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 as an evidence-based means to maintain an undetectable viral load 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. The cohort within the body positive that will be focused upon over the three years of the project is women living with HIV (WLHIV). Led by Community Advocates, NAPWHA have held community consultations with women living with HIV in Melbourne and Darwin in 2019. These consultations form part of the basis of a HIV Health Literacy Framework in 2019 to support an improved conversation with women. The emerging health literacy framework aims to support the development, implementation and evaluation of specific health literacy initiatives targeting (or tailored for) women. Once the Framework pilot is demonstrated to work within WLHIV, it can then be extended to other community groups within the body positive, and learning from the Framework can be shared within the sector.
A strongly participatory and action research approach underlies the initiative. The objective is that women 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.
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)
Our acknowledges the support and collaboration of several parties which make this project possible.
Principal project co-investigators
Dr John Rule, Senior Research Manager, NAPWHA
Dr Graham Brown, Australian Research Centre in Sex, Health and Society, La Trobe University
Ronald Woods, NAPWHA Research Consultant
Community Advocates / Research co-designers
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 & Health
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 funded by ViiV Healthcare Australia whose responsibility is limited to providing financial support for the activities outlined in the project plan as listed on the project’s Evaluation Framework. NAPWHA reports back to ViiV on these activities on a quarterly basis.
For more information on the NAPWHA HIV Health Literacy Framework project
Contact Saysana Sirimanotham (Project Coordinator)
(02) 8568 0300 / 0424 898 698