Table 3.
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