HIV Health Literacy Framework Project
NAPWHA is committed to improving HIV-related health care and quality of life outcomes for all people living with HIV (PLHIV) in Australia. This includes promoting, and assisting all PLHIV to engage actively with, the HIV Care Continuum and have improved quality of life.
NAPWHA has embarked on a three-year initiative (2019-2021) – HIV Health Literacy Framework (HLF) project – that focuses on the role health literacy can play in contributing to these goals. The assumption is that the organisation can do more to improve its HIV-related health messaging to all PLHIV, and that improved HIV health literacy at all levels (individual, community, organisational, sectoral and policy) can be achieved. In addition to strengthening NAPWHA as a more health literate organisation, an outcome for the HLF project is increased HIV health literacy among individuals and communities.
Supporting an improved conversation with women
In addition to strengthening NAPWHA as a more health literate organisation, an outcome for the HLF project is increased HIV health literacy among individuals and communities. Women living with HIV (WLHIV) is a primary focus of this project in its initial phase. Led by Community Advocates, who are recruited and provided professional development through NAPWHA, peer-led community consultations were held with women living with HIV in Melbourne and Darwin in 2019; then in Brisbane and Perth in 2020; and culturally and linguistically diverse women in 2021. A further community consultation was held with women living with HIV who had experiences with breastfeeding, as this was identified as a specific area of health literacy which was an opportunity for improvement.
These consultations form part of the basis of a HIV Health Literacy Framework in 2019 to support an improved conversation with people living with HIV, starting with women. The emerging health literacy framework then went on to implement and evaluate a range of specific health literacy initiatives targeting (or tailored for) women.
The Framework pilot process demonstrated to work within the pilot WLHIV with learnings from the Framework shared within the sector. It was and then was extended to other community groups, including positive heterosexual men; Aboriginal and Torres Strait Islander communities; PLHIV with experiences of incarceration and injecting drug use; and overseas-born culturally and linguistically diverse gay, bisexual and MSM.
A strongly participatory and action research approach underlies the initiative. The objective is that Community Advocates lead conversations to allow for women to share their perspectives on living with HIV, receive the best possible information regarding HIV, and engage in health promoting actions with regards to HIV. At the same time, the processes, outputs and outcomes of the program should be in keeping with best practices for HIV-related health literacy initiatives in general, and thus generalisable.
Development of the ‘health literacy’ concept
In Australia and internationally, there has in recent decades been a strong policy, research and practice interest in health literacy. In July 2019, NAPWHA commissioned researcher consultant Ronald Woods to identify, describe, analyse and synthesize existing literature on health literacy — with a literature review forming an integral part of the HIV health literacy framework project.
‘Health literacy’ has generated a great deal of research, policy and practice interest since it was first debated in the 1970’s. Understood as a measure of the capacities that individuals have to find, process, understand, and communicate about health information and services to protect and promote their health, debates have emphasised that health literacy is complex and multi-dimensional.
Health literacy is dynamic. There are many opportunities for internal and external influences to maintain, strengthen or decrease health literacy competencies throughout the life span.
Health literacy is an attribute with personal as well as social benefits. It is a social determinant of health, reflecting an interaction between the demands and complexities of health organisations and systems, and the skills of individuals.
The path from health literacy to health outcomes
Higher levels of health literacy are assumed to improve people’s competence, awareness and motivation to access, understand, appraise, and apply health-related information. Health literate people are seen to be better equipped to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion in order to maintain or improve quality of life during their life course. The path from health literacy to health outcomes is, however, not smooth or linear. Intervening or ‘mediating’ factors influence whether people retain, retrieve, and decide to use the information they have access to when making health-related decisions. Several models have been put forward to better understand the pathways from health literacy to health behaviours and outcomes.
In keeping with the NAPWHA HIV Health Literacy Framework project, consultations were held on 23 August 2019 with health care providers in Far North Queensland. The objectives of these consultations were:
- To identify corresponding strengths, gaps and limitations within the Australian health care system
- To identify opportunities and strategies for improving health literacy environments across the connected HIV-related quality of life domains
Related documents & further reading
Changes in the lived experiences of women with HIV over two decades? A review of qualitative research in high income countries [PDF] — by Lisa-Maree Herron, Allyson Mutch, Chi-Wai Lui, Lisa Fitzgerald. School of Public Health, Faculty of Medicine, The University of Queensland, Brisbane, Australia.
The power of peers: W3 framework for evaluating the quality and influence of peer-led programs[PDF] — by Graham Brown and Daniel Reeders reproduced from HIV Australia, Volume 14, No. 2
Mobilisation, politics, investment and constant adaptation: lessons from the Australian health‐promotion response to HIV [PDF] — by Graham Brown, Daryl O’Donnell, Levinia Crooks, Rob Lake (First published: 16 April 2014)
Ronald Woods, NAPWHA Research Consultant / Learning & Development Training
Cristian Cortes Garzon
Jimmy Yu-Hsiang Chen
Organisational and network supporters
Cairns Sexual Health Service (Carla Gorton, Dr Darren Russell, Lucy Thallon)
Living Positive Victoria
Queensland Positive People (QPP)
NTAHC (Northern Territory AIDS and Hepatitis Council)
Positive Women Victoria
Advisory Steering Group
Kate Bath, ASHM
Craig Burnett, Living Positive Victoria
Alison Coelho and Pier Moro, Centre for Culture, Ethnicity and Health
Jane Costello, Positive Life NSW
Nic Holas, The Institute of Many (TIM)
Shih-Chi Kao, Pozhet NSW (Heterosexual HIV Service)
Rebekah Lamb, NTAHC (Northern Territory AIDS and Hepititis Council)
Kath Leane, Femfatales
Kirsty Machon, Positive Women Victoria
Melissa Warner, Queensland Positive People (QPP)
For more information: Advisory Steering Group Terms of Reference [PDF]
The project is supported by a funding grant from ViiV Healthcare Australia
For more information on the NAPWHA HIV Health Literacy Framework project
Contact Saysana Sirimanotham (Project Coordinator)
(02) 8568 0300 / 0424 898 698