Understanding & Addressing Multiple Dimensions of Stigma to Promote Engagement in Care
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1 Understanding & Addressing Multiple Dimensions of Stigma to Promote Engagement in Care Serena Rajabiun, Senior Evaluator, Boston University School of Public Health, Boston, MA Manisha Maskay, Chief Program Officer, AIDS Arms Inc., Dallas, TX Lisa McKeithan, SPNS Program Manager, CommWell Health, Newton Grove, NC 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
2 Disclosures Serena Rajabiun, Boston University School of Public Health, Boston, MA Manisha Maskay, AIDS Arms Inc., Dallas, TX Lisa McKeithan, CommWell Health, Newton Grove, NC Presenter(s) have no financial interest to disclose. This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with HSRA and LRG. PESG, HSRA, LRG and all accrediting organization do not support or endorse any product or service mentioned in this activity. PESG, HRSA, and LRG staff has no financial interest to disclose NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
3 Obtaining CME/CE Credit If you would like to receive continuing education credit for this activity, please visit: Peer Linkage and Re-engagement For Women of Color NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
4 Learning Objectives At the conclusion of this activity, the participant will be able to: Identify the various dimensions of stigma Describe strategies to measure stigma Create strategies that can be used to address stigma at the individual, community and systems level in order to promote linkage and engagement in HIV care 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
5 Acknowledgements: Emily Sisson & Alex De Groot, Boston University School of Public Health Jessica Davila, Harris Health System, Houston, TX Christa Black & Jodi Davich, Multnomah County Health Department, Portland, OR Ruthanne Marcus, Associate Director, Clinical and Community Research AIDS Program Yale University, New Haven, CT This presentation was made possible by cooperative agreement number U90HA24974 from the U. S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), HIV/AIDS Bureau's Special Projects of National Significance Program. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the government.
6 HRSA SPNS Initiative: Building a Medical Home for HIV Homeless Populations Goal: To engage homeless/unstably housed persons living with HIV who have mental illness and/or substance use disorders in HIV and behavioral health care and obtain stable housing
7 Priority Population 1. Persons living with HIV/AIDS who are 18 years of age or older 2. Persons who are homeless or unstably housed Literally homeless Lacks a fixed, regular, and adequate nighttime residence Unstably housed No lease, ownership interest or occupancy agreement in permanent and stable housing in the last 60 days; or Persistent housing instability as measured by two moves or more in the preceding 60 days; and Expected to continue as such for an extended period of time. Fleeing domestic violence Fleeing or attempting to flee domestic violence, has no other residence and lacks the resources to obtain permanent housing. 3. Persons with one or more co-occurring mental health or substance use disorders
8 Stigma Defined Stigma is an attribute that is deeply discrediting and results in the reduction of a person or group from a whole and usual person to a tainted, discounted one. Goffman elements of labeling, stereotyping, separation, status loss, and discrimination occur together in a power situation that allows them. Link, BG. and Phelan, JC. Conceptualizing Stigma. Ann Rev Socio Stigma may be related to: HIV Substance use disorders Mental illness Housing status Immigration status Incarceration history Gender identification Race or Ethnicity Sexual orientation Other? Significant intersection exists between types of stigma and the causes
9 Impact Internalized Negative self-esteem Depression/Anxiety Fear Stress Social isolation Perceived enacted/experience (perceptions of other s opinions) Discrimination Delay in care-seeking Poor health outcomes
10 Stigma & HIV Care
11 Goals of the stigma study Understand and describe how stigma is manifested in individual s experience Develop approaches and coping skills for clients who experience stigma Create a medical home to reduce stigma and enhance access and quality of care
12 Approach Longitudinal study (0, 6, 12, 18 months) Stigma on 4 dimensions: 16 items HIV (Berger scale) Perceived external stigma Provider-related stigma Housing status/homeless (adapted from BRFSS) Mental illness Substance use disorders
13 Findings from baseline survey (n=546) 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
14 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
15 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
16 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
17 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
18 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
19 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
20 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
21 Charting Stigma 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
22 Community approaches to addressing Stigma Discussion 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
23 Stigma Site: CommWell Health Presenter: Lisa McKeithan
24 Geographic location Rural, southeast North Carolina
25 CASE EXAMPLE Participant A 54 years old African American male MSM Unstably housed Medical HIV positive with a long history of non-adherent medication use History of Cancer Depression Cocaine dependence
26 Client Concerns Stigma 1. Providers Poor treatment by healthcare providers Reluctant to attend appointments Medication compliance 2. Family Shunned by family, peers Hiding his medication Disclosure 3. Community Handshakes Mistreatment
27 Network Navigators Enroll the participant in CommWell Health s inpatient substance abuse rehabilitation program for 45 days Advocate on participant s behalf Make referrals for BH, dental, SA Provide transportation to all medical and social services appointments Housing Participant is living in an apartment and gainfully employed. He hopes to start a non profit organization to help other individuals with HIV.
28 SPNS/NC REACH CommWell Health Waiting Rooms MH Provider Dental Hygienist Nutritionist Patient Centered Medical Home Consumer Advisory Board Staff Code of Behavior/Conduct/Ethics Cultural Sensitivity Trainings Webinars CAPUS C3 Trainings
29 Outreach in Community Festivals Health Fairs Faith Based Community Local Business 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
30 AIDS Arms The AIDS Arms Health, Hope and Recovery Program addresses stigma by: Assessing whether and how clients are experiencing stigma Helping clients address internal and external stigma through Motivational Interviewing and Strengths Based Counseling approaches Providing advocacy on behalf of clients Collaborating with and educating internal and external partners on an ongoing basis
31 Case Vignette AIDS Arms Client with a history of AIDS related health conditions, substance use disorder and chronic homelessness for > 20 years Did not believe that he would ever have permanent housing or that he deserved housing because of his substance use Further experience of discrimination by housing providers re-affirmed the internal stigma
32 Case Vignette AIDS Arms (contd.) Health, Hope and Recovery Care Coordinator worked with client for 18 months Utilized Motivational Interviewing strategies to help client reframe his experiences and follow up on appointments Provided focused advocacy with housing provider on behalf of the client Educated housing provider regarding Housing First principles Enabled client to receive permanent housing Helping client address internal stigma and reframe his approach promoted stability and decreased acuity level
33 Addressing Stigma through a Socio-Ecological Approach 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
34 Socio-Ecological Framework
35 Individual Help build protective factors Use a positive approach - focus on strengths Use cognitive-behavioral approaches Empower Help build resilience, assertiveness skills Develop support and social network
36 Interpersonal Examine your own attitudes, beliefs Avoid stigmatizing labels Acknowledge concerns Strive to understand Use teachable moments Provide care and support Promote acceptance - give more than lip service
37 Institutions, Community, Society Educate multiple levels including stakeholders, elected officials, community members, healthcare/other providers Leverage teachable moments Share stories Advocate Engage media print, internet, TV, social media; show examples of how stigma is being perpetuated or decreased Leverage stigma reduction resources Promote research Encourage policy development Utilize legal interventions
38 Group Think How would you address stigma? 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
39 Conclusions Stigma: is multifaceted and complex is associated with discrimination comprises of several domains must be understood in order to be addressed effectively interventions must occur at multiple levels in order to achieve elimination Prevention and treatment programs must help people develop strategies to help address and cope with internal and external stigma. Many resources are available
40 Resources
41 Resources
42 Resources
43 Resources NASTAD:
44 Resources Selected Websites (NAMI StigmaBuster) Selected Videos Living in the Shadows Documentary; AIDS 2014, Melbourne Australia; A New State of Mind: Ending the Stigma of Mental Illness, narrated by Glen Close; created by KVIE-TV, Sacramento, CA. Available for viewing at Vimea.com
45 Stigma Elimination An ongoing process with many steps
46 Carter Quote I dream of the day when stigma no longer exists, when services are available to all, and when every individual can look forward to a happy and fulfilling future, is within our reach. -Rosalynn Carter 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
47 Questions???
48 Thank you!
49 Contact information Serena Rajabiun Manisha Maskay Lisa McKeithan 2016 NATIONAL RYAN WHITE CONFERENCE ON HIV CARE & TREATMENT
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