The BREATHE Project

About us

The BREATHE project is a collaboration between IMPACCT and a number of other organisations, including the Lung Foundation Australia. Our aim is to co-design and test an optimal Breathlessness Episode Recovery Plan and supporting resources.

Background 

Many people with chronic obstructive pulmonary disease (COPD) experience ‘persistent’ breathlessness that interferes with everyday activities like shopping, housework and having a shower.

For some people, breathlessness can become worse in a way that’s frightening, resulting in them calling an ambulance or going to Emergency.

Worsening breathlessness can sometimes be a symptom of a COPD ‘exacerbation’ or ‘flareup’ that requires medical treatment. However, at other times, it can be caused by exertion or changes in the weather, and can be self-managed using simple strategies such as positioning, breathing techniques, and a hand-held fan. People often need to manage feelings of panic in these situations to avoid a ‘vicious cycle’ between anxiety and breathlessness.

‘Breathlessness Episode Recovery Plans’ (or ‘Breathlessness Plans’ for short) are easy-to-follow guides that summarise what to do when breathlessness becomes worse using simple, non-medicated strategies to help breathing and thinking. 

Breathlessness Plans can be used as the first step of a ‘COPD Action Plan’ that covers medical treatments such as antibiotics or emergency care to manage a COPD exacerbation. 

Project aims

This 3-year project is partnering with people living with COPD, support persons, and healthcare professionals (i.e. doctors, nurses, allied health) to co-design and test an optimal Breathlessness Plan and supporting resources.

The project has potential not only to improve quality of life for people with COPD and their families but also to reduce unhelpful Emergency presentations. 

Research phases

Phase 1 (completed):  Scoping Review and Survey of Current Practice

From October to December 2023, we conducted a survey of people living with COPD, support persons, and healthcare teams to find out what Breathlessness Plans were already being used in Australia, New Zealand, and internationally. We also searched for existing Breathlessness Plans on the internet and in the research literature.

Phase 2 (completed): Co-Design Workshops – Round 1

We ran our first round of 7 co-design workshops from May to September 2024. Findings from the survey were given to teams of people with COPD, support persons, and healthcare professionals. They used this as a basis for deciding the content to include in an optimal Breathlessness Plan. This round of co-design workshops is now complete.

Phase 3 (completed): Co-Design Workshops – Round 2 

We have run a second round of co-design workshops with a new team of people with COPD and support persons to decide the design of the new Breathlessness Plan, including the format, style and diagrams, that will make it easy to use.  

Phase 4 (Complete): Public Consultation of the Draft Breathlessness Plan

From November to December 2024, we released a draft version of the Breathlessness Plan to collect feedback from people with COPD, support persons and healthcare professionals across Australia.

Based on the feedback received, we revised the Plan to make it even better. 

Phase 5 (Current): Feasibility Testing in Hospital Settings

We are currently trialling the revised version of the new Breathlessness Plan at three hospitals in Australia. 

We will interview people who use the Plan and their healthcare teams to collect their ideas on how it can be further improved and can be better supported. We expect this phase to run from March 2025 to August 2026.

Phase 6: Co-Design Workshops – Round 3 

We will create a digital format of the Plan (i.e. website and/or mobile app). The content, design and usability of this version will be decided by a new team of people with COPD, support persons, and healthcare professionals. We expect this phase to run to the middle of 2026. 

Phase 7: Final Breathlessness Plan 

The final Plan will be made freely available in print and digital formats through the Lung Foundation Australia’s website, networks, and educational programs, as a complement to their COPD Action Plan.