Lung Foundation Australia has launched a series of culturally safe resources aimed at supporting Aboriginal health workers to talk to their clients about chronic obstructive pulmonary disease (COPD) as part of its Pulmonary Rehabilitation Toolkit. 

Health workers from four Aboriginal Community Controlled Health Organisations (ACCHOs) in New South Wales co-designed resources with a researcher team from the University of Sydney led by Professor Jennifer Alison APAM (left) and her PhD student David Meharg, a Bigambul man raised on Wiradjuri Country in New South Wales. 

The project was part of a larger program— ‘Breathe Easy Walk Easy Lungs for Life (BE WELL)’—funded by an NHMRC Global Alliance for Chronic Diseases grant to build the capacity of ACCHOs to provide affordable and effective management of COPD, including pulmonary rehabilitation, in Aboriginal and Torres Strait Islander communities (Meharg et al 2022). 

‘While pulmonary rehabilitation is incredibly effective, it’s typically not available in ACCHOs,’ says Jennifer. 

‘There is very little knowledge even about what COPD is, let alone that there are things that can be done to manage it.’ 

One critical issue is the lack of funding available for ACCHOs to implement pulmonary rehabilitation programs. 

Programs for managing lung conditions including COPD are not easy to find in regional and rural Australia compared to other chronic conditions like cardiac disease and diabetes. 

Aboriginal people carry a significantly higher disease burden due to COPD than non-Indigenous Australians—the prevalence is 2.5 times higher, the death rate is three times higher and the hospitalisation rate is five times higher (AIHW 2014). 

‘They are stark statistics and the gap is widening, not decreasing. 

‘We know pulmonary rehab can prevent hospitalisations. 

‘We know that people with COPD should be referred to pulmonary rehab, particularly after an exacerbation; we know it can decrease hospitalisations by about 52 per cent. 

‘We need places where Aboriginal people will go for pulmonary rehab after hospitalisation and to be honest, they don’t like going to mainstream services.’ 

Professor Jenny Alison says that the resources are intended to guide yarning.

Jennifer notes that a recent survey of 18 New South Wales-based ACCHOs (there are about 50 in total) showed that none of them offered pulmonary rehabilitation and the only respiratory services generally offered were smoking cessation (the federal government has a program to reduce smoking in Aboriginal and Torres Strait Islander communities) and spirometry, which gets a Medicare rebate (Meharg et al 2025). 

Efforts to fund pulmonary rehabilitation programs at ACCHOs have so far been unsuccessful, despite the relatively small cost required. 

‘You don’t need a lot of equipment to run a good pulmonary rehab program. 

It’s really a case of funding staff to be upskilled and to run the programs. 

Having pulmonary rehab programs in ACCHOs would make a difference to availability and equity of access for Aboriginal peoples to this very effective intervention.’ 

Pulmonary rehabilitation usually consists of two components—exercise training and education about the lungs, COPD and how to manage the condition. 

The research team started by upskilling Aboriginal health workers to deliver exercise training. 

When the COVID-19 pandemic limited in-person training, they pivoted to focus on the education component, developing a set of resources that could be used by health workers to explain concepts and provide information about COPD. 

The resulting resources—which include a series of illustrations accompanying suggested scripts for guided yarning as well as some illustrations based on the experiences of Aboriginal and Torres Strait Islander peoples living with COPD—provide Aboriginal health workers as well as exercise physiologists and physiotherapists at ACCHOs with the tools and information they need to provide the educational component of pulmonary rehab for Aboriginal patients living with COPD. 

A co-design approach was used to identify what information was needed about COPD and its management and then put it into a format that would be easily understood by the local Aboriginal community. 

‘David and I did videoconferencing sessions where I presented the minimal amount of information that I thought was important to understand and we discussed it with the Aboriginal health worker along with the physio or the exercise physiologist who was supporting them at that organisation to get these programs up. 

‘The next week, the Aboriginal health worker would yarn back to us using their local ideas and language, both to see if they understood what we had said and to develop their own yarning scripts relevant to their communities.’ 

A total of seven topics were developed through this process including how the lungs work, what COPD is, medications and how to use inhalers and COPD action plans, why exercise is important, how to manage breathlessness, healthy eating, and how to manage anxiety, depression and stress. 

When surveyed for a mixed methods study, the participants in the codesign process reported that they felt their cultural perspectives and professional opinions were valued and that they were encouraged to include cultural knowledge (Meharg et al 2023). 

Following this, illustrations for each topic and associated scripts were developed by the research team and were reviewed for cultural appropriateness by Aboriginal and Torres Strait Islander physiotherapists and exercise physiologists from across Australia. 

An example of the illustrations and scripts can be found here. 

The researchers also did a qualitative study looking at the lived experience of Aboriginal people living with COPD—their journey from diagnosis to clinical management and the impact on their daily lives (Meharg et al 2024). 

Jennifer says that the results provided a better understanding of the impact of a COPD diagnosis on Aboriginal people, who said they often felt worried and confused after being provided with a diagnosis and were reluctant to talk about it due to feeling ashamed. 

‘When the people we talked to in the study were diagnosed with COPD, they thought it was a death sentence because all they’d seen was their relatives either on oxygen or dying from emphysema, as they call it. 

‘There was limited awareness that there was anything you could do to live well with COPD. 

‘They also had a lot of confusion about medications and other aspects of management and no idea that exercise would help them. 

‘The big message we want to get across is that there are lots of things you can do to live well with COPD.’ 

The study led to a further series of four illustrations and associated talking points to help health professionals understand the experiences of Aboriginal and Torres Strait Islander people with COPD and the opportunities to provide education and pulmonary rehabilitation in culturally safe environments provided by the ACCHOs. 

Jennifer says that completing a pulmonary rehabilitation program through an ACCHO can dramatically improve the life of an Aboriginal person living with COPD. 

‘They meet other people so they don’t feel shame about the fact that they’ve got COPD; they learn to exercise safely, so they can physically do more, which builds their confidence; and they get linked in with their local Aboriginal Community Controlled Health Organisation. 

‘For the majority it changes their lives.’ 

Jennifer stresses that while the resources were developed in New South Wales with the assistance of Aboriginal health workers and ACCHOs in that state, the basic principles should be applicable broadly across Australia. 

>> The yarning resources are available as part of Lung Foundation Australia’s Pulmonary Rehabilitation Toolkit. 

Quick Links:

• References

Course of interest: 

• Australian Physiotherapy Council’s cultural safety training for physiotherapists