Increased Visibility, Decreased Stigma; Individual and social benefits to becoming a speaker in a HIV positive speakers’ bureau

Increased Visibility, Decreased Stigma; Individual and social

benefits to becoming a speaker in a HIV positive speakers’ bureau

Shaun Staunton

Education & Project Management Specialist

HIV & HCV Education Projects

University of Queensland School of Medicine

University of Queensland School of Medicine

HIV & HCV ProjectsOur Vision

To be committed to the continuum of clinical education forClinicians, offering comprehensive, evidence based andup to date training in the areas of HIV, Viral Hepatitis andSexual Health at a state, national and international level.

Three core training areas; Sexual Health, Hepatitis C, HIV

Training utilises a constructivist model – building on priorknowledge via the application of new knowledge inpractical ways

Core HIV role; Develop and maintain a competent level of knowledge and skills in the treatment and management of HIV among Medical Practitioners working in HIV Medicine in Queensland. Education aims to provide the means for General Practitioners to begin and maintain accreditation to prescribe licensed HIV antiretroviral therapies through the Highly Specialised Drugs Program.

• Revamp of pre-existing Public Speakers Bureau for PLWHA in 2007

• Coordinator employed in 2009

• Saw a more coordinated Bureau created

• Included speakers living with Hepatitis C and Hepatitis B

• Speakers are paid a nominal fee for each engagement

• Speakers attend training before first speaking engagement

• This has proven to be a great service for organisations running HIV and/or Hepatitis awareness education

Queensland Positive Speakers Bureau

Queensland Positive Speakers Bureau

The aim of the QPSB is to empower individuals living withHIV and/or chronic viral hepatitis to educate the widercommunity about the realities of living with HIV and/orchronic viral hepatitis. By doing so, the QPSB also aimsto break down barriers and reduce stigma anddiscrimination about HIV & chronic viral hepatitis.

HIV & HCV Projects utilisation of speakers

• HIV positive speakers are regularly utilised in the introductory HIV education course; “Education Course in HIV Medicine for all Health Care Professionals”

• Similarly for Hepatitis C education courses, with HCV positive speakers

• HIV positive speakers are utilised on an ad hoc basis for other education courses (e.g. HIV and Wellness Course, which focuses on General Practitioners providing a positive result and providing care for newly diagnosed PLWHA)

Benefits of being a speaker- Introduction -

Abel, E., Rew, E., Gortnere, E.-M., Delville, C. (2004) Cognitive reorganization and stigmatization among persons with HIV. Journal of Advanced Nursing. 47(5), 510–525

Hypothesis

• When individuals experience stressful events, such asPLWHA, and are unable to share their thoughts and feelings with others, they are at an increased risk for physical and mental health problems

• Conversely, when individuals disclose upsetting experiences and emotions in language, rather than ruminating about them, their health and behaviour is improved

Original “speaking” model

• “Emotional Writing Disclosure” (EWD)

• PLWHA write about the emotional aspects of having HIV/AIDS (what it means to them, their family, work etc.)

• Perceived baseline benefits of Emotional Writing Disclosure

• Cognitive reorganisation (“seeing things in a “new light”)

• Reduced perceptions of stigmatisation• “Labelling” emotional events and reducing uncertainty

about feelings

Abel, E., Rew, E., Gortnere, E.-M., Delville, C. (2004) Cognitive reorganization and stigmatization among persons with HIV. Journal of Advanced Nursing. 47(5), 510–525

Outcomes for PLWHA who take part• EWD impacts on perceptions of stigmatisation

• Those with a clearly stigmatised identity benefit from EWD more than those without this type of identity. Adjusting the writing task to focus on the type of stigma and membership in the group provides even more benefits (reduced depression)

• EWD enhances psychological wellbeing• EWD reduces depression and anxiety, and increases

self esteem, positive attitudes, and psychological adaption (linked with long-term survival rates and improved coping with HIV/AIDS)

• EWD has physical effects• EWD has been shown to increase CD4 cell counts and

have a range of other positive immune effects

Abel, E., Rew, E., Gortnere, E.-M., Delville, C. (2004) Cognitive reorganization and stigmatization among persons with HIV. Journal of Advanced Nursing. 47(5), 510–525

Abel, E., Rew, E., Gortnere, E.-M., Delville, C. (2004) Cognitive reorganization and stigmatization among persons with HIV. Journal of Advanced Nursing. 47(5), 510–525

Safety for QPSB speakers

• Strategies are implemented to try and create a “safe space” for speakers

• At the beginning of the session the audience is reminded about confidentiality and the importance of respecting speakers

• Speakers attend sessions in pairs and present together

• Speaker training includes self-management issues such as stress management, self reflection exercises, communication strategies, and managing confronting questions

Discussion Points

Some topics and areas regularly covered by QPSB speakers include;

• Reactions from others when disclosing

• Their experience of being diagnosed with HIV

• Life changes from diagnosis

• Behaviours and reasons for behaviours that led them to contract HIV

• How they are treated within their networks as a positive person

• Interactions with health care system

• HIV treatments

• Aspects of living with HIV (physical symptoms, psycho-social issues, treatment adherence)

Additional questions

1) Additional advantage/disadvantage of audience questions versus EWB

2) PLWHA report that the more time since they were diagnosed, the more their experiences of stigma about their status has decreased. Additionally, they report that disclosure has gotten easier over time.

A future area of research in relation to the QPSB is;

• Are the experiences of being a QPSB speaker equivalent to the benefits of time since diagnosis? In other words, do speakers experience decreased stigma (EWD research would suggest they do) and does it become easier for QPSB speakers to disclose?

Abel, E., Rew, E., Gortnere, E.-M., Delville, C. (2004) Cognitive reorganization and stigmatization among persons with HIV. Journal of Advanced Nursing. 47(5), 510–525

QPSB benefits for society

Parkera, R., Aggletonb, P. (2003) HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Social Science & Medicine, 57, 13–24

Reviewing approaches

• This sort of “expert” model is ineffective at achieving large scale change (and possibly small scale change)

• The majority of HIV and AIDS stigma operates at the level of communities

• This necessitates a change in strategy towards community mobilisation and social transformation

“Capitalising on and unleashing the power of resistance on the part of stigmatising populations”

• Speaking positive bureau’s are an emerging element of this change in focus

Parkera, R., Aggletonb, P. (2003) HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Social Science & Medicine, 57, 13–24

Further Information

Shaun Staunton

[email protected]

07 3365 5026