Co-designing with consumers, carers and other stakeholders a self-management plan for breathlessness crises from chronic obstructive pulmonary disease (COPD)

Project Member(s): Luckett, T., Agar, M., River, J.

Funding or Partner Organisation: Medical Research Future Fund (MRFF - Preventive and Public Health Research Initiative)
Medical Research Future Fund (MRFF - Preventive and Public Health Research Initiative)

Start year: 2023

Summary: Background: Breathlessness ‘crises’ or acute-on-chronic episodes are terrifying events that disempower people with COPD (‘consumers’) and their carers, and often result in unhelpful Emergency Department (ED) presentations. Breathlessness crisis management ‘plans’ are written educational tools that provide consumers and carers with a step-by-step guide to using non-pharmacological strategies that bring breathlessness crises under control. Aims: This 3-year project will partner with consumers, carers and clinicians to co-design an evidence- and theory-based breathlessness self-management plan and supporting educational resources (collectively termed “the intervention”). Feasibility testing will be used to refine the intervention and develop an accompanying implementation package and quality improvement measures. The final intervention will be disseminated in online, printed and mobile app formats through the Lung Foundation Australia’s networks and educational program, so that it can start to improve outcomes within 12 months from the project ending. Methodology: Our methodology is informed by a comprehensive co-design approach and framework for developing self-management interventions for chronic illness. The co-design process will be informed by a cross-sectional survey to learn from current practice and engage stakeholders, promoting ‘buy in’. A modified Delphi will be conducted at the end of the co-design process to gather broader consensus on the final plan. Feasibility testing and refinement will use an innovative case study design over three iterative cycles, with ‘cases’ being one service each from Respiratory Medicine, Specialist Palliative Care and ED. Data collection will use multiple sources for triangulation, including patient journey mapping, observation of consultations, and focus groups/interviews with consumers, carers and clinical teams.

FOR Codes: Respiratory diseases , Palliative care, Urgent and critical care, and emergency medicine

Acknowledgement of Country

UTS acknowledges the Gadigal people of the Eora Nation, the Boorooberongal people of the Dharug Nation, the Bidiagal people and the Gamaygal people, upon whose ancestral lands our university stands. We would also like to pay respect to the Elders both past and present, acknowledging them as the traditional custodians of knowledge for these lands.