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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.

Development of a health literacy framework for Positive Women

Video:  Hear from Community Advocates, Sarah Feagan and Diane Lloyd, who were a central part of a co-design of a health literacy framework for women living with HIV (WLHIV)—a primary focus group of this project in its initial pilot phase. They are reporting back to NAPWHA members at the Special General Meeting (May 2021).

Community Advocates were recruited and provided professional development through NAPWHA. They then went on to facilitate peer-led community consultations 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. These community consultations aimed to investigate what works where and how in terms of health literacy (gaps, enablers and opportunities) and improving HIV-related heath outcomes for women. These consultations went on to inform a range of health literacy initiatives targeting (or tailored for) women.

Let Women Talk - Melbourne Invitation
Image:  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.
Let Women Talk - Melbourne Invitation
Image:  An example of one of the project’s health literacy initiatives, a facilitated women’s health workshop with participants in Darwin. Creating women’s community spaces was identified as an important strategy in strengthening health literacy. Some of the aims:  to provide space to address relationship concerns; promote the benefits of HIV literacy; encourage mental health literacy and facilitate supports; reach out to culturally and linguistically diverse women; ensure that peer support is available; and have the inclusion of champion healthcare providers.

Development of a health literacy framework for Positive Women with experiences of breastfeeding

Video:  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.

On 4 May, NAPWHA and Positive Women Victoria hosted a national online community event for for women living with HIV to learn about the latest advice and guidance on breastfeeding. This forum was moderated by Heather Ellis, co-author of a community resource – ‘Breastfeeding for women living with HIV in Australia’ co-jointly by NAPWHA and Positive Women Victoria. The development of this community resource was informed by community consultations led by the Health Literacy Framework project.

Development of a health literacy framework for Positive Heterosexual Men

Video:  Hear from Community Advocate, Anth McCarthy, who was central to the co-design of a health literacy framework for heterosexual men living with HIV. After the pilot of women living with HIV was rolled out in its initial pilot phase, the framework’s approach was allied to other groups of people living with HIV. Anth is reporting back to NAPWHA members at the Special General Meeting (May 2021).

Anth conducted semi-structured interviews with his peer network from around Australia in 2020. This aimed to investigate what works where and how in terms of health literacy (gaps, enablers and opportunities) and improving HIV-related heath outcomes for heterosexual men. These consultations went on to inform a range of health literacy initiatives targeting (or tailored for) heterosexual men.

Development of a health literacy framework for Positive Latinx (of Central and South America background)

Image:  In May, June and July 2021, NAPWHA invited community members to join national ‘Community Conversations’. These group forums, co-designed and led by Community Advocate Cristian Cortes aimed to better understand the experiences and needs of latinx community members living with HIV who were born overseas in Central or South America.

Development of a health literacy framework for Positive Asians (of East and SE Asian background)

Video:  Hear from NAPWHA Community Advocate, Jimmy Yu-Hsiang Chen, who was central project member in a co-design of a health literacy framework for Asian-born men living with HIV in Australia—a key group of the NAPWHA HIV Health Literacy Framework project. Jimmy is reporting back on the investigation through ‘Community Conversations’—community engagements which sought to better understand the needs of positive Asian men from across Australia. He also announces the establishment of PANA—The Positive Asian Network Australia for all people with an Asian background who are living with HIV in Australia (August 2021).

Image:  In May and June 2021, NAPWHA invited community members to join national ‘Community Conversations’ aimed to better understand the experiences and needs of Asian men living with HIV who were born overseas in East or South-East Asia. The consultations were co-designed by a community reference group and facilitated by Jimmy Yu-Hsiang Chen (NAPWHA) and Justin Xiao (ACON).

Health literacy defined as a concept

NAPWHA HIV Health Literacy Framework: Literature ReviewIn 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 Health Literacy Framework intersecting/collaborating with the healthcare sector  

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.
Video:  In keeping with the NAPWHA HIV Health Literacy Framework project, consultations were held on 23 August 2019 with health care providers and Aboriginal Healthcare Workers 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, references & further reading

Berg RC, Page S, Øgård-Repål A (2021) The effectiveness of peer-support for people living with HIV: A systematic review and meta-analysis. PLoS ONE 16(6): e0252623 [PDF]

Epidemiological analysis of HIV among CALD communities (2021) — by Dean Murphy, AFAO

Experience of HIV among overseas-born MSM and MSM from migrant backgrounds (2021) — by Dean Murphy, AFAO

Reaching CALD MSM and overview of programs and key insights from working with CALD communities (2021) — by Aldo Spina, AFAO 

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)

 

Project collaborators and acknowledgements

Our acknowledges the support and collaboration of several parties which make this project possible.

Research Consultants
Ronald Woods, NAPWHA Research Consultant / Learning & Development Training

Community Advocates
Rita Broughton
Cristian Cortes Garzon
Sarah Feagan
Lara Kruizinga
Precious
Anthony McCarthy
Emma Sheldon-Collins
Jimmy Yu-Hsiang Chen

External Research Evaluators
Dr Lisa Fitzgerald, University of Queensland
Dr Allyson Mutch, University of Queensland

Organisational and network supporters
Cairns Sexual Health Service (Carla Gorton, Dr Darren Russell, Lucy Thallon)
Femfatales
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]

Project funding
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
saysana@napwha.org.au

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