dependent variable: Stigmatizing avoidance behaviors Predictor: Worry about acquiring HIV in job functions Multivariate logistic regressions adjusted for background characteristics Models adjusted for staff type, age, education, sex and country

Results

Health facility environment variables (n=1,800) Do you have access to post-exposure, prophylactic medications in your health facility? Do you strongly agree, agree, disagree, or strongly disagree with the following statements? There are adequate supplies (e.g., gloves) in my health facility that reduce my risk of becoming infected with HIV. There are standardized procedures/protocols in my health facility that reduce my risk of becoming infected with HIV.

Composite indicator of health facility environment items (n=1,800)

Stigmatizing avoidance behavior variables Avoid physical contact ☐ Yes ☐ No ☐ Not applicable Wear gloves during all aspects of the patient’s care (history-taking, physical examination, etc.) Wear double gloves Use any special measures with patients living with HIV that you do not use with other patients

Worry about acquiring HIV in job functions: Items with potential risk of HIV transmission How worried would you be of getting HIV if you did the following? If any of the following is not one of your job responsibilities, please select “Not applicable.” Took the temperature of a patient living with HIV ☐ Not worried ☐ A little worried ☐ Worried ☐ Very worried ☐ Not applicable

Multivariate logistic regression: Health facility environment on worry Predictor Model 1 (n=814)1 OR (CI) Support on none or one item 1.00 Support on two items 0. 73 (0.43, 1.25) Support on all items 0.53 (0.31,0.90)* In this analysis we explore the relationship between the health facility environment and fear, as measured by the composite variables we just looked at. Model 1 looks at the relationship between health facility environment and worry about transmission in job functions that have potential risk, while model 2 looks at the relationship between health facility environment and worry about transmission in actions that carry no risk. Focusing on the bolded numbers in the bottom row, we see that respondents who report support on all items report have a roughly 50% lower odds of worry on either variable compared to those who report support on none or one item, significant at a p-value of less than .05. *p-value < 0.05 1 Worry items with potential risk of HIV transmission 2 Worry items with no risk of HIV transmission Models adjusted for staff type, age, education , sex and country

Multivariate logistic regression: Worry on avoidance behaviors Model 1 (n=659) 1 Predictor OR (CI) Not worried 1.00 Worried 1.88 (1.30, 2.73)** Now turning to our second analysis---we examine the relationship between worry and stigmatizing avoidance behaviors. In model 1, respondents who report worry about transmission in actions that carry potential risk have odds of reporting avoidance behaviors that are 1.88 times higher than those who report no fear. While respondents who report worry in actions that carry no risk of HIV transmission have odds of reporting stigmatizing avoidance behaviors that are 3.18 times higher than respondents who report no worry. *p-value < 0.05 ** p-value < 0.001 1 Worry items with potential risk of HIV transmission 2 Worry items with no risk of HIV transmission Models adjusted for staff type, age, education, sex and country

Conclusions

Stigma matters to health systems Health system factors can drive or moderate stigma Health facility environment can influence staff worry about HIV transmission Worry in turn is related to stigmatizing avoidance behaviors that can lead to HIV status disclosure Stigma can undermine health systems & health outcomes Quality of care, access, equity Uptake of HIV testing, linkage to ART care, adherence This study has examined just one small corner of the issue of stigma and health systems—demonstrating that there is a relationship between health facility environment (in terms of staff perceptions of their safety/ability to protect themselves from HIV at work) and worry about HIV transmission—which is a demonstrated driver of stigmatizing behavior in (and outside) health facilities—as illustrated by this data --where worry is related to self-reporting use of stigmatizing avoidance behaviors that risk visibly marking a patient living with HIV, thereby disclosing their status to all around them. The experience, or fear of experiencing, stigma in health facilities (including fear of disclosure of status) undermines health systems by lowering quality of care, which in turn limits access and reduces demand for services, undermines equity, particularly for groups who experience multiple stigmas, for example stigma towards key populations, which is often layered on top of HIV stigma—and ultimately undermines health. On the other hand, health systems can be a positive force in moderating or combating stigma that clients fear or are experiencing outside the health system. For example, as Katz and Musheke—referenced earlier show—by the way in which services are organized (to minimize risk of disclosure), or by providing quality services, in particular a welcoming & supportive environment---

Action is possible Make stigma an explicit component of quality by: Including stigma indicators in quality assessments Integrating stigma-reduction into quality-improvement processes Incorporate stigma-reduction into: Training—pre and in-service (for all staff) Licensing and accreditation for individuals & facilities Performance assessment & supervision Ensure guidelines, standards, policies support provision of stigma-free services & non-discriminatory care Stigma-reduction tools and measures for health facilities exist Participatory stigma-reduction training materials Administrators guide Standardized measures & approved indicators