An educational intervention for unpaid/family carers of patients with breathlessness in advanced disease: developing a web-based resource.

Abstract

Background: Chronic refractory breathlessness is distressing, disabling, and common in advanced disease. Unpaid/family carers provide support for patients, but often lack knowledge and confidence, experiencing anxiety which can lead to crises. The Learning about Breathlessness programme (LaB) sought to address this. Working with carers and clinical experts, the LaB1 Study identified six topics carers of patients with breathlessness due to cancer or chronic obstructive pulmonary disease (COPD) want to learn about breathlessness, and how they want to learn. To accommodate carers' varied learning preferences a web-based educational intervention was proposed, with four delivery modes: self-accessed, or accessed via peer-led support groups, established clinician-led groups, or in clinician one-to-ones. The 2-stage LaB2 Study sought to co-develop the web-based resource, suitable for these delivery modes and mapped to carers' learning needs identified in LaB1.

Method: Building on LaB1, website content was co-developed iteratively through qualitative interviews, focus groups and workshops with bereaved carers, current carers, and patients living with breathlessness due to cancer or COPD (n=24), and with a Carer Advisory Group and Study Advisory Group (included clinical experts) (Stage 1). User feedback on the prototype website was then collected from carers, patients and clinicians (n=16) using 'think-aloud' interviews enabling website refinement through an iterative process (Stage 2).

Results: The co-developed web-based resource, "Supporting Someone with Breathlessness", covers the six topics carers wanted to learn about and is designed to meet cancer/COPD carers preferences in terms of ways of learning. As such it includes words, pictures, film clips of peer carers and clinical experts, links to other resources and downloadable leaflets. Carers, patients and clinicians confirmed content utility and acceptability and suggested enhancements which enabled refinement. User feedback suggested the utility of the four potential delivery modes.

Conclusion: To the best of our knowledge, "Supporting Someone with Breathlessness" is the first website dedicated to meeting the needs of unpaid/family carers of people with breathlessness in advanced disease: https://supporting-breathlessness.org.uk/. The content and format of this nationally endorsed web-based resource were guided by an evidence base of carer educational need and learning preferences. Design features ensure content is accessible for those without digital access.

Supplementary information: The online version contains supplementary material available at https://doi.org/10.1186/s44247-026-00309-1.