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Recognizing and Responding to HIV-Related Stigma. Tim Vincent, MFT California STD/HIV Prevention Training Center. Goals. To offer recommendations on how to address stigma in training engagements To define and describe stigma, and HIV-related stigma
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Recognizing and Responding to HIV-Related Stigma Tim Vincent, MFT California STD/HIV Prevention Training Center
Goals • To offer recommendations on how to address stigma in training engagements • To define and describe stigma, and HIV-related stigma • To offer recommendations on how to assess HIV-related stigma with patients • To present strategies to respond to stigma on institutional and community levels in order to improve service delivery
Then and Now • HIV-related stigma is not as prevalent now as it was 20 years ago. • Agree • Disagree
How Has Stigma Changed • Research on prevailing attitudes • Acute to chronic model • Depends on the population group and other layers of stigma operating • Focus was not on the recipients of the stigma
How important is it to you to focus on addressing stigma? • 4-Extremely • 3-Significant • 2-Somewhat • 1-Not at all relevant
Recommendations For Faculty: • Instruction in the manifestations of stigma • Instruction in how to assess impact of stigma on patient care and quality of life • Instruction to increase provider awareness of their own bias and the potential to stigmatize patients
Defining Stigma • A powerful discrediting social label that radically changes the way an individual views themselves and are viewed as persons. • People who are stigmatized are usually considered deviant or shameful, and as a result are shunned, discredited, rejected or penalized.
Stigma Can Happen Due To: • Who someone is (Identity) • What he or she has done (Behavior) • Something that may not be accurate or current (Perception)
Someone Can Be Stigmatized As A Result Of: • Racism • Homophobia • HIV Status • Drug Use • Social and Economic Status • Cultural Stereotypes • Sexual Orientation • Mental Health Diagnosis • Gender Identity • Immigration Status • Age • Disability
Different Levels Of Impact • Intrapersonal • Interpersonal • Institutional • Community/Cultural
HIV Stigma can intensify if someone has a disease or condition which is: • life-threatening • contagious • associated with behavior • associated with moral fault • visible
Impact Of Stigma On Patients • Overall quality of life • Ability to access services • Ability to communicate effectively with provider • Ability to succeed with treatment • Ability to make choices about potential risks
Responding To Hiv-related Stigma • People develop or use coping strategies that can be effective or dysfunctional • The coping mechanism may work to alleviate the stress of the stigma. It may or may not create other problems.
Stigma as a lens to: • assess • understand • diagnose • respond to presenting problems
When Assessing the Impact of Stigma • Establish rapport • Consider whether stigma may impact behavior • Decide if it is okay just to ask • Ask if things were different historically • Ask about coping strategies
Care and Treatment Concerns • How do you feel your status affects your ability to get good care services? • How do you feel you have been treated at this clinic? • Do you feel comfortable getting your medications at the pharmacy? • Do you feel the need to hide your medications? How do you manage this?
The Potential Impact On Behavior • In what ways might your behavior change if you sense that you will be judged for having HIV? • Many people feel that they are treated differently as a result of having HIV, what has been your experience? • Have you ever used drugs or alcohol to cope with feeling judged or mistreated for having HIV? • What challenges you in having a healthy sexual life?
Questions Generated From Providers • Do you have any problems taking your meds? • Do you have any problems with this clinic? • In general, what works and what doesn’t work for you? • How has your view of yourself changed since your diagnosis? • Is it okay to call you at home and identify myself? • Do you ever feel excluded from activities because of your HIV status? Do you exclude yourself?
Client/Provider Relationship Concerns • The natural development of a relationship may be impaired by a patient’s experience • The ability to be genuine, demonstrate empathy and respect may be challenged by the client’s presentation
Stigma Impacting Your Work “You have to peel thru layers of defense mechanisms to get to the core of their true selves. With rapport and trust built across time, they do open up eventually. They open up sooner if they perceive that the provider is genuine, trust worthy and non-judgmental”
Felt and Enacted Stigma • Feltstigmarefers to how someone may anticipate the discrimination and the shameful feelings associated with it. • Enacted stigma is the actual experiences of the discrimination.
Suggestions To Increase Self-awareness • Experiential exercises with a clear purpose • Education in the cyclical dynamics of stigma • Emphasize the impact on patient/provider relationship
Approaches Beyond The Individual Level • Access for the clients in creative ways • Community education • Linkages to agencies that serve clients • Consistency of care providers • HIV advocacy/activism • Not putting HIV out on the spotlight
NAPWA Recommendations • Provide knowledge and education • Provide contact with stigmatized people • Develop coping mechanisms • Legal and regulatory responses • Provide care and treatment • Challenging the social acceptability
Faculty Implications • How does the topic currently get addressed in the trainings? • Is there something that you would like to change or create in the trainings? • What happens when a participant displays a stigmatizing attitude toward a patient?
Then and Now • Stigma is a vital and evolving concern • You are the experts in moving the thought process forward
Closing Quote: Not everything that is faced can be changed, but nothing can be changed until it is faced. James Baldwin
References: • NAPWA Facts At-A –Glance: HIV/AIDS Stigma and Discrimination • How does stigma affect HIV prevention and treatment, CAPS Fact Sheet • Stigma and Discrimination: Definitions and Concepts, Canadian AIDS Society • Internalized Stigma Among People with HIV-AIDS, AIDS and Behavior, Vol. 6, No 4, Dec 2002
Contact Information • Tim Vincent, M.S., MFT (510) 625-6015 tim.vincent@cdph.ca.gov