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

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This presentation was given by Shaun Staunton, University of Queensland School of Medicine, at the AFAO HIV Educators Conference, May 2010.

This presentation was given by Shaun Staunton, University of Queensland School of Medicine, at the AFAO HIV Educators Conference, May 2010.

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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 Presentation Transcript

  • 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 Projects
    • Our Vision
    • To be committed to the continuum of clinical education for
    • Clinicians, offering comprehensive, evidence based and
    • up to date training in the areas of HIV, Viral Hepatitis and
    • Sexual Health at a state, national and international level.
    • Three core training areas; Sexual Health, Hepatitis C, HIV
    • Training utilises a constructivist model – building on prior
    • knowledge via the application of new knowledge in
    • practical 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 with
    • HIV and/or chronic viral hepatitis to educate the wider
    • community about the realities of living with HIV and/or
    • chronic viral hepatitis. By doing so, the QPSB also aims
    • to break down barriers and reduce stigma and
    • discrimination 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 -
    • Hypothesis
    • When individuals experience stressful events, such as
    • PLWHA, 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
    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
  • 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
    • 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_address]
    • 07 3365 5026