Development, refinement, and acceptability of an educational intervention for informal carers of patients with breathlessness in advanced disease - PEOLC08

(Learning about Breathlessness Study 2: LaB2)


Breathlessness is a frightening symptom experienced by patients living with a serious, life-limiting conditions; it is also very frightening for those family members and friends who support them – their informal carers. This project aimed to develop and evidence-based educational intervention for informal carers to help them support someone with breathlessness.


“Supporting Someone with Breathlessness” is a web-based resource for informal carers (family and friends) of people with breathlessness: It is evidence-based and mapped to carers learning needs and preferences. It can be used by carers on their own, explored in peer/clinician-led support groups, or in one-to-ones with clinicians. It is the key output of “Learning about Breathlessness”: a research programme funded first by Dimbleby Cancer Care, and then by an NIHR Research for Patient Benefit (RfPB) grant and additional funding from NIHR ARC.

Dimbleby funding enabled identification of six key topics carers need to learn about supporting someone with breathlessness and how carers wanted to learn. RfPB funded development of the resource for carers of patients with chronic obstructive pulmonary disease (COPD) or cancer, but stakeholders (carers, patients, and clinicians) suggested we should also consider meeting the needs of carers of patients with other breathlessness-causing conditions, and promote the website to those who could benefit from it – NIHR ARC enabled us to do this.

Project aims

The ARC-funded work aimed to find a way to:

  • meet the needs of carers of patients with breathlessness-causing conditions other than cancer or COPD
  • promote the website to those who could benefit from it – informal carers and clinicians

Project activity

With the additional ARC funding, we have:

  • developed a guidance sheet (with clinical experts), downloadable from the website, on how to use the website if supporting someone with other conditions
  • developed additional guidance on how to use the website during the Covid-19 pandemic (as the website launch occurred mid-May 2020), including supporting someone in the Covid-19 recovery phase
  • developed promotional information leaflets and cards advertising the resource to carers and clinicians
  • developed a “prescription pad” – downloadable from the website – which clinicians can use to guide carers to the most relevant website topics to meet their current learning need
  • edited website film clips (of carers, patients and clinical experts talking about living with breathlessness) and used them on Twitter as promotional website “tasters”

Potential or actual impact

Since the launch of the Supporting Someone with Breathlessness website in May 2020:

  • National and international organisations have endorsed the website, placing direct links to it from their own e.g. British Lung Foundation, Queen’s Nursing Institute, International Primary Care Respiratory Group
  • Hospice-UK promoted it through a Project ECHO session (typically 270+ participants representing most of the hospice sector)
  • It has been used in under/post-graduate pre-registration clinician teaching – its online format makes it an ideal learning resource during Covid-19, alongside its content and functionality as a remote intervention
  • Impact has been reported on healthcare provision (UK and Canada) e.g. use by specialist respiratory teams and an integrated Care System
  • Two international webinars to launch the website generated over 300 bookings across the UK, Europe, Canada, Australia and New Zealand

This evidence-based resource for carers has the potential to impact:

  • Informal carers knowledge, confidence and wellbeing (and resultant service use)
  • Clinician awareness of informal carers and their support needs
  • Patients’ awareness of their informal carers’ support needs
  • Enablement of carer-patient conversations about future care needs
  • Future workforce (pre-registration students) awareness of informal carers and their support needs

Papers/resources associated with this study

The Supporting Someone with Breathlessness website is available at:

Next steps

Covid-19 prevented planned exploration of how clinicians and carers use the website – we are seeking small grant funding to achieve this.

Building on the work already completed toward clinical adoption since website launch, we are continuing to promote the website (and ways of accessing it) to carers, clinicians and relevant organisations locally, nationally and internationally.

Recent activity

Website launched mid-May 2020:

Conference presentations given in 2019-2020 at:

  • Primary Care Respiratory Society 2019 – plenary oral (best scientific abstract)
  • Royal College of Nursing International Research Conference 2019
  • British Thoracic Society Summer Meeting 2019
  • Annual NIHR Charities Consortium for Hospice and Community Research Conference 2019
  • Marie Curie Annual Research Conference 2019
  • Association of Respiratory Nurse Specialists Conference 2020
  • European Association for Palliative Care 2020
  • National Cancer Research Institute Conference 2020

Who is involved?

PI Prof Morag Farquhar 

Researchers and institutions

Prof Morag Farquhar (UEA/ARC)

Roberta Lovick (PPI - ARC)

Sylvia Barnes (UEA)

Dr Gail Ewing (Centre for Family Research, University of Cambridge)

Dr Ravi Mahadeva (Cambridge University Hospitals NHS Foundation Trust: CUHNFT)

Dr David Gilligan (CUHNFT)

Dr Ingrid Muller (University of Southampton)

Prof Chris Todd (University of Manchester)


Morag Farquhar