The NAPWHA HIV Health Literacy Framework (HLF) project was a three-year initiative (2019-2021) aimed to address the role of HIV health literacy in improving HIV-related health care and quality of life outcomes for all people living with HIV (PLHIV) in Australia. Through this initiative, NAPWHA engaged diverse and underrepresented and/or underserved communities in the co-design, delivery and evaluation of targeted pilot strategies and approaches tailored to their needs and based on action research findings. As a community-based organisation, NAPWHA continued to share the project learnings with other PLHIV partners. This objective was to ensure the emerging health literacy and community engagement framework and related co-design learnings could be applied to other HIV prevention and treatment campaigns thus, maximising impact across the diversity of all PLHIV in Australia.
Read our report summarising the project’s outcomes
For World AIDS Day 2021, The National Association of People with HIV Australia (NAPWHA) and ViiV healthcare Australia held a livestream event ‘Quality of life for people with HIV: Rediscovering What Matters’ with a panel including Brent Allan (QThink Consulting; icaso), Sarah Feagan (NAPWHA; Living Positive Victoria), Prof. Jenny Hoy (Alfred Health Victoria) and host Jennie Brockie.
If you are living with HIV and you are pregnant or thinking about becoming pregnant, you may be thinking about breastfeeding your baby, and whether it is safe or advisable.
The information in this community resource is provided for women who are living with HIV and want to understand the issues around breastfeeding or formula feeding.
This initiative was also developed and produced under the NAPWHA HIV Health Literacy Framework (HLF) project — a framework approach which uses community-led participatory action research, led by HIV community advocates with networks of HIV peers, to inform health promotion. This resource was produced in shared collaboration between NAPWHA and Positive Women Victoria. This resource is an initiative that also forms part of Living Well: Women with HIV – an on-going website collaboration between NAPWHA and AFAO since 2016. The community resource was launched in September 2021.
The community resource is also to be used in conjunction with the clinical guidance resource produced by ASHM (Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine) —The Optimal Scenario & Context of Care: ASHM Guidance for Healthcare Providers regarding Infant Feeding Options for People Living with HIV with highlights from Breastfeeding and Women Living with HIV in Australia (2021).
In 2021, The National Association of People with HIV Australia (NAPWHA) engaged QThink Consulting to investigate how well it involves people living with HIV (PLHIV) in its work. To do this, QThink constructed the Assessing NAPWHA’s Engagement with PLHIV Survey. The survey was informed by Greater Involvement of People Living with HIV/AIDS (GIPA), Meaningful Involvement of PLHIV and Affected Communities (MIPA) and Meaningful Involvement of Women and Girls Living with HIV (MIWA) principles, best practice guidelines sourced from a variety of NGOs, peak bodies and advocacy organisations, as well as input from NAPWHA. Also see: AIDS2022 Poster on MIPA Agency-engagement with PLHIV [PDF].
A NAPWHA workshop was held in Sydney on 2 May 2019 attended by NAPWHA jurisdictional and member organisations, as well as by researchers who worked closely with HIV-positive people and communities. Having the theme of Research and representation: Meaningful involvement of PLHIV in research activities, the group had by and large been selected or self-selected because of their interest and involvement in HIV-related research programs. This report summarises the convening of this workshop held at a moment of change within the call for an updated approach to engagement of PLHIV in HIV-related research.