New website offers evidence-based support for carers of people with severe breathlessness

Researchers have developed and refined a free web-based educational resource designed specifically for the unpaid and family carers of people living with chronic breathlessness in advanced disease, a symptom the authors describe as distressing, disabling and common in conditions such as cancer and chronic obstructive pulmonary disease (COPD). The resource, called “Supporting Someone with Breathlessness” and available at supporting-breathlessness.org.uk, is the product of the Learning about Breathlessness (LaB) programme, a two-stage programme of work published in BMC Digital Health. According to the research team, led by Morag Farquhar, it is, to their knowledge, the first website dedicated to meeting the needs of this particular group of carers, rather than of patients themselves.

The clinical backdrop is substantial. Chronic refractory breathlessness persists despite treatment of the underlying disease and occurs across a range of advanced conditions, including COPD, cancer, heart failure and neuromuscular disease. Carers of people with respiratory conditions or breathlessness in advanced disease face distinct burdens: they can lack knowledge and confidence, and experience rates of depression and anxiety equal to those of patients. The paper cites findings that clinically significant anxiety and depression symptoms have been reported in 64% and 34% of COPD carers respectively. Population-based survey work has found that carers of people who died from end-stage respiratory disease provided care over a longer duration than carers of people with other end-stage organ failure, with unmet needs relating to help with physical care, information about the disease, and emotional and spiritual support. The more breathlessness the person, the greater the burden on the carer, yet carer education is rarely given systematically.

The foundation for the new website was laid in the earlier LaB1 study, a mixed-method study involving interviews, focus groups and workshops with carers and patients, a clinical expert workshop, and an online survey of 365 relevant health professionals. That work identified the need and desire for an intervention among carers and clinicians, and six topic areas carers wanted to learn about: understanding breathlessness; de-escalating anxiety and panic; keeping active; living positively; managing infections; and what to expect in the future. LaB1 also revealed wide variation in carers’ preferences for how, when and with whom they wanted to learn, including a desire among some to learn jointly with the patient they supported. To accommodate this variation, the team proposed a flexible, menu-driven web-based resource accessible through four delivery modes: self-accessed, via peer-led support groups, in established clinician-led groups, or in clinician one-to-ones.

The new paper describes the LaB2 study, an applied qualitative two-task study that co-developed the resource. Task 1 tackled the most sensitive topic, “What to expect in the future”. Because current carers in LaB1 knew they needed to learn about this topic but, having not yet been through the whole illness journey, were unsure what its content should be, the team turned to bereaved carers with the benefit of hindsight. Twelve bereaved carers of people who had lived with breathlessness due to COPD or cancer took part across two focus groups and six interviews, recruited from the East of England six to nine months after the patient’s death, a timing chosen with sensitivity to death anniversaries. Focus groups were held in non-medical venues with a supportive contact present, a breakout room, and follow-up calls the next day to check participants’ wellbeing.

Thematic analysis of the bereaved carers’ accounts identified three broad thematic areas: “As the patient’s illness/breathlessness got worse”, with six sub-themes including changes in patients’ symptoms, denial and hope, understanding the dying process, satisfaction with care, practical advice and planning ahead, and tension between the needs of carers and patients; “After the patient died”, with four sub-themes covering practical post-death advice, difficult emotions, sources of support and benefit finding; and “Viewing this topic with the patient”. Notably, the researchers observed that these bereaved carers did not talk about caring for themselves, who supported them, or things that helped; their focus was on the challenges they faced and what went wrong. Some subthemes related to generic bereavement issues rather than breathlessness specifically.

Task 1 continued with two workshops involving seven current carers and five patients living with breathlessness due to COPD or cancer, one workshop for each disease group. Participants reviewed paper mock-ups of the drafted main and subpages for the topic, commenting on content, wording and images, and discussed strategies for handling the sensitivity of potentially co-present patients. The drafted pages were then reviewed by a Carer Advisory Group of five bereaved and current carers, with clinical expert input from a Study Advisory Group, before production of the full website prototype. Task 2 then finalised written and visual content for all six topics, developed the home page and resource pages, and co-developed the website name and logo with the Carer Advisory Group. An NHS Media Studio produced short film clips with current and bereaved carers, patients and clinical experts for embedding in the resource.

User feedback on the prototype was collected through one-to-one qualitative think-aloud interviews with 16 participants: four current carers, four carer-patient dyads, and four health professionals comprising three physiotherapists and one nurse, evenly balanced across the two diagnostic groups. The overall feedback was positive. The website was described as “professional-looking”, “credible” and “safe”; the six topics were felt to be suitable; and users liked the calming colours and graphics and the level of the language. Points for improvement centred on making the text easier to read, for example with a darker colour and larger font, simplifying navigation and the labelling of disease-specific content, making the first screen of videos an image rather than plain white, and making content about tools and what the carer can do more prominent. The team worked with web developers through iterative cycles of feedback and refinement, involving the Carer Advisory Group, to address these points.

The finished website is menu-driven, with each of the six topics including a button to access condition-specific content for either COPD or cancer, the two leading causes of breathlessness in advanced disease. It includes words, pictures, film clips of peer carers and clinical experts, links to other resources and downloadable leaflets, mapped to the learning preferences identified in LaB1. The menu-driven design also supports the four proposed delivery modes; in group settings, for example, a different topic could be explored at each meeting to generate discussion. Design features were included to ensure content is accessible for those without digital access, and the content can be used offline as well as online at no cost to the user. The website has been endorsed and promoted by a range of national and internationally recognised organisations, including NHS England, the British Lung Foundation (now Asthma + Lung UK), the British Heart Foundation, the Royal College of General Practitioners and others, and is cited in an official American Thoracic Society policy statement on palliative care in serious respiratory illness.

The authors acknowledge five main limitations. The work focused only on carers of people with COPD and cancer, although the website includes a downloadable guide for carers of people with breathlessness from other, less common causes. A higher proportion of one-to-one interviews with bereaved cancer carers than COPD carers may have affected the findings; for instance, the subtheme on denial and hope was largely derived from the cancer carers. There was very little ethnic diversity among the participating carers, and recruitment was limited to one geographical region of the United Kingdom, although the health professionals recruited were drawn from nationally. Finally, the team did not explicitly seek to include people with health illiteracy or low reading levels in the co-development, although some health professionals gave positive feedback about the downloadable leaflets and film clips for people who cannot read or do not own a computer.

The team also flags a longer-term challenge: because the intervention is a web-based resource, continued funding is needed to sustain it, covering the domain name and support retainer contract, and they suggest that intervention development funding bodies should consider such sustainability requirements for digital interventions. Importantly, this study reports the development and optimisation of the resource, not a test of its effectiveness; the website’s impact on carer knowledge, confidence or outcomes has not yet been evaluated in a trial. The authors note that the website has the potential to support carers directly, to respond to health professionals’ calls for resources to support carers, and to support people experiencing breathlessness in advanced disease through joint learning, with future versions potentially including material for conditions such as interstitial lung disease and for ethnically diverse carers.

Subject of Research: Co-development of a web-based educational resource for unpaid and family carers of patients with breathlessness in advanced disease

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

Article References: Farquhar, M., Barnes, S., Lovick, R., Burkin, J., Howson, S., Mahadeva, R., Gilligan, D., Muller, I., Greenwell, K., Todd, C., & Ewing, G. (2026). An educational intervention for unpaid/family carers of patients with breathlessness in advanced disease: developing a web-based resource. BMC Digital Health, 4(1), Article 74. https://doi.org/10.1186/s44247-026-00309-1

Image Credits: AI Generated

DOI: 10.1186/s44247-026-00309-1

Keywords: breathlessness, carers, palliative care, COPD, cancer, web-based intervention, co-development, qualitative research, digital health, advanced disease, educational resource, Person-Based Approach