| Literature DB >> 34687380 |
Cristina Rodriguez-Hart1, Grace Mackson2, Dan Belanger3, Nova West3, Victoria Brock3, Jhané Phanor3, Susan Weigl3, Courtney Ahmed3, Jorge Soler4, Alana Rule5, Francine Cournos5,6, Karen McKinnon5,6, Theo G M Sandfort5.
Abstract
Stigma remains a pervasive barrier to Ending the HIV Epidemic (EHE) in New York City (NYC). As part of an EHE implementation science planning process, we mapped multi-level HIV-related stigma-reduction activities, assessed their evidence base, and characterized barriers and facilitators. We interviewed and surveyed a convenience sample of 27 HIV prevention and/or treatment services organizations in NYC, March-August, 2020, using an embedded mixed-methods design. The greatest facilitators of stigma reduction included integration of health services, hiring staff who represent the community, and trainings. Intersecting stigmas were primarily addressed through the integration of HIV with mental health and substance use services. Barriers were multilevel, with organizational structure and capacity most challenging. A strong base of stigma-reduction activities was utilized by organizations, but intersectional frameworks and formal evaluation of activities' impact on stigma were lacking. Effectiveness-implementation hybrid research designs are needed to evaluate and increase the uptake of effective stigma-reduction approaches in NYC.Entities:
Keywords: HIV; Implementation science; Intersectional stigma; Mixed methods; Stigma
Mesh:
Year: 2021 PMID: 34687380 PMCID: PMC8536897 DOI: 10.1007/s10461-021-03498-0
Source DB: PubMed Journal: AIDS Behav ISSN: 1090-7165
Fig. 1Conceptual model of drivers of stigma reduction and resiliency promotion programming adoption within HIV organizations
Organizational characteristics, internal organizational context, and external context for 27 surveyed organizations providing HIV services in New York City, NY
| Background characteristics | N | % |
|---|---|---|
| Organizational characteristics | 27 | 100.0 |
| Type | ||
| Healthcare organization | 10 | 37.0 |
| Community-based organization that provides healthcare | 9 | 33.3 |
| Community-based organization that does not directly provide healthcarea | 8 | 29.6 |
| Boroughs served by organization | ||
| Manhattan | 20 | 76.9 |
| Bronx | 20 | 76.9 |
| Brooklyn | 17 | 65.4 |
| Queens | 15 | 57.7 |
| Staten Island | 8 | 30.8 |
| Employees | ||
| < 100 | 10 | 37.0 |
| 101–500 | 10 | 37.0 |
| 501 + | 7 | 25.9 |
| Organization proactively hires PWHb | ||
| Yes | 20 | 90.9 |
| No | 2 | 9.1 |
| Total PWH clients in Past 12 monthsc | ||
| < 1000 | 14 | 56.0 |
| 1000 + | 11 | 44.0 |
| Populations served by organization | ||
| Black or Latina cisgender women | 27 | 100.0 |
| Transgender and gender non-binary individuals | 26 | 96.3 |
| Older people ages 50 + | 26 | 92.6 |
| Persons who use substances | 25 | 92.6 |
| Black or Latino gay, bisexual and other men who have sex with men | 25 | 92.6 |
| Persons who engage in transactional sex | 25 | 92.6 |
| Youth and young adults ages 12–29 | 25 | 92.6 |
| Persons who are unstably housed | 24 | 88.9 |
| Persons diagnosed with mental illness | 24 | 88.9 |
| Persons involved with the justice system | 24 | 88.9 |
| Immigrants | 23 | 85.2 |
| Respondent's role in organization | ||
| Director/Administrative leadership | 9 | 33.3 |
| Program staffd | 10 | 37.0 |
| Healthcare providerse | 5 | 18.5 |
| Peer worker | 2 | 7.4 |
| Attorney | 1 | 3.7 |
| Internal organizational context (conceptual framework domain) | ||
| Leadership support for stigma reduction programming (organizational context)c | ||
| 1–3 stars | 8 | 32.0 |
| 4 stars | 12 | 48.0 |
| 5 stars | 5 | 20.0 |
| Shared decision-making with clients to determine stigma programming (organizational context)c | ||
| 1–3 stars | 13 | 52.0 |
| 4 stars | 6 | 24.0 |
| 5 stars | 6 | 24.0 |
| Addressing stigma is a top priority of the organization (staff attitudes)c | ||
| 1–3 stars | 9 | 36.0 |
| 4 stars | 7 | 28.0 |
| 5 stars | 9 | 36.0 |
| Staff aware stigma a major barrier for hiv prevention and treatment (staff awareness)c | ||
| 1–3 stars | 7 | 28.0 |
| 4 stars | 7 | 28.0 |
| 5 stars | 11 | 44.0 |
| Stigma reduction an expected part of staff's routine work (staff norms)f | ||
| 1–3 stars | 8 | 33.3 |
| 4 stars | 4 | 16.7 |
| 5 stars | 12 | 50.0 |
| Staff have expertise on how to reduce stigma (staff self-efficacy)f | ||
| Somewhat, but need more training | 12 | 50.0 |
| No | 7 | 29.2 |
| Yes | 5 | 20.8 |
| External context | ||
| Funders fund their organization to do stigma reduction activitiesc | ||
| No | 9 | 36.0 |
| Yes | 8 | 32.0 |
| Unsure | 8 | 32.0 |
| External laws/policies exist that make stigma reduction programming difficultc | ||
| No | 10 | 40.0 |
| Yes | 2 | 8.0 |
| Unsure | 13 | 52.0 |
PWH people with HIV
aAll organizations that did not provide healthcare had a linkage agreement with an organization that does
bDue to adding this question midway, the N = 22
cDue to missing answers, the N = 25
dProgram staff roles include administrative assistant, case manager, grants manager, QI coordinator and social worker
eHealhcare provider roles include physician assistant, physician, pharmacy specialist and nurses
fDue to missing answers, the N = 24
Services and activities that may reduce stigma and promote resiliency, by effective stigma reduction approach and frequency, carried out by 27 surveyed organizations providing HIV services in New York City, NY, 2017–2019
| Stigma reduction programming by stigma reduction approach | Occurred at least once | Still occurring | ||
|---|---|---|---|---|
| N | % | N | % | |
| Clients lead or co-lead training for staffa | 10 | 47.6 | 6 | 28.6 |
| De-escalation or mental health first aid training for clientsb | 12 | 52.2 | 8 | 34.8 |
| Education to clients on applying to grants or other fundingc | 13 | 59.1 | 7 | 31.8 |
| Social marketing campaigns to reduce stigma specifically for clientsd | 18 | 75.0 | 17 | 70.8 |
| Training for clients on how to carry out advocacy workd | 20 | 83.3 | 15 | 62.5 |
| Opportunities for staff and clients to socializee | 21 | 84.0 | 15 | 60.0 |
| Developing self-efficacy skills for safe disclosure of stigmatized characteristicd | 21 | 87.5 | 19 | 79.2 |
| Community Advisory Board (CAB) that meets at least quarterlyd | 21 | 87.5 | 21 | 87.5 |
| Bringing stigmatized individuals to speak on panels at the organizationc | 20 | 90.9 | 15 | 68.2 |
| Client input into quality improvement planning and implementationd | 22 | 91.7 | 21 | 87.5 |
| Providing information on U = U to clientsd | 22 | 91.7 | 22 | 91.7 |
| Promoting family and loved ones to be part of clients' support networkd | 22 | 91.7 | 22 | 91.7 |
| Health literacy trainingc | 21 | 95.5 | 18 | 81.8 |
| Know-your-rights training or materialsb | 22 | 95.7 | 18 | 78.3 |
| Routine and formal organization- wide input of patients/clients into operations and programming of our organizationb | 22 | 95.7 | 20 | 87.0 |
| Providing clients with education on stigma or human rightsd | 24 | 100.0 | 20 | 83.3 |
| Support groups centered around spiritualityc | 10 | 45.5 | 7 | 31.8 |
| Support groups in languages other than Englishb | 15 | 65.2 | 12 | 52.2 |
| Support groups for people with mental health diagnosisc | 15 | 68.2 | 13 | 59.1 |
| Support groups for youth and young adultsd | 18 | 75.0 | 13 | 54.2 |
| Support groups for people who use substancesd | 19 | 79.2 | 14 | 58.3 |
| Support groups for people who are olderd | 19 | 79.2 | 14 | 58.3 |
| Providing peer navigation for clientsd | 19 | 79.2 | 17 | 70.8 |
| Support groups that are peer-ledf | 16 | 80.0 | 12 | 60.0 |
| Community or safe spaces for clients to interact with one anothere | 20 | 80.0 | 18 | 72.0 |
| Screening mental health with questionnaire (e.g. PHQ, CESD)e | 20 | 80.0 | 20 | 80.0 |
| Support groups for womenc | 18 | 81.8 | 15 | 68.2 |
| Support groups for transgender and gender non-binary populationsb | 19 | 82.6 | 13 | 56.5 |
| Support groups for lesbian, gay, or bisexual (LGB) populationsb | 19 | 82.6 | 15 | 65.2 |
| De-escalation or mental health first aid training for staffd | 20 | 83.3 | 16 | 66.7 |
| Screening for coping skillsd | 21 | 87.5 | 20 | 83.3 |
| Screening for traumae | 22 | 88.0 | 21 | 84.0 |
| Support groupsd | 22 | 91.7 | 20 | 83.3 |
| Development of coping skills among clientsd | 22 | 91.7 | 21 | 87.5 |
| Providing active linkage to mental health servicese | 24 | 96.0 | 23 | 92.0 |
| Creation of report or fact sheet on stigmab | 14 | 60.9 | 8 | 34.8 |
| Social marketing campaigns to reduce stigma in the communityb | 17 | 73.9 | 14 | 60.9 |
| Activity for staff to examine one's own privilege or stigmatizing beliefsb | 18 | 78.3 | 11 | 47.8 |
| Training on unconscious biases for staff/providersd | 21 | 87.5 | 14 | 58.3 |
| Training on mental health for staff/providersd | 21 | 87.5 | 16 | 66.7 |
| Training on substance use for staff/providersd | 22 | 91.7 | 14 | 58.3 |
| Training on U = U for staff/providersd | 22 | 91.7 | 16 | 66.7 |
| Trainings on stigma (e.g. stigma generally, racism, homophobia) for staff/providersd | 23 | 95.8 | 15 | 62.5 |
| Training on key populations (e.g. transgender health) for staff/providerse | 25 | 100.0 | 18 | 72.0 |
| Tuition reimbursement for clientsa | 4 | 19.0 | 3 | 14.3 |
| Providing day cared | 7 | 29.2 | 6 | 25.0 |
| Mystery or secret shopper assessment to assess presence of stigmac | 7 | 31.8 | 6 | 27.3 |
| ESL classes for clientsc | 8 | 36.4 | 6 | 27.3 |
| Assistance with credit scores for clientsf | 8 | 40.0 | 8 | 40.0 |
| Assistance with apartment deposits for clientsa | 9 | 42.9 | 8 | 38.1 |
| Emergency financial help for clientsa | 10 | 47.6 | 8 | 38.1 |
| Forming stigma workgroup or taskforceb | 11 | 47.8 | 8 | 34.8 |
| Income generation/job training for clientsb | 13 | 56.5 | 11 | 47.8 |
| Creating organizational stigma reduction plansc | 13 | 59.1 | 9 | 40.9 |
| Collection of data on stigma from stafff | 12 | 60.0 | 8 | 40.0 |
| Lactation rooms exist in your facilityf | 12 | 60.0 | 12 | 60.0 |
| Mobile health unitc | 14 | 63.6 | 12 | 54.5 |
| Providing or active linkage to hometesting for HIV or STIsb | 15 | 65.2 | 13 | 56.5 |
| Creating reminders in the electronic medical records (EMR) system to offer HIV testinga | 14 | 66.7 | 13 | 61.9 |
| Collection of data on stigma from clientsa | 14 | 67.0 | 8 | 38.1 |
| Providing emergency contraceptionc | 15 | 68.2 | 13 | 59.1 |
| Savings promotion/financial literacy traning for clientsb | 16 | 69.6 | 12 | 52.2 |
| Visibility of a policy that explains consequences of stigma and discrimination towards clients in public waiting areasa | 15 | 71.4 | 13 | 61.9 |
| Assessing that referral organizations are not stigmatizing clients you send thema | 16 | 76.2 | 16 | 76.2 |
| Audio or web-based materials to make clients feel more welcomec | 17 | 77.3 | 17 | 77.3 |
| Routine opt-out HIV testingd | 19 | 79.2 | 18 | 75.0 |
| Changing signs or organizational name to not highlight HIVa | 17 | 81.0 | 16 | 76.2 |
| Raising awareness among staff around anti-stigma policiesc | 18 | 81.8 | 15 | 68.2 |
| Providing or linkage to hormone replacement therapy or gender-affirming surgeryc | 18 | 81.8 | 18 | 81.8 |
| Providing reproductive supplies (e.g. tampons)g | 16 | 84.2 | 15 | 78.9 |
| Written policy in place that explains consequences of stigma and discrimination towards clientsf | 17 | 85.0 | 16 | 80.0 |
| Organizational advocacy to politiciansc | 19 | 86.4 | 15 | 68.2 |
| Integrating trauma-informed care principles and training into organizational functionsc | 19 | 86.4 | 17 | 77.3 |
| Changing the EMR system to be inclusive of a broader array of genders,names and pronounsc | 19 | 86.4 | 19 | 86.4 |
| Co-location (one-stop-shop) of more than 1 service that meets a high need for an affected/stigmtized populationb | 20 | 87.0 | 19 | 82.6 |
| Providing or active linkage to same-day ART provision (iART)d | 21 | 87.5 | 19 | 79.2 |
| Providing or active linkage to telehealth servicesd | 21 | 87.5 | 20 | 83.3 |
| Moving organizational messaging away from fear-based or risk-based languagef | 18 | 90.0 | 17 | 85.0 |
| Promoting people from affected/stigmatized communities into leadership positions within the organizationc | 20 | 90.9 | 19 | 86.4 |
| Environmental scans to make public areas of the organization more welcomingb | 21 | 91.3 | 19 | 82.6 |
| Non-EMR methods to include a broader array of genders, names, and pronounsb | 21 | 91.3 | 20 | 87.0 |
| Providing or active linkage to unused syringes/syringe exchanged | 22 | 91.7 | 19 | 79.2 |
| Brochures, posters or other written materials to make clients from affected/stigmatized communities feel welcomed | 22 | 91.7 | 19 | 79.2 |
| Providing or linkage to substance use treatmentd | 22 | 91.7 | 21 | 87.5 |
| Providing universal precaution supplies for staffd | 22 | 91.7 | 22 | 91.7 |
| Created a formal affiliation or parternship with another organization to meet a high need for a stigmatized populationf | 19 | 95.0 | 16 | 80.0 |
| Creating partnerships with organizations that specialize in the care of key populations (e.g. providers that prescribe hormone therapy or carry out gender affirming care)a | 20 | 95.2 | 18 | 85.7 |
| Assistance with legal documentation (e.g. drivers license, voter registration, social security, birth certificates) for clientsc | 21 | 95.5 | 17 | 77.3 |
| Improvements to or strengthening of client confidentialityc | 21 | 95.5 | 20 | 90.9 |
| Providing or active linkage to testing for HIV, STIs and/or Hepatitisb | 22 | 95.7 | 21 | 91.3 |
| Providing or active linkage to PrEPb | 22 | 95.7 | 21 | 91.3 |
| Providing or active linkage to PEPb | 22 | 95.7 | 21 | 91.3 |
| Providing or active linkage to legal services that can address cases involving discrimination at low or no costd | 23 | 95.8 | 21 | 87.5 |
| Providing or active linkage to medical case management/care coordinationd | 23 | 95.8 | 21 | 87.5 |
| Screening for intimate partner violence and active linkage to resources for IPVd | 23 | 95.8 | 22 | 91.7 |
| Participating in organizational networks that focus on addressing stigmad | 24 | 100.0 | 20 | 83.3 |
| Providing or active linkage to housing that is safe and affirming of clientsd | 24 | 100.0 | 20 | 83.3 |
| Hiring people from affected/stigmatized communitiesd | 24 | 100.0 | 22 | 91.7 |
| Providing or active linkage to food and nutrition servicesb | 23 | 100.0 | 22 | 95.7 |
aDue to missing answers; the N = 21
bDue to missing answers; the N = 23
cDue to missing answers; the N = 22
dDue to missing answers; the N = 24
eDue to missing answers; the N = 25
fDue to missing answers; the N = 20
Summary of thematic findings related to HIV and intersectional stigma reduction programming within 27 interviewed organizations providing HIV services in New York City, NY
| Interview question | Summary of findings |
|---|---|
| Mapping stigma-reduction activities by stigma level | |
| Structural-level | |
| "Tell me about formal organization-wide policies or practices in place to help clients feel welcomed?" "Tell me about ways that the physical set-up of the space might give clients the message that they are welcomed and respected?" | Organizations employ informal and formal practices centered around creating a welcoming and informative space, employing staff members that are a reflection of the communities served, and providing a mixture of individual services, like linkage to care and case management, and group services, including support groups and educational programing |
| Interpersonal-level | |
| "What kinds of common understandings do staff have among themselves about how to treat clients?" "Can you describe a situation between a staff person and a client where the staff person could have behaved better or responded better to the client? [After they answer, then ask:] Why do you think this might have happened?" | Organizations commonly utilized a variety of staff trainings to minimize stigma, maintained a culture of respect or client-centered care, and relied on informal mechanisms to remediate enacted stigma without formal or structural processes as part of the solution |
| Individual-level | |
| "What are some ways the organization directly helps clients deal with negative attitudes or feelings they may have about themselves?" | Organizations offer various mental health and behavioral health services, provide space for individual input through structured groups including support groups and community advisory boards (CABs), as well as tackle internalized stigma one-on-one with clients through informal conversations that demonstrate respect and understanding |
| Shared-decision making with clients | |
| "How are clients or other individuals from affected communities that you serve involved in decision making or program planning at the organization?" | CABs and patient satisfaction surveys were the most common way of soliciting client input. A diversity of creative practices to engage client perspectives were believed to improve services, address organizational blindspots, and empower clients to advocate for themselves and each other. Some of these included client-led groups, staff affinity groups, clients on boards or quality assurance committees, staff attendance at CAB meetings, and client/peer input to design programs or materials |
| Assessing the evidence base underlying activities | |
| Assessing stigma within agency | |
| "A few years ago the AIDS Institute (AI) asked HIV organizations they fund to survey their staff and clients in regards to stigma. Did your organization participate in that, and if so, what did that entail? Was anything implemented as a result of the survey results?" | Most healthcare organizations participated in the NYSDOH – AI stigma reduction initiative to measure and respond to HIV stigma and stigma affecting key populations, implementing interventions at the structural, individual, and interpersonal level in response to the survey, with the primary interventions focused on anti-stigma campaigns and trainings. The initiative was not implemented with community-based organizations |
| Most effective strategies | |
| "You’ve described a number of different things to reduce stigma and promote resiliency in your organization. You mentioned [LIST STRATEGIES MENTIONED ABOVE]. Which do you think are one or two of the most effective for reducing stigma and why?" | The most common effective strategies for combating stigma across organizations include: having policies/programs in place that integrate HIV care with other services, staff that are well-trained/educated, outreach and education for clients, and staff that are representative of the communities served |
| Characterizing barriers and facilitators and identifying gaps | |
| Facilitators | |
| "What could strengthen what the organization is already doing to reduce stigma?" | Some of the things they could do to strengthen their efforts to further circumvent stigma included: reinforce training/education of staff on diverse topics, directly addressing stigma (in surveys, programs and workshops), and having methods for evaluating data and feedback |
| Barriers and gaps | |
| "We understand that your organization utilizes [LIST STRATEGIES MENTIONED ABOVE] to reduce stigma, however, could you describe for me any barriers or challenges your organization faces to making clients feel welcome or respected? Is there anything else you think the organization could do to reduce stigma for clients that it is currently not doing?" | The biggest barriers and gaps were associated with the inner context of organizational structure and capacity: large patient volumes, overworked staff with resulting high turnover, bureaucratic and corporate systems, leadership disconnected from client-level experiences, and a lack of evaluation activity to measure stigma reduction were the most pressing concerns. The primary external context barrier was insufficient funding. Barriers at the level of staff and clients were infrequently reported |
| Missing clients | |
| "Who are the clients who might be uncomfortable seeking services from your organization and why? What do you think could be done to make them more comfortable?" | Among the most frequently mentioned clients they felt were missing from their organization were transgender individuals, individuals who worried about being seen receiving services at an HIV organization, and immigrants who were undocumented or did not speak English |
| Intersectional stigma | |
| "People can face challenges or stigma due to multiple issues in their life, and these disadvantages can build on each other. For example, maybe someone faces discrimination because they are living with HIV and with a mental illness or they’re gay and a person of color. They face unique challenges as a result of the combination of the two. If at all, in what ways has your organization thought about or directly addressed the challenges clients have with experiencing multiple types of discrimination?" | Approaches to address intersectional stigmas were largely single-axis. The most common strategy was integration of services, primarily in reference to mental health care and substance use service integration with HIV care. Case management to assure access to all needed services and trainings on different kinds of stigma or "identity" groups were also reported |
[] = instructions that were given to the interviewer and not to be said aloud to interviewee
NYSDOH – AI New York State Department of Health AIDS Institute