David Menadue, (NAPWA), describes the networks of different constituencies of people living with HIV which inform and suport NAPWA's work.
This presentation was given at the AFAO Positive Services Forum 2012.
2. NAPWA
• Has always been peer-focussed and peer-led
• Aims to involve many plhiv in the work of the
organisation, whether as a state representative,
contributor to policy discussions, or as an individual
in their own right
• Has developed networks to promote diversity and
inclusion
• Despite best efforts, is not able to engage some
groups of plhiv (eg younger people)
3. Groups most likely to engage
• The NAPWA Stigma Survey (online survey of 697 plhiv on attitudes
to stigma and discrimination) found:
• People most likely to engage with HIV community orgs were—
• in “other” relationships (compared with single)
• Those with noticeable HIV-related symptoms
• Those who worked part-time and pensioners
• infected through injecting drug use (had the most involvement)
• There was a positive correlation with engagement and--
• resilience, self-esteem, health satisfaction, quality of life, social
support and HIV as an important aspect of one’s life
4. Least likely to engage
• Single people
• Students
• Youth
• HIV community engagement was negatively correlated
with:
• Negative experiences around HIV, perceived stigma
• around HIV treatments, depression, anxiety, stress, year
of diagnosis and social and emotional aspects of living
with HIV
5. The National Network of Women living with HIV
• The only national network for HIV+ women
• Meets by teleconference several times a year
• Has regular email loops, quarterly newsletter, page on NAPWA
Facebook page on web
• Seeks to ensure women’s involvement in all aspects of the
organisation’s work including at Board level
• Particular interest in sexual and reproductive health, working
on a statement on “HIV and Pregnancy”, promoted female
condoms as a part of their World AIDS Day campaign last year.
6. PATSIN
• Positive Aboriginal and Torres Strait Islander Network
• Seeks to bring together HIV+ ATSI from around
Australia and to influence policy and understanding
of HIV+ ATSI issues in the sector
• Meets once a year face to face
• Has changeable membership numbers- although
recent increase of 6 new members suggests new
energy for the network to achieve its goals
7. Treatment Officers Network (TON)
• Ensures Treatment Officers in AIDS Councils, plhiv
orgs are up to date on the latest on treatments
• Meets several times a year
• Includes ASHM Short Course training
• Issues addressed in training have included:
comorbidities, HIV and the brain, living longer with
HIV, stigma and discrimination
• Members contribute to a column in Positive Living
magazine
8. AFAO NAPWA Education Team
• Joint AFAO and NAPWA team to produce materials, print and
web, on HIV prevention and health promotion
• Initially NAPWA had an Education Network which consisted
largely of volunteers, with few paid staff in plhiv organisations
then, few achievements because of lack of resources provided to
NAPWA for education.
• Funding of plhiv organisations in 4 states for health promotion for
plhiv has meant these staff members now contribute to ANET
meetings and work groups
• NAPWA Networks important to spread work about ANET
projects, materials eg. Stigma Audit
9. The Stigma Audit
• Stigma Audit was a good example of involving plhiv in a
research project and building skills
• Eight HIV+ interviewers from around the country did
interviews of plhiv experiences of stigma and discrimination
• Audit was promoted through NAPWA networks, Facebook
page, posters at GP clinics etc
• 697 respondents (662 men- 611 gay), 32 female, 3
transgender)
• Interviewers received training in interviewing skills and
developing their research reports.
10. Limitations to our engagement
• Geographic barriers, cost of travel for face-to-face meetings
• State and territory plhiv organisations have most face-to-face
contact with plhiv although NAPWA highly regarded as
national spokesbody, and a source of policy and advocacy
expertise, particularly by smaller states/territories
• Have little engagement from younger plhiv or people from
CALD backgrounds
• Activism which came with HIV in the eighties/nineties–
fervour has died with better health outcomes although some
members still engaged from that time!